Just Another Blog

Moving in the right direction

2011-07-28T18:20:00.000-05:00

Things seem to be moving in the right direction for me, with the exception of the high temperatures...they need to go down and now! As I get older the heat seems to get on my nerves a lot more. And then in turn, the rest of the world does too.

However, I have met some amazing ladies in my "Am I Hungry" class and have found them to be refreshing, supportive, caring and hillarious! Most of my social events revolve around food...restaurants or pot lucks. But when I am with these ladies, I have a great time and we are not eating! Okay fine, we are talking about eating but that is calorie free!

I have lost 6 lbs. I feel better. My blood sugars are doing fantastic. I feel more in control of myself. Sure I may have a big meal once in a while but I don't beat myself up over it anymore. That always resulted in more eating! Now the new medicine my doctor put me on is probably helping too but either way, it's all good and I am going to move with it!

My brother in law has remodeled our bathroom for us and fixed our leaky faucet. It looks amazing. We have a bit of touch up stuff to do and I want to paint the door but that will wait until the fall. I hate painting and I hate painting in the heat even more!

The boys are doing amazing! Jonathan will be in first grade in 2 weeks! Zachary is making huge progess physically and I have to say, when people comment on it, it makes me feel so much better! I want to make sure it is really happening and not just something I want to see.

Well that's it...boring huh?

Am I Hungry?

2011-07-03T16:58:00.000-05:00

Now there's a question that I didn't start asking myself until recently. For years it was more of a statement, "I am hungry.". I never gave it much thought. I ate when I wanted to, what I wanted to and as much as I wanted to...never letting the over stuffed feeling stop me. Shoot, I love food and for the love of Pete, you only live once, right?

Times have changed for this girl! No, I am not on a diet and I never will be. I will never fork over money to Weight Watcher's again nor will I ever be one of these people who constantly watch what they eat or are watching what everyone else eats, and passing judgement. Those days are over.

If you have never heard of Dr. Michelle May, I suggest you google her right now. In my opinion, Dr. May is the Dave Ramsey (don't know who is? Google him too then!) of instinctive eating. Dave Ramsey encourages you to take your financial life and get real! No more excuses and his advice is truly common sense. Dr. May, she basically teaches you that food is fuel and once you learn that and learn to ask yourself, "Am I hungry?" and learn to only eat when the answer is yes, then you will in turn be a happier person.

I signed up for a support group/class called "Am I hungry?" and the first thing I discovered is that I ate because it was time to eat, I was bored, mad, stressed or unhappy. And I often ate foods I didn't like! It isn't easy to change and it is a long process but the power behind it is amazing.

I figure between Dave and Dr. May, I will find lots more reasons to be happy and rather than filling my mouth with food, I will become more productive and my to do list will be longer. And after I finish with Dave, I will have more money to spend and can then shop rather than eat! :-) Just kidding!!!

Another birthday

2011-03-12T22:30:00.002-06:00

Today I got an email from some birthday reminder program reminding me that "Mom Keeven's birthday is coming up, don't forget to send her a card!" Really?

March 19th is my Mom's birthday. While I can't spend it with her, I am lucky enough to be with my incredible Mother-in-Law on that day. Another reason to celebrate that day!

Each milestone that passes, I expect it to be easier. In some ways it is yet my heart is still a bit heavy from missing her. I often, more often than I admit, see someone that will remind me of my Mom in some way. I find myself doing double takes to make sure it isn't her. A family member will do or say something or pull a "that's so like mom" habit or something and my heart aches for her. There are so many things I want to tell her and share with her. Jonathan still carries around a teddy bear she got him for his first Christmas.

Every time I hear the Toby Keith song, "Courtesy of the Red, White and Blue", I can't help but think of Mom and smile. I remember sitting with Mom in their kitchen and she had that damn boot on her foot and was sitting in her wheel chair listening to the radio. She loved country music and she was singing right along with Toby and when Toby sang "And the Statue of Liberty was shaking her fist", Mom shot her fist up in the air but when Toby sang, "Cause we'll put a boot in your a$$"...Mom's boot came up and I couldn't help myself but laugh. She looked so serious and was extremely into it. Too bad they didn't send her after ole Osama...cus that was a big boot she had!

Because of Facebook I am in touch with more of her family and I love it. We talk about old times and its nice. My mom was a lot like my Grandma...a spit fire. Yelled at the TV when their soaps were on. Well I do that and the funny thing is it's the same soap they watched! I remember Grandma talking loudly and having that "yelling tone" to her voice. Mom had that and yep, I have it too. But that's okay because Mom was wonderful and I am glad to be like her and love that there is a little bit of "Momism" in me and each of my sisters.

I miss you Mom. I love you and I look forward to seeing you again some day. Until then, keep protecting all of us...you are doing a great job!

Winter Blues

2011-02-03T19:52:00.000-06:00

Is it spring yet? I was tempted to send Harley out to eat that darn groundhog! Luckily old Phil there saw his shadow. I am just surprised at the amount of snow that St. Louis has gotten this winter. However I was so excited at the idea of being "snowed in". We were suppose to get 1 inch of ice and like 12-18 inches of snow. Well, luckily that storm shifted (Sorry to my Chicago friends) and in my area we got about 3 inches of ice and 1 inch of snow. And it's cold. I dislike the cold. Well really it's the idea of having to go out in it. If I could stay home and be in my jammies with food, coffee, tv and my Nook and computer I'd be set for quite a long time! Sad but true.

When I was home on one of these days (last month I think) a preview of the Oprah show caught my attention and I made sure I tuned in. This episode was extremely touching and moving and brought me to tears. I am amazed on a daily basis how people can survive a tragedy that I feel would absolutely kill me. This amazing couple, The Coble Family, suffered a horrific loss. In an instant, they lost all 3 of their children in a horrible car accident. Please visit their link above to read their story as I do not want to get any of the details wrong. It is sad but also amazing. On the Oprah show, they said how after the accident they made a promise to each other that they would not take their own life and leave the other one alone. That just stuck with me.

I can not even fathom what they went through and how they managed to get up and go on with life. I know they say "you have no choice" but still, I can't imagine.

I think about this family on my drive to daycare or the grocery store or anywhere with the kids. I just really wanted to share their story. I am amazed by their faith, honesty and strength. If you need an inspiration, please read it. Treasure every moment as you never know when it will be the last.

Snow and More Snow

2011-01-22T00:08:00.000-06:00

This past week we were hit with 10+ inches of snow! Now to some of you that is nothing but we have not had that much snow since 1982! I remember that winter because I thought we would get snowed in like they did once on Little House on the Prairie. I remember opening the door and hoping (not sure how) that on the other side it would be all snow and we wouldn't be able to get out! Luckily for the sanity of my Mother, that did not happen!

Since we are all still fighting some sort of cold, I did not want the boys to stay out too long. It took us a good 20 minutes to get bundled up so we could go play for all of 10 minutes!

I think he might get lost!

My little devil made a great angel!

We really had a great time though. However Zachary fell down face first in the snow, busted his lip a tiny bit and lost a glove! He's a tough cookie and still giggled! Jonathan just had a blast! Jason plans on taking him sledding tomorrow so we will see how that goes!

Jonathan is doing great at school. Coming out of his shell, improving in all areas and reading to me! It baffles my mind what he can do now! We try to read every night and I swear every night he knows a few more words. It's great!

Zachary still refuses to go on the potty and still wakes up screaming one or 2 times a night and will end up in my bed by midnight. I don't know if it is his sleep apnea, night terrors or habit. Jonathan out grew it by 3 so maybe Z will out grow it soon...I hope!

2011 is the year of change

2011-01-09T08:41:00.000-06:00

And that is my New Years Resolution!

The first visible change is the title of my blog. While I will always continue to pray for my Z and his big brother JD, I think I can say that the worst is behind us with Z. It's a new year and I told myself it is the year of change and by that I mean change for the better!

For 2011, I vow to:

update my blog at least once a month
work on my patience with the kids
not stress over housework as much
be kinder to strangers
get more physical activity
spend more time with my husband
take care of myself

These are not in any particular order but I decided to be kinder to myself this year and not expect so much from myself so that I can enjoy what I have. Life is too short. A good friend has been pointing that out to me lately and I thank her!

Now about the boys...

Jonathan is in kindergarten. He has adjusted very well but still has a hard time on Mondays. He likes learning and I love watching him learn. He is starting to read and he told me he loves math. He also seems to like the girls! He is a sweet boy and so sensitive. I am so very proud of him. I feel like he gets neglected a bit due to all of Zachary's needs so Jason and I are both trying to make sure we spend time with each of the boys alone and obviously together. My buddy also turned 6 and is a very big boy! He is 49.5" tall and 72lbs! I can see my grocery bill being more than my mortgage in a few years!

Zachary is doing amazing! Looking back to where we were 3 years ago, I never ever imagined how far he would come. He is walking, running, talking and learning so much!!! At 3 years old Zachary aged out of the First Steps program. He did not qualify for Physical or Speech therapy with the special school district. This was a sad and yet happy moment! I felt he needed a bit more but his speech really truly has taken off and he knows so much and is communicating so well. He is getting there physically...he can walk down the steps using a rail and this was a HUGE milestone for him and he has worked very hard to get here. We are trying to potty train but he has no interest. The psychologist we saw said not to expect anything until 3.5 years old because Z is just not there yet. So we encourage it but don't put too much pressure on him. He's a tiny guy but he sure is mighty!!!

Well that is long enough of an entry for today. If I can figure out how to do this from my "smart phone" then I will update more often.

Wishing you all the best for 2011!

The Great Return

2010-07-02T22:40:00.002-05:00

I made a decision last week to return to Dr. Kate as her patient. It is about a 30 minute drive but I just haven't had the comfort level with any of the other doctors in the office. Once I called and set up the appointment, it was a huge relief. It's funny how other people can see things you are going through and you still can't...no matter how many times they tell you or how many people tell you.

I saw my endocrinologist and was finally put on cholesterol medicine. I tried to talk to her about my chest pains and anxiety but I couldn't. She referred me to my primary doctor and encouraged me to talk to them as she could tell my anxiety level was very high. So I've been told! I have been having chest pains for a few weeks. I do not think it is my heart nor do I think I am depressed, I just can not stop and relax. I have try and get it all done and if I can't, I get angry with myself. People say, "I don't know how you do it" but you see it is what it is and I don't think I am doing anything more than anyone else. This is life. This is my life. I am blessed, so very blessed and I should be happy and enjoying it. I am happy (I think), I am just not taking care of myself or to be honest, enjoying much. No I don't want a pity party and I don't want to be a martyr. I am just stating the facts. I know I have it good but for some reason, I can not get my mind to slow down and allow myself to relax and enjoy. Yes I have stress...work, home, money, kids and making it all work together and keeping everyone happy. Everyone but myself.

Little did I know that the old saying is true...If Momma ain't happy, no one is! Well Momma really isn't happy. When I saw Dr. Kate today it was like seeing an old friend and I felt safe. She was honest with me and I think she thought I was still in a bit of denial about anxiety. And I think I was too. She reminded me that if I were to look back over the last 3 years, I had dealt with a LOT of stuff. I knew that but other people deal wth a lot of stuff too. But yes, I am tired. I am tired of being tired. I am tired of not being able to relax and enjoy my beautiful family. I am tired of yelling and my kids and not talking to my husband because I focus on house work. I am tired of not taking care of myself and feeling run down. I agreed to try some medicine and see if it can help. I need something to help balance me out and I pray this does the trick. I kept thinking I had to make my own happiness but I don't even know how to do that. My calendar is full of appointments for Zachary and every year I say it will be less appointments the next year but then something else comes up. I am just trying to fix everyone else in my house and take care of them and I still feel like I am not doing enough. It's a silly circle of guilt!

Well it is time to stop the guilt, do what I can for my family but to make sure I do something for me and take time to stop and smell the roses before I miss out on the beautiful things in front of me. I hope all of you will slow down a bit too.

My choice in returning to Dr. Kate was a great one!

Hello Stranger!

2010-06-20T21:01:00.002-05:00

Ah, it's been a while...sorry about that.

The last few months have been crazy. Not bad, just crazy. We are still focusing on trying to find out what is wrong with Zachary, sleep wise. He does have a mild sleep apnea that does interfere with his breathing but the doc feels it is not a good idea to introduce a CPAP yet. I was happy with that. The pulmonologist put him on Nexium but then a week later we saw the gastro doc and he put him on Prevacid 24. The Prevacid is easier to give him. Of course as soon as we started giving it to him his left ear starts draining again. OMG are you serious?

Oh wait, I left that part out! In May his left ear was draining, I mean oozing like a runny nose...sorry! So we called the ENT and told them he had been on antibiotics 3 times since March and his drops were not going in the ear. She got us right in. His left ear was full of puss and the right ear had fluid and the tube was out but still in his ear. So we had to suction out the left ear and she pulled the tube out of his right ear. He did great. We went back 2 weeks later for a hearing test and he passed. Looked at his ears and both had fluid in them. She gave us the option of just getting tubes again or waiting 2 months to see if the fluid cleared up. I opted to wait. She said if he got one more infection between then and his appointment in July then we would just schedule tubes. So of course, we have a call into them waiting for the surgery date! :-(

So when the ear started oozing again last weekend and he ran a fever and cried of ear pain, I called the new pediatrician. He is wonderful! He was prompt and the staff was great and he discussed all my concerns. My favorite thing about him was that when he learned we were to become new patients 2 months ago, he went and looked up Noonan Syndrome. He asked me all kinds of questions about NS and Z. It was amazing!! He confirmed a double ear infection, agreed he needed a second set of tubes and told me to confirm with the ENT what he was doing to see if they had any objections. Wow, that was rare! He was truly amazing!!! Love him!

Zachary continues speech and physical therapy. He gets speech once a week and is doing great. His PT is concerned about his left hip/foot turning in so she suggested we get an xray to rule anything else out. We go see the ortho this week. I think then we will just have a follow up with pulmonologist and gastroentrologist in two months and his endocrinologist and geneticist in October. He will also get an eye exam in November. He is still being assessed for the special school district. At 3 years old he will age out of MO first steps for his therapies. If he qualifies for SSD then they will pick him up from daycare and take him to classes for SSD.

Jonathan has graduated from preschool (sob sob) and will start kindergarten in August! He will stay at the current daycare and ride a bus to and from school...I LOVE his school!!! He is such a good boy and he may be challenging for me at times but his teachers adore him and tell me how he never gets into trouble and he is so good! Makes his Mommy proud! T-ball is going ok...lots of rained out games but he's getting to like it. He was in my nephew's wedding Friday and looked so very handsome and did a great job!

Jason and I are chugging along. Working and trying to keep up with life and the boys. It takes it toll on you and we both agreed that we each need bit of time out alone and then of course a date night. Jason plays softball and I go sit at starbucks and chill. Date night is still to be determined. LOL I saw my endocrinologist last week and while my diabetes is all doing great and my weight is maintained, she put me on cholesterol meds. She said the standards they set for diabetics is pretty hard to maintain so she wants me to start some meds and see how it goes. Thank goodness for generics!!! We talked a bit and she suggested I talk to my regular doctor about anxiety issues. I have been in denial for a few months but have had several friends express concern for me. I will admit the last 3 years have been the hardest of my life and I have forgotten how to relax and how to have fun. I am not proud of the temper tantrums I have and how I yell at everyone. I have been having chest pains and just don't feel like I can do it all. I know I shouldn't feel like I have to but I do. I forget to stop and smell the roses. I know I have been extremely blessed and I have it pretty good but it's still hard. I am hoping the doctor can give me some advice. I will be honest, I am not into the idea of therapy and it is purely selfish...I can't give up any more time. I know that's bad but Z has too many appointments and I need my time for them, not me. But I will do what he suggests.

Anyway, we are all still here and doing well. I hope everyone has a very happy father's day.

To my Dad - I love you and am so glad that you are my dad!! Thank you!
To my Father-in-law - I am so blessed to have you in my life. Thank you!
To my husband - you are an amazing father and I love you more than you will ever know. I love how the kids adore you and want to be like you. Thank you!

Two more diagnoses

2010-05-03T19:21:00.002-05:00

Today was an eventful day for little Z. We headed down to Cardinal Glennon to get his speech evaluation (we tried last Thursday but it was a bust due to a missed nap!) and he did great. For his age he should have scored between 85-115 for his age. For his receptive speech he scored a 105, for expressive he scored an 87 and for the third one (can't recall the name) he scored a 75. Due to a few other things and the way he responded during the test they came to the conclusion that he has dyspraxia. He is unable to physically articulate some words. I was hesitant of this diagnosis but I found a website (http://www.dyspraxiausa.org ) and the early symptoms listed there made me gasp for air. A few of the symptoms I read described my Z perfectly:

Irritable and difficult to comfort - from birth - If you have met Z in the evening, you know this!
Feeding difficulties: milk allergies, colic, restricted diet - feeding tube, lots of different bottles
Sleeping difficulties: problems establishing routine, requires constant adult reassurance - has never slept through the night
Delayed early motor development: sitting unaided, rolling from side to side: do not usually go through the crawling stage - OMG he never crawled! And was delayed on all of these
High levels of motor activity: constantly moving arms and legs - a little unsure of this one
Repetitive behaviours: head banging or rolling - He rolls his head back and forth to go to sleep and always has
Sensitive to high levels of noise - Well not so much
Continued problems with development of feeding skills - I think so
Toilet training may be delayed - too early to tell
Avoids constructional toys such as jigsaws and Lego - Not so much
Delayed language development: single words not evident until age 3 - Not so much
Highly emotional: easily distressed, frequent outbursts of uncontrolled behaviour - Um hello?! YES!!!
Concentration limited to 2 or 3 minutes on any task? - Isn't that all 2 year olds?

While I know this is just my high uneducated guess or maybe a mother seeking reasons for her childs delays, I'm not sure but this sure does sound a lot like Z.

After this meeting I got an email for the behavioral pediatrcian (Did I mention that the idea of the physician emailing it's patients is the best thing ever???) saying that his sleep results were in. Z has a mild sleep breathing disorder. Since his tonsils are already out they suggested we see a pulmonologist to discuss a CPAP or BiPAP machine. The alternative (I guess for more laid back parents) was to seek further treatment if condition worsens and follow up in 12 months with another study. I am so NOT the laid back mother and opted for option 1. This child has got to sleep!!!

And this my friends had made today a very interesting day! However, no matter how many diagnoses we are faced with, one thing will always remain the same...Zachary is Zachary and he is wonderful, charming and an absolute love. He is my blue-eyed boy that can melt my heart with his smile and he is worth every trip to the doctor, every dollar spent and every tear I've cried. I will forever adore him and even in the toughest moments, I will fight for this boy to the end!

As for my Jonathan, he is loving his t-ball practice. First 2 games were rained out but he was so happy that grandma and grandpa F. were here to see his parade. He was a bit shy as usual but he is coming around. We went to get him fitted for a tux for an upcoming wedding and the guy said, "If he isn't in football you better sign him up like tomorrow!". He is 5 years old and we had to order a size 10 tuxedo jacket!

We Survived

2010-04-26T20:53:00.002-05:00

Last night was the sleep study for Zachary at St. John's. I went in expecting the worst. We brought his stuffed monkey, a veggie tales movie, a banana, a book and his Wow Wow Wubbzy blanket. We arrived at 730 pm and the technicians were wonderful. Our room had a hospital bed pushed up against a double bed, a desk and was decorated so cute. Z was a bit nervous and kept saying "Ow". But they gave us a bit of time to settle in and then he began hooking him up to the 10,000 wires. He did great! He whined a bit but once the tech showed him it was just stickers and asked him the color of the wires, he sat pretty still!

I was truly amazed at how smoothly it went! We settled in and began watching Veggie Tales. They came back in for the final "hook up" that involved a device under his nose and that was his least favorite. After we started the movie a second time he fell asleep pretty easily and so did I. He did wake up a few times and had pulled a few wires off so of course they had to come in to reconnect him. It was funny because I know one time when they came in I forgot where I was and I had a brief moment of panic, thinking we were in there for other reasons like him being sick! Luckily I snapped back to reality and convinced myself that my little guy was okay and all was well. I didn't get much sleep but it was worth it. I have to admit it was the first time in almost 2 and half years that I was glad that he didn't sleep all night. When he woke up screaming and kicking his legs, I was so glad that someone else was able to witness it. It can take 10 days for the results so now we just wait and be patient.

Sleep Study

2010-04-25T08:12:00.002-05:00

Well tonight we have Zachary's sleep study at St. John's. Z and I are to arrive at 7:30pm and it takes 30-45 minutes to hook him up and then lights and TV go off and we sleep. Funny isn't it? Sleep...he doesn't sleep good and this is going to be so very interesting. The paper said to limit my time in bed with him...ha ha ha! I mean seriously, the kid wakes up and screams, hits, kicks and they want me to not be in bed with him? I am dreading this. The person watching us is probably going to suggest I be admitted to the looney bin and you know what, I'm good with that! :-) The past few nights sleep has been worse than normal so I am anticipating no sleep tonight for me and I pray this test eliminates or pinpoints a problem. We just need to know where to go from here.

This week we have a Parents as Teachers appointment, speech therapy and a speech assessment at the developmental center. I have also requested an assessment with an occupational therapist. We started the paperwork to see if he will be eligible for therapy from the Special School District when he turns 3 and if he is, they will provide transportation to the early childhood center. As I stated before I am confused on what he needs so at this point I am relying the most on his developmental pediatrician to help me determine what he needs. They are increasing his speech to weekly and 2 weeks it will be done at preschool and 2 weeks at home.

Jonathan's first t-ball game is this Saturday and I am very excited for him. He is so very shy and I hope this will help him. And I can't wait to watch him and the other kids have fun.

We had a bad storm last night that sent the boys and myself to the basement for a while. It was crazy but luckily for us, no damage.

More testing (again?)

2010-04-15T19:21:00.002-05:00

I keep telling myself that each year will get better...by better I mean less appointments. Obviously things improved in 2009 and now again they have improved for 2010. We the departure of Dr. Kate I really felt lost. I felt abandoned, even though I know she is a person and has to do what is good for her and her family, it still felt like a loss...loss of a good friend. She got me and never made me feel like that mom. I feel like I have to start over. It sucks and stresses me out.

Anyway, we met with Dr. S today...she was Z's geneticist and is now in behavioral/developmental pediatrics. She is truly amazing. I adore her. It was funny because she arrived a bit late and saw Z through the window. She came in and hugged me and said how good he looked and how he grew and how happy she was to see us. Wow. I wanted to cry. I was shocked by the hug but it felt good. I knew then we made the best move for Z by coming to see her. Her office is really a center at Cardinal Glennon. They have lots of therapists and all were very friendly...even during Z's "you interrupted my nap people!" meltdown. These appointments are so stressful because he is so unpredictable and stupid me left the M&Ms in the car that morning so they were nice and melted. Duh! But we survived and got lots of good info.

She feels that Z needs weekly speech therapy and he will also be assessed by their SLP so that we can report that to Early Intervention and the Special School District. She doesn't want him lost in the system. She feels he has problems expressing himself through speech but understands a lot. She also wants him to do a sleep study and attend a behavior strategy therapy session. And she pointed out he has an umbilical hernia that we need to watch...it is rather small and doesn't seem to be a problem.

I am hoping we can do the sleep study at St. John's. The lung doc that saw him in the hospital was incredible and left Jason and I both feeling good about him. Well he is part of the sleep clinic there so I am hoping he can get him in right away but I am not sure what the procedure is for that. I did a bit of research and managed to find Dr. Rob's wife...that sounds funny huh? Well she is a pediatrician and she came in to see Z in the hospital and she checked his stats too. She too was incredible and I remember thinking how nice she was. I have a call into her office hoping she can take on the boys.

So we had a good appointment, learned more and will soon learn even more. The sleep study will also test Z for restless leg syndrome. I am hoping we get answers soon because sleep is needed in this house!

And today he bit a classmate and hit his teacher...he is sweet, really he is!

Smile! Your on Camera!

2010-04-08T20:50:00.002-05:00

I mentioned a while back that I shared Z's story on St. John's Mercy Children's Hospitals website and then we did an audio recording of it and well now I did a TV appearance! I hate my picture taken and I hate seeing myself on video but I was so excited to do this and when I was told the interview would be done by one of my favorite tv anchor women, I could not refuse! Every morning I watch Fox 2 News in St. Louis and I laugh along with the news cast and I feel like I know them! You can imagine my excitement at the possibility of seeing these people live and not just on tv! I felt like a 10 year old girl going to a Jonas Brother's concert!!!

I arrived at 7:45 and met Bethany from St. John's and she was very nice. I finally had the courage to ask her if the show was going to be live. Her response of course was, "Yes!" and then I felt the sudden urge to puke! But it was so exciting!

When we met Margie (Did I mention I love her?), I was star struck! She was nice, beautiful and OMG so put together! I just simply prayed my breath didn't stink and I didn't have anything hanging out of nose or anything from the kids left on my shirt! We went back on the set and my head was spinning! I saw John, the back of Glenn's head, Randi and Monica! I wanted to scream and run and touch each one of them and I wanted to take pictures. Yes, I was beyond star struck! Don't worry, I don't have a record of stalking so everyone is safe!

They hooked me up to a mic and there were like 10 monitors and people talking and they all sounded so together and looked beautiful and perfect. Why was I here? Oh that's right, it wasn't about me it was about the kids and letting families in St. Louis know we have a hospital for our children and it is awesome! The same hospital that can give adults wonderful care, also has a new wing to take care of our children! Who cares if I look awful and hate looking at myself in this video...it's for a good cause!

So here it is ladies and gentlemen, my TV debut!

STLMoms: St. Johns Mercy Children's Hospital Is Calling All Moms

Luckily I set the DVR, just in case it was live. When I got home tonight I showed the boys. Jonathan just giggled and giggled and said, "Mom that's you on TV!". Z finally saw it and said, "Mommy. Mommy. Mommy." and kept pointing to the tv and smiling. That said it all. Who cares what I look like...my little boy is alive and well! He is the classic 2 year old...terrible. LOL He is full of life, eager to learn and absolutely amazing! He has overcome so much and I don't think his struggles are over yet, but I know the worst is behind us and it is because of the doctors and nurses that cared for him and knew how to help him. I will always be forever grateful to all of them.

Spring is coming!

2010-03-27T22:24:00.005-05:00

Well at least I hope so. The kids really need time outside and I try to let them get out there in the evenings but I don't feel too bad if we don't make it out because I know they are outside at school. Thank goodness!

I have let them eat dinner outside a few times and they love it. Our backyard needs a huge spring cleaning so for now, we play in the front. They love bubbles, sidewalk chalk and popsicles. If life could stay that simple forever, what life we would have!

Jonathan starts T-ball on the 29th and I am so nervous. He is excited so I am trying to run with that. He is really just becoming such a big guy. He adores his brother, has good manners and can be so polite and can talk your ear off! Then if he gets tired, all of that goes out the window. He is now loving school and is doing so good. I see improvements in his writing and the things he is learning...wow! I can't believe my baby is getting so big.

Zachary is moving along. He's got this little budda belly so most of his shirts are starting to get too small but then his pants, are just so long on him and quite often Jonathan and I will sing, "Pants on the ground" to him. He is trying to learn his colors and go potty on the big potty. His speech has taken off. His motor skills are coming along too. We are working on jumping and he loves this. He will say, "hop" and take your hand and hop and both feet come off the ground! He still has not mastered the steps but is trying so hard. His little head is full of knots from his daily falls and his tantrums where he headbutts stuff...one day he'll learn that that hurts and he'll stop, right? He loves school too and he loves books. He will bring books to me and say, "read" and this is all new to me so I am loving it. In April we will meet with his First Steps team, a representative from the special school district and from our school district to determine how we will handle his needs when he turns 3. He will graduate from First Steps and the SSD will take on his needs, if he should need any therapies.

As for sleep, we have none. Jason and I figured out that he sleeps good the first 3 or 4 hours and then he is up every 1-2 hours crying, screaming and hitting. It is miserable and April 15th can not come soon enough. We see his geneticist who is now a behavioral development pediatrician and she is going to discuss a sleep study and all sorts of stuff. Everyone is puzzled as to why he does this when he is in bed with us! He searches for my face and cups my face or will ask for my hand and he is awake because he will talk to me. It is truly exhuasting and is taking it's toll on our family so it is time for us to get some help.

And here is a recent picture of the boys outside...

Happy Birthday Mom!

2010-03-19T17:57:00.002-05:00

Today is my Mom's birthday. I miss her terribly and wish she was here. I know she is pain free and watching all of us from above. Yet, it still hurts.

This morning the boys and I said (well Jonathan yelled) "Happy birthday Grandma!" and blew kisses up to heaven. We know she got them.

Then I took the boys to school, did some laundry and cleaning, registered Jonathan for kindergarten (gasp!), went to the grave site with my sisters and then had lunch at the Blue Owl. It was a beautiful warm sunny day and we ALL got along! It was perfect and I was sad for it to end. Mom would have enjoyed it.

The boys are doing well. Zachary goes to see the Pediatric behavioral development doctor on April 15th. She is going to discuss his sleep issues and possible order a sleep study for him. She is his geneticist so she will obviously know his history and have experience with Noonan Syndrome. I adore her and can't wait to see her and see what advice she has for us. Zachary is going through a "mean" stage...hitting, biting and such. Oh joy! He had his orthotics adjusted as he was getting a sore spot on his right foot. His speech is coming along and we are still working on the steps. That is going to be a long time before we get there!!! But he has come this far and overcome so many obstacles, I know he will catch up and do great.

St. John's Mercy Medical Center, where he had his surgeries for the broviac line and where he was for 2 weeks was asking for stories for their new Children's hospital's website. I submitted Z's and it is now on there site. Click here to read it. Although if you've read my blog, you already know his story. I got an email 2 days ago and they want me to come in and record an audio version of his story. I am more than happy to do it because I want the world to know how great of a hospital SJMMC is! I hope one day I can pay it forward and help the hospital out.

Well Mom, I hope you ate lots of cake! Love you always!

Why

2010-03-10T14:51:00.003-06:00

The last few weeks have been rough. Not a "feel sorry for me" rough, just rough. The toll of Zachary not sleeping is really catching up with me. It has causes a lot of tension in the house and a lot of crankiness. Winter itself has been depressing this year. Money has been tight. Sicknesses have been less but when they came, they hit hard.

All this "roughness" has caused me to question why I was blessed with these 2 wonderful boys. I don't feel worthy. I am not patient and sometimes I am not kind. I yell and scream and I do that a lot. I love my two boys with all my heart and would die for them. I am so blessed, I am so lucky and no matter how rough things get, I am happy. I just wish I felt like a better person, mother, wife and friend.

No worries, I am not "in a bad place" and I don't really feel sorry for myself. I am just tired. Some days I cry from exhaustion and some days I eat to keep from falling asleep. I use food as my source of comfort and that is so wrong. I want my boy to sleep. I want my family to sleep. I want to be the best that I can be because those two little boys in the other room deserve the best. This Mommy gig is so hard and I am sick of the "stepford" mom's making it look easy. Let's get real here!

The one thing I have learned since I became a Mother is the simple fact that you do lose yourself and you forget to take care of yourself. I think when a woman becomes a Mother, there needs to be a book on this issue. I know so many other women who would make better Mother's than me. God chose me for a reason and my children are with me for a reason. I know they make me a better person but I just hope and pray that I am doing some good for them. I see them picking up my bad habits and it is so hard to see your sweet child pick up your worst traits. No baby raising books prepare you for that! It is a huge slap in the face. I am so far from perfect and my parenting ways are so very far from perfect.

As my sister told me, I am doing the best I can the best way I know how. I just hope it is enough. I hope if I live to be 80, my boys still love me enough to come visit me. They really are worth it and I think when we all learn to sleep, life in our home will be much better!

In like a Lion?

2010-03-04T21:28:00.002-06:00

Well not sure if it is a lion but it has been a tough week and I just blame it on the old saying that March comes in like a lion and goes out like a lamb.

As a child I hated March! When my Mom told me that March came in like a lion, I hated March at that moment. Well, I really hated tornadoes and March is when we seemed to get them the most. I loved the Wizard of Oz and I think from that movie came my disgust/fear of tornadoes. I did not want to be swept away by a tornado. That was my biggest fear growing up. My sister (yes you Debbie) use to tease me because I cried almost every time the wind blew. I mean I really feared tornadoes.

Every time March came around, I counted down until the end of the month so I could embrace the lamb part of the month.

On Monday I learned that our family doctor just left the practice! My beloved Dr. Kate is gone and I felt like I was left hanging in the wind. Who was going to calm me down when I freaked out about all of Z's issues? So I decided to email his geneticist to find out of she could refer someone too me and to ask her questions about his sleep issues. I get an email back telling me she is no longer practicing genetics. OMG are you serious? We lost 2 doctors in 3 days??? Well the good news is that she still sees kids with genetic disorders and hinted that she would like to see Z so she could refer him for a sleep study. Okay that made me feel better!

I also discovered Dave Ramsey and am eager to start his total money makeover plan! Our first step is to create our emergency fund of $1000. Oh.Dear.God. I figure by 2012 we will be there...hoping that isn't true! I made a list of ALL our debts and included the medical as he suggested. It's a long list and that made me sad but I know what we are up against and we are going to knock it out one creditor at a time. I dream of the day that I have no debt and I can give to people and help others out. That is my goal!

Dave says...Debt is Dumb!

The Sickies have left the building...

2010-02-27T23:09:00.003-06:00

well or so we hope so anyway!

The last two weeks have been filled with stomach bugs, pink eye and sinus infections. It hasn't really been fun at all. But we all survived and I am still catching up on the housework.

We are all anxiously waiting the arrival of Spring! I think it got lost, yet March is near. March does come in like a lion and goes out like a lamb. It isn't even here yet and there has been an earthquake in Chile and a tusnami in Hawaii. And the snow that has been dropped on the US is absolutely crazy!

Next week I am volunteering at a local food bank, filling boxes to be distributed to low income families. It is manual labor that I am no use to but always makes me feel good. It is truly rewarding. I selected this organization because I know they help so many families in the St. Louis area and am donating my time and energy in memory of a very sweet little boy who's precious little life was too short. Thomas would be five years old on March 9th and every year I do something in his honor. His Mother is a wonderful, caring person and I want her to know that her little boy will never be forgotten and that I will do my part to make the world a little better because knowing her, and Thomas, has made me a better person.

Mom's birthday is also this month. I think I am going to do something for the Ronald McDonald house or family room in memory of her. I don't have the funds to just go and donate but I think I could do something small. Donate personal care items, a few toys or something they need. I am also saving the soda can tabs and will drop them off. I was always curious about the RMH since I was a young girl but never truly understood what it was until we had to use the room at St. John's when Zachary was there. Mind you, it was local and for only 2 weeks but it was a nice comforting safe escape from a scary reality and the services they provide to families is amazing. I think every year I will do something for them in memory of Mom. I hope as our financial situation improves, I can do more for them. So if any of you want to save your soda/beer can tabs and send them to me, I'd appreciate it. *hint hint*

Time for bed...Zachary is not sleeping well so I am beat!

And progress, progress, progress...

2010-02-07T19:43:00.003-06:00

Here we are in Februrary already and it is the month of amazing things!

Jonathan is doing great at school. His writing is coming along and the things he is learning there are truly incredible. He is so compassionate and so much like his mother. I know my mom is looking down and chuckling because the things he is doing to me, I vividly recall doing to her. I hating leaving my mom (even at 12 years old!) and would cry and make up sicknesses and here my son is doing it to me. "but my neck hurts. If my neck hurts then I have a fever and I can't go to school with a fever." Oh boy! And we he gets mad at me he yells, "Don't worry about me, worry about yourself!" and these are words I say to him. Yikes. He is tired of winter and eager to get out to the country. He also wants to go back to Alabama and Iowa to visit family. We plan on camping in Iowa in early summer and visiting the family up there. We love to camp and this way we get to visit and camp...two things we love! Once the threat of snow passes we will probably head down to Alabama. I want to get Z situated at the new day care and use to a routine before we shake it up for him.

On to Zachary...we love our therapists! They are amazing. His speech is just coming along so well. Within the past five minutes he said, "Mommy I got tail" = "mommy I am pulling Harley's tail" and he climbs on the table and then says, "Mommy up oh" = " Mommy I'm up on the table Uh oh!". He loves to feed Harley, snack with him (ha) and give him water. He now calls his cup "pup" instead of "nee nee" but when he wants down from somewhere he says, "wee wee". He even said "Pup water" = "I want water in my cup". He is goofy, loving, a prankster, attention seeker, a biter and so moody! He loves Wow Wow Wubbzy and still bops his head to music and dances when he can. He is striving to be more independent.

As for Jason and I we are just working, paying bills, cleaning and all that normal stuff. We both know how lucky we are to still have jobs and are making huge strives in knocking out some debt. It is truly a great feeling. Jason has become the manager of our laundry...he does at least 1 load a night and then will do the rest over the weekend. I have to admit, I am so grateful. I would rather do laundry than dishes but one less thing that I have to do so I am just thrilled he is doing this! I got lucky and his Momma did a good job with him! So now I strive to keep up with the dishes and cook dinner because he is doing such a good job that I can't fall behind!

A friend of mine that I met online via a moms group about 3 years ago lives about 30 miles from me. Her mom has struggled with Pancreatic cancer for about a year and half. Sadly her mom passed away last weekend. I went to the visitation and was so happy to be able to hug her. The hug was not just from me but also from this wonderful group of women that we are a part of. I know many people thing this bond I have with these women is a bit unusual. I have come to realize all the different ways that people come into our life. If you are open minded, the possibilities are endless. Even though I have never met most of these women, they are such a huge part of my life. If any of you are reading this, please know how thankful I am to have you in my life. I know one day we will all meet and the hugs, tears, laughter and wine (ha!) flow continuously...what a time we will have!

Well, Z is doing his lastest trick that his cousins Sydney and Shelby taught him and he is playing behind the cushions of the couch and will fall asleep soon so I better go.

What a month!

2010-01-31T07:18:00.002-06:00

I can't believe that January is over! What makes it even harder to believe is that as of today, January 31st, we have not had one doctor appointment this month! Dr. Kate is probably missing us! Yes, we have PT and Speech but those are not because a child is sick so they do not count!

Zachary had an OT assessment to see if he has sensory issues. He doesn't. She gave us some ideas on things to try with him and then we will reevaluate him in 6 months. He is doing well. The boys had a stomach bug and it hit JD fast and left just as fast. It lingered with Z and it was not fun. He already has so many gagging/choking issues that I can never tell if it is the normal Z or a bug. We are working on getting him to eat crunchier/spicier foods as they tend to "wake up" the mouth. He has more choking episodes on soft foods because he has to shove his mouth full to feel the food in there. Most kids outgrow that as infants but when you have low muscle tone, it tends to take longer. We have lots of fun exercises to do with him. He does love his spicy food and will even eat Thai food and hot chips! We are working on having him look where he walks. He tends to just take off and not pay any attention to the stuff on the floor. We were told to make obstacle courses for him...thank goodness we have crap on the floor all the time so this is an easy task for us! He does stop, pick stuff up and occasionally will go into the tripod to push himself up rather than belly crawl to the table or wall. As for steps, oh dear. His short little legs make that tough. It is hard to see kids is age walking up and down steps and he can't. I know not to compare but it just makes me feel bad for him.

As for speech, he is saying a lot more words. His new favorite is "Mo", aka No. He has jumped full force into being a 2 year old and it is so much fun (rolling my eyes). He loves to hit, pinch, bite and spit...doesn't he sound lovely? Then he quickly hugs you and says he's sorry. We tried using the little insert on the toilet to see if he would go potty as he told me he wanted to, well he said "I do" when I asked, however, once in the bathroom he screamed "MO!" and grabbed the sesame street potty insert and put it in the cabinet and stomped out of the bathroom.

He is still on the Noonan's chart but on the "typical" chart his height and weight are not on the chart. He is about 32" and 25lbs. His brother however, is off the charts. Jonathan is 48" tall and 64lbs. The difference in the 2 is crazy!

Zachary will start daycare at Jonathan's school on Feb. 15th. He loves the school and all the toys. I love the school too and all the activities and learning that takes place there. Jonathan will start talking to me about the solar system, Martin Luther King, Jesus and God and I am just amazed at what he has learned. I am so very proud of the little man that my Jonathan is becoming. He is so loving and caring, sure he has his moments but he is a great kid.

The other day I learned of a baby girl that died from JMML. She was less than 1 year old and was treated by Z's doctors. I was talking to Jason about it and how lucky/blessed we were. While Z has the JMML gene, he is lucky because as we know his JMML is dormant. I have read stories of kids with JMML and kids with NS and why my little guy has been so lucky with both, is beyond a miracle. I wonder what His plans are for my little Z as the plans He has had for him over the past 2 years have been pretty amazing. My little blue eyed cutie has added so much to our family and I love how he and his brother adore each other.

Lessons Learned in 2 years

2009-12-29T22:17:00.002-06:00

In the past 2 years I have learned so much. I have had many good times and many sad times but each of those times have taught me something and have helped me grow. There are days I focus on the bad things going on or that had happened in my life and I have a "woe is me" day. I know how lucky and blessed I am. I know how good I have it.

In two years my life has gone from wondering if my son will live to wondering what he will be like when he is 5 years old. Two years ago I wasn't sure if Zachary would reach 5 years old. My life was turned upside down and the dreams I had for my newest son and our family were shattered. I learned during that time that while I prayed for Z to be ok, that I also had to pray for my strength to get through it all and I had to pray for me to be able to accept our fate, whatever it may be. When Mom was sick, I learned a little bit of that too.

I remember sitting in the hospital room when the doctor told us that Z's cells were showing cancer and he would need a bone marrow transplant. I was amazed that I did not fall apart right then. After learning what JMML was and how bad it was I remember praying and asking God for the strength to help me through this and that no matter what happened for him to help me accept it. Jason and I just wanted to know what we were up against so we could accept it and come up with a plan. It took a long time but we got a plan and our plan was that this little boy taught me so much and that I needed him probably more than he needed me.

I still do not like the phrase "everything happens for a reason" and am trying to delete it from my vocabulary because there are so many things that happen and I don't see a reason for them happening. Yet, here I am thinking that the events over the past two years did happen for some reason and that reason was to help me be the Mother that Zachary needed. He is a little spit fire and all his "challenges" have taught me patience, kindness, forgiveness and love. I will admit that some days I am weak and forget what I all I learned but I do try!

I hope that 2010 brings much happiness, peace and love to everyone. I pray that any challenges that you are faced with, you have the strength to pull through.

Happy New Year!

And he's five!

2009-12-17T21:51:00.002-06:00

Today my sweet Jonathan Daniel turned 5! Yes 5! Some days it seems like I held him for the first time yesterday and then some days the conversations we have make me forget he is only 5. He is a very kind boy and I am impressed with how good he is when he isn't being 5! Ha!

Jonathan is really doing great. He is big and strong and healthy. He's my picker little eater and is so smart and his memory...wow! He can remember so much stuff that it is scary! I love talking to him and getting his take on things. He sang at church with his preschool and he talks about his friends at school. It is amazing.

Zachary is 2 and is behaving like a typical 2 year old. It is like when he turned 2 he realized, "Oh this is how I'm suppose to behave and I have to make up for all the time I wasn't behaving crazy!". He is lucky I find him so darn cute. He is doing very well and making great progress. He is walking more steadily with his Sure Steps and is hitting new milestones. He now sees a speech therapist and he really warmed up to her! She is giving us some great tips on helping him communicate with us. I feel that is his biggest frustration right now.

We had PT today and she discussed some sensory issues and how they can cause so many other problems. But she also reminded me that he is 2 and some of his issues are normal. She wants him to maybe see an occupational therapist and a sleep study nurse. I am all for the both. Sleep would be really really nice. LOL

We got some news over Thanksgiving and I am asking for your prayers. My blog has been a great source of support for me and a place to express my thoughts. I am asking any of you who read this to please pray for my Mother-in-law. I am not going to discuss her personal issues here because I don't feel it is my place. But she was diagnosed with lung cancer that has spread to her liver. Please keep her in your prayers.

I hope each of you have a wonderful Christmas and are surronded by peace and love. Merry Christmas!

And things are quiet...

2009-11-15T22:30:00.003-06:00

Nothing really interesting to report here. Sicknesses have come and gone or at least I think they have. We still have some coughing here and there and a runny nose here and there. Is it just a normal cold? I don't know.

Zachary has had a few bumps and the knot I found tonight has me worried. It is on top of his head near/on his still not fully closed soft spot. I go back and forth on that darn soft spot and just wish it would close already. He goes for his 2 year old check up on the 25th, which is not covered by insurance at all but let's not go there, and I plan on asking her about it again.

Speaking of medical bills, I was turned into the collection agency for $130 from several bills in May. I had been paying $10 a month but was told I had to give them $25 and when I said I couldn't I guess they didn't care. I gave them $10 (along with the other 5 places I gave $10 to) each mont but October. I had 2 RX's to pay for and it ate up some of my medical money. And then November 5th I get the letter. I then decided that I don't give a damn. I will pay all the other bills first and that place (SLU Care) will not get one penny of my money until I am caught up. I will pay the current bills but not that outstanding one.

Tomorrow we see the urologist for a follow up from Z's surgery last year (undescended testicles) to make sure things down there are all still good. He seems to think everything is okay because that sure is his new favorite toy!

We then have PT on Thursday. Zachary has made all sorts of progress. I was so excited to see him bend down and pick up a toy a few weeks ago, rather than dropping to the floor and picking up. Then today he was on the floor and went into the tripod position and stood up! Yay! My big boy is getting so big!

Jonathan is loving his school and making huge progress on his writing skills and drawing pictures. It is wonderful to see him blossom. I have pictures that he drew of our family and I am so impressed w/his blossoming skills that I hung them up on the living room wall. It has taken him forever to enjoy writing and drawing and to see him enjoying it and progressing is amazing! He even writes his name now. I can tell he is all about routine and I think when he finds his groove, he takes off!

I will update more later this week as my baby turns 2 on Saturday.

H1N1, Endocrinologist & Pink eye! Oh My!

2009-10-27T21:35:00.002-05:00

Oh my is right! Last Monday Jonathan was diagnosed with H1N1 and we were ordered to stay home for 5 days. His fever was as high as 102.6. Luckily that was as bad as it got. The high fever lasted 2 days and then he had a low grade fever for one day and then he was fine...a bit off and not his normal self but he was fine.

Friday we had Zachary's endocrinologist appointment. Many children with NS require growth hormone therapy (GHT) so the geneticist referred us to the endo. She was wonderful. She treats NS kids and immediately picked up on the features of NS that are present in Zachary. She also pointed out that he has a high arch in his palate. I read how many NS kids had feeding issues due to that but it was never brought to our attention. I always assumed his eating problems were from him being so sick and the reflux but I guess this contributed to it as well. I always find it interesting to see what new information a new doctor on his team will pass on to us. Anyway, at this time Zachary is on the "normal" growth chart so she is not pushing GHT. If his growing tapers off then we will have to re-evaluate that. She wants to see him in a year and at that time we will do blood work and check his heart again and eventually do bone age test. But for now, we proceed as normal! Do you know that this means in 2010 Zachary will only need to see 2 specialist versus the 5 he saw this year? Well I think he will need to see the ENT too so maybe 3 but still...it will only be one visit with them...not multiple!!! Wow!

Then on Saturday afternoon Zachary's eye started having some green drainage...nice! Sunday he woke up with both eyes sealed shut. I took him to Walgreen's Take Care Clinic and he had pink eye in both eyes...nice way to end a crazy week!!! But he is on the mend and things are back to normal.

We did get a call back that Jason tested negative for the NS gene so that means Zachary's gene mutation was spontaneous. He just wanted to be his own person and make his own mark in the world.

It's been a while...

2009-10-06T20:27:00.002-05:00

And I do apologize. Things have been busy here but a good busy. Our house, or rather the boys, were hit hard with a cough. Nothing too serious but if we go in public I know people are looking at us and thinking, "Stay away from them! They have the swine flu or something!" but no we just have coughs...it's all good.

We met with a speech therapist and she told me that she didn't think his delay was quite 50% but because he is already in the First Steps program, he will still qualify for therapy for his speech if we feel he needs it. I will get more info at our meeting later this month. She gave me lots of tips. Mainly we need to teach Zachary meaning of things...like he calls his cup/drink "nee nee" and if he is hungry he says "murmur". Our focus now is when he says one of those terms to correct him and try to get him to repeat it. He is talking more but is just not as descriptive. All in all, I was pretty pleased. I knew he was delayed and I expected it to be worse so this news was good.

Tomorrow I take him to pick up his SureSteps and let's just hope he has no issues wearing them! His walking is getting better and he wants to walk more and more. I love that he will shake his head no and mean it. He is learning so much and sadly, joining the terrible 2's. Ugh!

We took down his crib last week and while they go to bed in the same room it takes them forever to go to sleep. It is crazy! You can hear them talking, playing and fighting for well over 2 hours each night. But I remember laying in the room I shared with my sister Debbie and talking for hours too. So it's normal and it's good for them.

A Good Appointment

2009-09-22T19:28:00.002-05:00

I am really beginning to like these good appointments. My goal is that one day I stop waiting for the other shoe to drop but I am just not quite prepared to do that just yet. One day.

We met with the geneticist yesterday. I really like her. She is down to Earth and very personable. It seems that most of Z's doctors have been this way and either it is how most pediatric medical professionals are, or we just got way super lucky! Z weighed in at 24lbs and is 32.5 inches tall. For a "normal" child he is I think in the 10th and 25th percentiles but for an NS child he is around the 50th percent mark and we both feel this is great. However, she is referring us to an Pediatric Endocrinologist to discuss growth hormone therapy. He may not need GHT now but could very well need it in the future. When I called to make his appointment, it was comforting to hear the receptionist say, "Noonan Syndrome, okay." and I even told her, "this is the first office I called and they knew right away what NS was." and she laughed.

I told the geneticist that I had concerns about his soft spot still being open. She felt it and said she saw no reason for concern but if Dr. Kate felt concerned then we could follow through with another scan. However, she pointed out that earlier this year he had a brain scan (Really?) and it was normal. Maybe that was the $550 test he had done? I really do not recall this being done! My bad! So for now, that is off our list of worries.

We went ahead and got Jason tested for NS and should have the results in 4 weeks. If he is negative, then there is no need to worry about JD. If he is positive, we have to get JD tested and his heart checked. She explained to us that she feels the low muscle tone is Z's only "effect" from the NS. He has the facial features and such but none (thank God) of the major disorders and she does not see them just appearing later in life. She pointed out that the gene that causes his NS can cause JMML. Does this mean he can get JMML (the real JMML) later in life? Yes. Her (and Dr. Rob) told me that the chances of a NS child, w/the mutation that Z has, developing JMML is very low but it can "come back" and usually does by the age of 5. As my friend Melissa told me, "He's almost 2!" so yes, we are closer to 5 YO! :-)

His orthotics will be ready in about 3 weeks and I think (knock on wood) the state is paying for them. I took the advice of my friend Gina and added some advertisements to my blog. If you click on them, little Z earns money. It isn't much but every little bit helps! There are so many people worse off than us and I am grateful for all that we have but somedays I forget what all I have because I get consumed by what I have to pay. I am really trying not to be negative and I appreciate everyones hugs, wonderful advice and support. It helps keep things in perspective for me.

We did put in a request to have Z evaluated by a developmental therapist. By the age of 2 they should be saying 50 words. I am not worried about Z as I know when he gets stronger in his walking the words will come but I feel like he understands so much and just can't get the words out. So I want to see if there is more I can be doing for him. If it is normal for him then I am fine with that but if we can help him then I am all for that!

September Therapy and Stuff

2009-09-17T21:29:00.004-05:00

Not sure where to start because I meant to write a few blog posts but ran out of time. Last Friday Z had the Orthotist. We had a bit of a mix up w/the RX for the Sure Steps and I'm still not 100% sure if I got it right. Then we get there and this kid LOVED the waiting room. He was so at home he decided to poop. And guess what? I left his diapers and wipes in the car! Anyway, they first did a mold of his foot after watching him walk a bit. Then as we were leaving she came back and said we have to do a cast because they want it above his ankle. This is why I think I messed up the RX because you see I think the SureSteps do not go above the ankle. Guess I'll find out! So we did a cast of each foot and the whole time Z sat there crying and saying "Ow, ow oooowwww!"...so dramatic. He did pick out the material for his SureStep (think I answered my own question and maybe I did not mess up the RX) and it was a baby sports theme or as Z put it "bayball".

Monday was the 2 year anniversary of my Mom's death. It was a very rough and emotional day. Much harder than I expected it to be. But after dinner I asked Jonathan to go to the cemetery with me. Mom is buried at a National Cemetery here and it is so amazing. We got there around 6:30 and were amazed with the deer that were out. I was glad we had the truck so J could roll down the window because a few of them came right up to the truck and if he had longer arms, I bet he could have touched them. I took a few pics and this one I liked the most. I have been struggling with a lot of financial worries and have been praying on what to do. I sat down and asked mom to give me a sign and tell me what to do. When I posted this picture on my facebook page my niece pointed out that it was the daughter deer with her mom watching over her in the background. It hit me then that this was my answer from Mom. It was so powerful to be there and to share that moment with Jonathan. He remembers her. As we sat on a bench talking he said he was sorry my mom died and that I missed her. He told me not to cry because I would see her again in heaven. Such wise words from such a young mind. We hugged and on the way home stopped for $1 sundae and McD's. He earned it. As much as that boy can wear me down, he knows when I need him and shows me so much love. I love him so much.

Today we had a physical therapy appointment. It went well. Z is making progress and that is for sure. He is talking more. At 2 they want them to say 50 words, Z is not there yet but she told me not to worry yet. We are to work with trying to get him to stand up without holding on to anything, practice more body parts and naming things. He is very much entering the terrible twos...not terrific twos! He is snotty and demanding and refuses to try to stand up by himself. He will knee walk to the table and pull himself up. This child is determined to do things his way! He does talk more and loves to have his toes tickled. He has a few songs he tries to sing, ABC's and some Laurie Berkner songs...he loves her! My favorite thing that he just started doing is with me and my dad. When I hold him and we hug/kiss my dad goodbye he puts one arm around my neck and one around my dad and hugs us at the same time. Then he flashes his million dollar smile. It is the sweetest thing. He is so very loving when he isn't whining...ha!

Two Years

2009-09-13T08:05:00.003-05:00

Tomorrow, September 14, is the second anniversary of my Mom's death. Some days it feels like she just died yesterday and other days it seems like it was so long ago. No matter how it feels, the pain is still there...still fressh and the sadness still sneaks up on me when I least expect it. Yes it is a bit easier but still a lot harder than I imagined it would be.

I catch myself or my sisters using "mom-isms" or doing things that Mom did and it makes me smile. She will always be here with us and she will always be in my heart. I know that she has helped me cope with everything that has come my way in the past 21 months. And I know that as we move forward in life, she will be there. I talk to her and pray to her and ask for guidance. She had so much knowledge and experience and I just wish I could have one more conversation with her. One more time to tell her goodbye and that I love her. I did tell her all those things earlier that year when we thought we were going to lose her but I would give anything for just one more conversation with her. One last hug. One last smile.

The last time I saw her was a week before her death. We were out to dinner. She was not feeling well and seemed a bit off. So when I got the call that following weekend, that she was being taken to the hospital and she had stopped breating, in my heart, I knew this was it. I did not want to believe it and I just kept hugging my pregnant belly and praying that she would be okay or that we would all be strong enough to make it through whatever happened. I think being pregnant and having the comfort of Zachary in my belly helped me cope with her death. And we are okay. We are making it. It's hard, it's sad and it sucks but Mom left us with so much. She was amazing and I am going to make sure my boys know it. We will probably go visit her grave today or tomorrow, look at the photo album I made for her and light a candle or release a balloon. Jonathan likes to release the balloons so that our friends and family up in heaven can catch them and enjoy them. I love the thought of that too.

Mom, I love you, I miss you but I am okay. Thank you for being my Mom. And I'm trying to take care of myself like you use to always tell us to do! :-) You will never be forgotten and will live on forever in my heart. Rest in Peace Mom!

Little Man Needs a Job

2009-09-08T21:05:00.003-05:00

I met today with our First Steps coordinator and the PT. It was to re-evaluate Zachary IFSP or plan of action. Our coordinator was amazed with what all Z has started doing since she first met him. And our PT was impressed when I said Z was walking about the house. I thought maybe, just maybe she would say "oh lets wait on the orthotics and see how he does.". Nah, she said he absolutely still needed them so we pressed on. The PT had written on a piece of paper the codes and costs of the orthotics and I peeked at it...$1,600! Seriously, I nearly puked right there. I had to calm myself and tell myself that this was before any coverage that we might be eligible for. Hopefully, MO First Steps will cover a large majority of it, if not all of it. We go Friday for measurements.

After we determine our costs, I am going to see if there is any way I can submit it to my insurance. I have not gotten a real clear answer on that yet so I'm hoping that whatever the state doesn't cover, the insurance will. If they could at least meet us halfway and let us make payments I'd feel much better. Cross your fingers that we can get some help with this. I am eager to see our little man get the help he needs and just take off. Otherwise, my cute little man needs to get out there and get a job. He is great at sweeping floors with his tummy. :-) Give us a call if you need your floors done. Ha!

Here comes Frankenstein

2009-08-29T20:54:00.002-05:00

It amazes me what Zachary can do in a week. He went from taking 5 steps at a time to pretty much just taking off from the table and walking to where he sees fit. It's that cute little wobbly frankenstein walk. He will just takes off. Mind you, he doesn't get up in the middle of the floor and take off but he will pull himself up and take off. It is amazing.

We went to Chuck E Cheese for my nieces birthday and he walked from one end to the other to see his Papa. He was so proud. He got over excited and tried to run and did a face plant and got his first bloody lip. He didn't seem to mind but it sure did bleed. So each day he goes a little futher, gets a little stronger and builds more confidence. I let him walk on the sidewalk outside and he fell and skinned both knees. Poor guy.

Jason's parents were in town this week and took Jonathan to the arch. He was very excited and loves teasing his grandpa about his "pink bloomers". It's pretty comical to listen to the 2 of them discuss going to the barbie store and buying pink bloomers. I have to make sure to write this down in his baby book or something.

I suspect that on Zachary's 2nd birthday he will be walking very independently and will show everyone what he can do. He continues to amaze me and when the boys are not fighting, I love watching them play together.

August Physical Therapy

2009-08-20T20:52:00.003-05:00

Today we had PT. Kelly and Amanda (a student) watched Zachary play and interacted with him. Kelly was pleased with the progress Zachary has made. She pointed out some things that he is doing that I didn't realize were "progress". It's nice to hear these things. I love how she has insight on so many things that as a mom, I just don't know. It's so refreshing.

Zachary is still taking a few steps between things and is much more sturdy. He isn't always running. He will drop to his knees rather than "fall" to stop. Kelly had him walk to her and when she said stop, he did. So we get to practice that now. I loved watching her get him to say words and do things that I just don't think about doing. I guess I do too much for him. I remember that with Jonathan.

I'm sure I will get the medical part of this messed up a bit but I'm gonna give it a try...Kelly says that Zachary pronates and while this can be normal in kids his age, she feels his pronation is a little more than that. Pronate means to turn or rotate (the foot) by abduction and eversion so that the inner edge of the sole bears the body's weight. I knew that this was normal and most children (as Jonathan did) outgrow it by the age of 2 or 3 but most children were walking by that age too. Because of this, Kelly wants Z to meet with an orthotist (Orthotists are allied health professionals who provide care to patients with disabling conditions of the limb and spine by designing, fabricating and fitting the patient with an orthosis, a custom made brace.) so he can be measured for SureStep. Thankfully she is going to submit this through FirstSteps and our caseworker there. I am praying that they pay for it. I have no clue how much these things cost but I bet it is not cheap! However from what I have read, the SureStep can be worn with regular shoes and it doesn't look like you can't even see anything...it's all on the foot and inside the shoe.

Zachary is making great progress and I am so proud of him! He is trying to talk so much more and understands even more. He likes to play a game with me where he says, "Mom, Mom, Mommy" and then when I say what he says, "I of woo (aka I love you)". It's the sweetest little thing. He also tries to do it with Jonathan but they are usually too busy fighting.

Well that's it for now!

It's not me

2009-08-18T20:18:00.003-05:00

I got the call today that the genetics test they did for me came back normal. I do not have NS.

Now we determine if we have Jason tested. My pocket tells me no way. Zacharys test cost $1700 and mine cost $300. Is it worth it? I mean the stress of having to pay another $300 to find out if the NS was passed down or if it was a spontaneous mutation is probably going to cause more problems then the results would. I mean what will it solve by finding out if the NS was passed down? Nothing. Nothing will change and the only thing to come from it is that we will now have paid (well in our case owe) a total of $12,400 in medical bills since Jan. 2009 rather than $12,100. I don't need that.

In fact, I shouldn't have done the test on me. I should have just accepted the fact that my son is just who he is and for some reason he was chosen by God to have NS and we will continue to accept him, love him and help him as best we can. He is our gift and it is time to stop questioning it and just accept the diagnosis and move on.

I'm sure in the next few days I will get yet another bill in the mail and this time I will feel like I just wasted $300 we don't have because quite frankly that's what it was. If it was a test to help one of my boys, obviously it would not have been wasted and I would feel this way.

I try to be realistic about it all and tell myself that we don't have it so bad and that yes, it could be worse. But when I sit in my living room with all the medical bills it becomes overwhelming. They all want a minimum of $25 a month or they will send us to collections. Are you serious? I owe 5 companies over $500 each and I can't afford $125 a month plus regular appts and my prescriptions. I mean seriously, give me a freakin' break people! I am tired of making phone calls, explaining my situation and asking to make some sort of arrangement. It's exhausting and quite frankly, I'm tired of it. Don't get me wrong, I am so thankful and overjoyed that my buddy is ok but I can still be frustrated, right? If not, too bad cus I am. We have cut nearly all expenses that we can and maxed out credit cards paying these bills and still owe $3,000 in bills. I think we'll make it, one day and I pray that one day we can look back and talk about how hard times were and how many ramen noodle dinners we ate. But you know what, even though I stress over what bills to pay next and what cheap meals to make, I would do this all again and a million times over if it meant having my Zachary here with us. Yes we are lucky, even if we can't answer our phone because we don't have money to pay the person on the other end. It will be okay, right?

"I'm not your baby anymore Mom"

2009-08-12T21:32:00.002-05:00

Yes those were the words that my sweet (sometimes) Jonathan said to me. My heart broke. Ok not really but what is he ready to pack his bags and flee from this life of insanity? Not so quick, I get to go first!

Jonathan IS a big boy and he is so brave. He has lost his 2 teeth and the 2 permanent ones are coming in. He did great at the dentist. I wasn't crazy about her but thank goodness her assistant was wonderful! And besides, I have not had a dentist clean my teeth in years! Wait, let me explain that, it is usually the hygenist that does it but this time it was the dentist. She'll do for now. My sweet boy sat very still and let them do their job. I was so proud of him. On our way home he pretty much cried b/c he said he was so tired and just wanted to sleep. What?! He then told me he had a sore throat and yes a fever. Strep. He never gets sick so when he woke up at 3am and said, "Mommy call Dr. Kate!" I knew he was sick. He doesn't mess around! Dr. Kate confirmed that today. She said his throat was way nasty and if it isn't gone in 7 days to call her back. He was a very good boy there too. He was very glad that it was Z getting the shots and not him. Ha!

So today he missed his first day at his new preschool. He kept asking me what the teachers/kids were doing and if they missed him. He is still adjusting to being there all day long but he is getting better. He likes it and talks about it all the time but complains he is there too long. :-) Poor kid is in for a shock when he realizes this is his life for the next 14 years...school! Then it is a job. Ha!

Zachary had to go in for his 21 month check up and for 4 more shots. Will he ever be caught up? He was cranky and not afraid to show it. It all started with the scale. Seriously, you only weigh 23lbs there is NOTHING to cry about! I cry when I step on the scale but you shouldn't! His spleen and liver were normal, tubes were good and all seems well. I asked about the PT being concerned about his high pain tolerance and she said she thinks it is just him. As she reminded me when he was born he broke his collar bone but it was undetected until 5 wks old...after it healed. So it may just be him. She said she hopes she doesn't see us until Sept/Oct for flu shots. *fingers crossed* He made sure he said thank you to everyone he saw and tried to grab 3 suckers on the way out.

I'm hoping that Z and I are spared of strep because the 3 of us shared a drink on the way to the doctor. DUH! He has the 2nd eye tooth on the bottom coming in and is a bit of a fuss...ok a BIG bit of a fuss. When you got one crying his throat hurts and the other just crying, it gets a bit stressful. And to all my friends on FaceBook, I really don't drink as much as it sounds like I do. I promise!

Z continues to take a few steps alone. If you ignore him he will walk from the table to the couch several times. He'll get there in his own time. I think my quiet time is over as Monster #2 is calling me. Good night!

20 month Evaluation

2009-08-04T20:22:00.003-05:00

Monday night Ms. Elena, from Parents as Teachers came over to conduct Z's 20 month evaluation. JD was a complete terror bur Ms. E is a mother of 6 and kept saying, "I understand. Don't worry. Mine do that too.". Bless her heart.

Anyway, we managed to complete's Z's evaluation. He is scoring above average on Personal/Social skills and Problem Solving...he's my charming little thinker! He was on target for fine motor skills. And as we expected, he was delayed in gross motor skills and communication. I asked if she felt he needed further evaluation and she said in her opinion she felt that as he grows more confident and stronger in his physical abilities then the rest will fall into place and to give him time. She was very excited to see how he has grown and what all he was doing since her last visit in May.

As I mentioned in another post, Z will take a few steps between 2 people or objects. His stop button is currently not working so he goes until he stops. I managed to get it on video so enjoy!

A new life

2009-08-02T21:28:00.002-05:00

Tomorrow, August 3, would have been my parents 52nd wedding anniversary if my mom were still alive. How my life has changed in nearly 2 years. I have been through things I never dreamed of and I have come out stronger. I have witnessed a miracle in my son that I never thought I would need and one that I feared would never happen. While I feel like I lost a lot, I gained so much as well. My heart still aches for my Mom and I am sure it always will.

In the past 2 years, I have seen my Dad grow in ways I never knew possible. I am so very proud of him for the man he always has been or for the man he has become. I can't imagine going through all he did with Mom and losing his wife of 50 years. He pulled through and has become a stronger person and is settling into his "new" life. His new normal. So many changes have taken place for Dad. In these past 2 years he has lost friends, family and his wife. He rose above all this and has had the courage to step out into new territory. He bought himself a house. After living at the same place for 40 years (maybe longer but I have no clue how long) he is getting a fresh start. He found himself an adorable house, painted it, carpeted it and has moved in. He loves his house and his face lights up when he talks about it.

This weekend we went through more stuff at his old house. I think Friday night we were all overwhelmed...in a way it was like saying goodbye to Mom all over again. We found more stuff, more pictures and many more memories.

As I type this, I am looking out the window and can see how bright the moon is. I am also thinking how right things are in my world. There was a time when I didn't think I'd feel this content and this happy again. Dad is venturing out to start his new life, I had a nice family weekend with no time outs and no fighting with the boys and Zachary is showing more signs of walking and talking. The boys play together and when I see my little Z light up as his big brother plays with him and I see his million dollar smile, I know that my life is good and there is nothing else that I need. I hope that Dad's adventure into his "new" life leaves him feeling as good as I do right now. He deserves that.

July Physical Therapy

2009-07-30T21:06:00.002-05:00

Today we had Zachary's PT appointment. Kelly arrived and Z was full of energy and anger. As he gets older he is getting more and more frustrated with his lack of ability to communicate. Kelly pointed out a few things that made my mommy antenna stand up full alert.

Let's start with the good stuff, Z is making great progress. He is able to do all the exercises that she assigned us last month. Today we put a step stool in front of the couch and Z used it to help him climb on the couch. He showed Kelly how he can take a few steps from me to the couch, how he can climb up and down the steps, how he can stack some blocks and a few other tricks and words. Our concerns are still his lack of stability in standing and walking. Kelly said she had no concerns with his speech and most of what he was doing is just par for the course and he will get stronger as he takes more steps. In order to help him we are to let him stand in front of the wall or one of us and let him take 3 steps and have him stop...this will help him learn to slow down and eventually help him stand rather than him going until he finds something/someone to grab on to. We will also continue what we have been doing. If he doesn't have any progress in this by his Aug appt. then we will discuss getting him more therapy.

Kelly pointed out that she thinks Z has a high pain tolerance. While she was here Z showed her how he likes to headbutt the floor when he is mad, how he bites himself and smacks himself when he is mad and frustrated. We talked about how he doesn't crawl on all 4s and will belly/army crawl on the concrete and get all scraped up and he never cries. He falls and doesn't cry unless it is a slam to the floor with his head. He takes a lot. I just assumed it was because he dealt with his fair share of needle pokes, surgeries and tests and maybe he was just use to pain. She didn't say what her concern was but I kind of figured where she was going and maybe I'm wrong. I've read that Noonan Syndrome children can be autistic too. I did google high pain tolerance in autistic children and it seems that some children with Autism do have a high pain tolerance. I've watched him for a few months and wondered if he was on the Autism spectrum or if NS and Autism cross in some ways or if he just Zachary being Zachary. In the end it won't matter what label gets stuck on Z because he is Z and we love him for who he is and always will!

We go see Dr. Kate in 2 weeks and I will ask her opinion on all this...more therapy or if we continue to wait and see how he progresses. We will also have her check his liver and spleen as the oncologist wants that done every 3-6 months. Then in Sept we go back to the geneticist for a follow up. We will review all his tests and discuss what the next steps are and what doctors he needs to see.

Jonathan is still adjusting to school. He cries a bit in the morning but then seems to be fine. He tells me he only cries one time a day now and that he tries really hard not to cry but that I am gone too long and he misses me. It's sweet to be loved so much but I told him not to waste his day being sad because Mommy will always come back for him.

Will it be me?

2009-07-20T20:41:00.002-05:00

Thursday I went to have my blood drawn to see if I carry the Noonan Syndrome gene. I expected this to be a quick in and out test but my veins had other plans. All my veins decided to hide and it took 4 people, 6 sticks and an hour and 15 min later before the 14 cc's of blood they needed were drawn. I was praised for not crying, screaming, kicking, hitting and biting anyone and was offered a sucker and graham crackers. I will admit, it started to hurt a few times and I wanted to kick but I didn't. They even brought in the vein finder and still my veins were nice and deep. For this, I owe my mother...thank you for my deep thin veins, each time I have blood drawn I think of you! Love you Mom! Now I wait and see if I "gave" NS to my son or if it was a spontaneous mutation. If my test is negative then we go on to test Jason. If he is negative it stops there. If one of us is positive then we test Jonathan and then have our hearts checked. The bruises I have today are so pretty!

Zachary is who he is and I love and adore him for who he is but when I see kids younger than him or his own age doing things that he isn't, my heart breaks a little. I know many people ask what he is doing out of concern and curiousity but some people aren't so kind. They ask to compare children and it hurts. Most people are not trying to hurt me and I know that. I see my Z with babies half his age and I see them doing things he can't and I feel so bad for him. Don't geet me wrong, I love hearing about what other little ones are doing and I am proud of them, I just wish Z was doing them too! I know he doesn't care but I feel like I have let him down somehow. He fought so hard that first year of his life and now he has to struggle to do normal baby things. It isn't fair. He is the sweetest most precious boy and I adore him and love him for who he is and wouldn't change him one bit. I just don't want him to struggle to "fit in" or "keep up" the rest of his life. I am not sure how to get over this and not worry about it all so for now I will just keep doing what we are doing and pray he continues to get stronger everyday.

Z will be 20 months tomorrow and he is cruising along the furniture, climbing up and down steps and might just be the fastest army crawler in St. Louis! He sees steps and will turn around to go down them. He will sit on his step stool (with my help) and stand up and take a step to me. Kelly, the PT, gave us this exercise to do and he is so proud when he does it. So yes he is improving and he will get there in his own time. He is talking more and says "please", "thank you", "I do", "all done", and signs more. He adores his cousin Arianna and is learning so much from her.

Jonathan is struggling w/his new preschool/day care. I know it is normal and I also know it is the nap time (no tv) and the lunch time (he has to eat what they serve) that is stressing him out. I just keep telling him that I will always come back but he said he still misses me. He is a sweet heart when he isn't cranky. He will ask me why God picked me to be his Mommy and I tell him that he picked me. So we now talk about how before he was born he and God looked down and he saw me and his Daddy and he told God he wanted us to be his family so God gave him to us. I love it when he talks about picking us. This kid has a great memory and a wonderful imagination. He is something else.

Well the NS tests can take up to 4 weeks. As I learn more I will share it with you all.

The Sky is a Little Brighter

2009-07-20T20:25:00.003-05:00

It's ironic that my last post was about the importance of family and that evening my Aunt passed away. My Aunt was a wonderful woman full of love, spunk and a laugh that would brighten anyone's day. She was kind and very loving. I could look at her and my uncle and see the love they shared and it trickled down to their children and grandchildren. They have a wonderful loving family and I hate that we only see each other once or twice a year. My one cousin pointed out that the last 3 times she saw me was at funerals. Sad but true. I know that Aunt Pat is up there with my mom and telling her all about how we all are doing and they are laughing and having a good time. You will be missed Aunt Pat!

On my dad's side of the family I am the youngest of 54 grandchildren. I am always amazed by the amount of 1st, 2nd and probably 3rd cousins I have and now understand why no one could remember "which one" I was when I was younger. I laugh now because I am usually called Sandy, Tammy, Debbie and then finally Jenny by nearly everyone of them! Dad always did it too so I've gotten use to it. They know I am one of Mel's kids and sadly I am now also known as the mother of the little one that was so sick. It's okay because it IS who I am and I am proud of who I am. It's become a game now when the family gets together...who is that? Which one are you? I think at the next family reunion we should wear name tags!

So tonight the sky is a little brighter as it has another star and another family is a little sadder. Kiss your loved ones and always say I love you.

Family...that's what it's all about!

2009-07-12T19:54:00.003-05:00

We just returned from a wedding in Iowa. Jason's cousin got married and it was a very sweet and beautiful ceremony. I always get teary-eyed at weddings and this one really got me going. I love seeing everyone all dressed up and so happy and so full of hope and love. Congrats to Stephanie and Charlie...we wish you much happiness in the future!

Seeing family always gets me emotional and watching my kids interact with family gets me even more emotional. I know some of you who know me are saying, "Really can you get any more emotional?" and the answer is yes, I can! I loved watching the kids dance and play with cousins that they only see 2 or 3 times a year. I love watching them reach out to people and warm up to them. I love seeing them light up when they see their great grandma and grandpa or hear Jonathan talking about the times we visited them and the things we did with them. I am so glad my kids will have all these memories with family.

Zachary warmed up to Jason's cousin Allison last year at his Aunt Nancy's funeral. I swear he remembered her because he spent a good hour "dancing" with her and playing with her last night. I wish I had taken pictures but I got caught up watching him dance and he danced until we left at 10:30! He was so tired but he was only happy if he was standing with someone on the dance floor and doing is head bopping, toe tapping dance. Our little rock star put on quite a show.

It's funny because I see so much of Jason in both the boys and in Zachary I see Jason's dad and his uncles yet I also see my dad and his brother in him. Maybe the Fosters and Keevens are related? ha ha ha!

Family is just the best, even when we don't tend to think they are, deep down they are what matters.

Now on to the less sappy stuff...Jonathan starts his new preschool/day care tomorrow. I am so nervous for him. Silly I know. Jason and I will take him and drop him off for his first day.

Zachary has PT this week and I'm eager to see if she thinks he has made any improvements and where we go from here. I also have on my To Do list to call the geneticist to find out if the insurance company approved testing for NS for Jason and I. I keep forgetting about that.

Anyway, I best go, Jonathan wants to bowl on the Wii before bed!

Happy 4th of July!

2009-07-04T09:22:00.002-05:00

I sit here listening to the rain (and Dora) and watch my boys sit on the couch eating pretzels (sharing!) and watching Dora. It is a nice quiet, peaceful moment that is ready to pass and I'm sure it will before I finish typing. Either way this is what life is...finding the small peaceful moments in the midst of the everyday craziness! Just 2 minutes like this can help me recharge and reconnect and gives me hope for days to come.

Jonathan just returned from Alabama where he stayed with his grandparents for a week. I think he came home with an extra suitcase full of new stuff from Grandma and Grandpa. I was happy to hear he was a very good little boy b/c once he got home, all his manners and good behavior were lost. Darn it. I was glad he had this opportunity to stay with them. I remember staying with my grandma in the summer and it was a lot of fun.

Both boys are doing well. Zachary is walking between two people and will actually steady himself and take a few steps. He gets so excited and is so proud. We are working on the exercises Kelly gave us and he is getting stronger and building confidence. He had 3 shots this week and I think is now only 6 months behind on his shots.

I hope everyone has a great day today and enjoys time with family and friends and of course watches some fireworks!

Happy 4th of July!!!

Physical Therapy

2009-06-18T20:49:00.003-05:00

Today we met with Kelly, the PT. She was great. Z was cranky as he had been up since 4:45am and this was 10:15. Yikes! I know he liked her, he was just tired. Kelly taught me so much in such a short amount of time...I was very impressed!

I learned that the way Z (and Jonathan) sit is called a W position and it isn't an ideal position. They are kind of on their knees but sitting on their butt so like feet behind them. We always comment on how we could never sit like that. Well it is really hard on the hips so we have to make sure Z learns to not sit like that...and Jonathan.

She gave us some exercises and tips on how to help him strengthen those muscles. He was all attitude and frustration. I went to carry him off for his nap and as we passed through the kitchen he said "Mama" and pointed to the refrigerator. So I had to feed him a bit before nap. Lately Mama has been his word when he doesn't know how to say something. He will also say "Neenee" which means drink but he will use it for other stuff. He just wants so badly to communicate with us. He can answer yes or no and does sign language for "more". I am now a true believer in teaching babies to sign. I think this would help us communicate. I am going to work on it a bit more with Z. The pointing and guessing is just not fun.

His molars have broken the skin and he is a happier boy. He still has his habit of waking up at 10 or 11pm and crying until he is in bed w/us. Well I am going to try and let him cry it out (CIO) because I need sleep. Tuesday night it last 2 hours and then he woke up again at 1:30 am. Last night I had no energy. Bad I know but really, I need sleep.

I must say, it was an uneventful week and I am so thankful for that.

And the Z man returns!

2009-06-13T21:36:00.002-05:00

Thank goodness! I took Zachary to see Dr. Kate last week and he only lost 3oz. Oops my bad. Well she said she was happy to see him and would have done the same thing. He was cranky and demonstrated that by headbutting the wall when I told him he doesn't hit Mommy. Dr. Kate got a chuckle out of that!

She said his throat was healing nicely but still had a bit of healing to do. I was to keep giving him tylenol and could add motrin to it as well. As long as he kept drinking and eating she was confident he'd be fine. And since then he has had quite a little appetite and a bit more attitude. He is weighing in at around 20lbs so he is doing just fine.

He starts physical therapy on Thursday and he has been crawling a bit more on all 4's. So at least we know he can do it. He is trying to say more words and do more things and I am just very glad that he is feeling better.

We found a preschool for Jonathan that is full time. He will start the first week in July. He is very excited because they have computers in the rooms and he loved the playground. I am nervous about sending him to a new place but I know he will do fine. I just hate doing new things and hope he doesn't feel the same way as I do.

Anyway, that's about all that's happening in the Foster house. We are just chugging along and everyone is doing well.

Wow, what a ride!

2009-06-09T20:29:00.002-05:00

I think (knock on wood) that Z is finally starting to feel better. On top of his surgery and all the pain from that, he has 2 molars coming in (bottom 1 year molars). The last 2 weeks have been hell. I am not sugar coating this and don't care to. My boy has been in severe pain, cried non stop for hours and has been truly miserable and hard to be around. We had to tell ourselves...he hurts, he needs us and he can't help it. But I can honestly say that I can see how someone snaps and abuses a child. No I don't approve of it or think that is an excuse but I can see how it happens. Thankfully we were able to see this and step away from him...even if it meant he sat alone in cried. This was a true test for our family. I thought all he went through at 5 weeks was hard on use but this has been horrible.

We think Z has lost 2 to 3 lbs. According to my scale he is down from 21lbs 6 oz to 19lbs 8 oz. The ENT nurse told me repeatedly (yes I called a few times) that this is normal and expected. But she doesn't know my boy and his history. When your child is not even on the growth charts and loses more weight it doesn't feel normal. So today I caved in and called Dr. Kate. She called back and asked me to bring him in tomorrow. People have told me how skinny he looks and we all think he looks longer but really, he looks very unhealthy.

And as the old saying goes...when you do finally call the doc, the child gets better. Today I pick him up from Stephanie's and he says, "Hi". She told me he was really good and he ate! He then asked for a graham cracker and ate 2 on the way home. He ate cheese, taco meat, bread and shared a banana with Harley. He didn't cry much at all. We played and had fun. He played alone and then we read a book and he went to bed! Wow! But we'll see what Dr. Kate says tomorrow anyway. I have a feeling we will be getting him on vitamins.

The good news is that last night I put the boys to bed around 730 or 8. At 930pm Z got up and i brought him to my bed. He went back to sleep. Woke up at 11pm and screamed and cried and was chewing on his fingers. I gave him orajel and tylenol and after 20 min of fighting he went to sleep. He slept until 615am! Wow this is what sleep is like huh? AND...DRUM ROLL PLEASE...HE DIDN'T SNORE!!!! Yep, he didn't snore! I had to check and see if he was breathing. Let's hope all good things are to come. Now we just need to fatten him up a bit!

Tales of Jonathan

2009-05-31T08:22:00.003-05:00

Yesterday Jonathan and I were talking after his bath and discussing his freckles. I told him that freckles are Angel kisses and an Angel must have came down and kissed him while he slept. He said they did and there were 3 angels. I asked if they had names and he said "Yes, Shimmer, Kiki and Glasses.". Ha ha! I told him before how the Angels are bowling when it storms. He said Kiki is the best bowler.

Later that night he told me that when his tooth comes out then Grandma Keeven will become the tooth fairy and bring him a quarter. He said the Angels gave her big angel wings so she can fly down to him. I asked him if Buster was with Grandma and he said "Yes, he throws the coins down and Grandma catches them to put them under the pillow but you have to sleep in your bed or Tooth Fairy Grandma will give you a rock! Do you know that Mommy?". And she uses her wand to zap the quarter under your pillow. Then Grandma returns to Heaven.

I love that the 2 of us can have conversations like this. I try to remember these special moments when the two of us are butting heads! He's a great kid with a huge heart.

Sorry for the delay...Z is good!

2009-05-30T19:05:00.003-05:00

The surgery was pretty much over within 45 minutes. Dr. M came out and told me that Z had super large tonsils and aednoids and of course, fluid in both ears. He wanted him to stay over night b/c of all this and b/c he said kids w/NS can have breathing/congestion problems after a tonsilectomy. I had no clue about this. About an hour after that Z was out of recovery. They said he was in lots of pain so they gave him fentenal (sp?) to help him. He slept in my arms as I sat in a wood rocking chair for 3 hours. I was stiff, thirsty, hungry and in dire need to use the ladies room. I couldn't wake him b/c I remember how horrid this surgery is so I suffered and made sure Jason came up ASAP when he got off work.

As he slept alarms would go off when his oxygen dropped below 90 and when his heart rate was above 160. So after several dips of his oxygen going in the low 80's they gave him a mask that I held on his face. His HR would go up when he tried to wake up...he was in pain and mad. He had a low fever of 100.6 and was just plain miserable. He would only drink a few sips of water and then that was it the entire 24 hours. The night was rough but we were released the next morning at 9am. The nurse forgot to give us his ear drops and when I called she said, "Can you swing by and get them?". Um no...you see I live 45 min from the hospital and my baby just had surgery. No thanks! So she called in an RX and when I went to get it at 6pm it was $100! I cried and said "Sorry I can't get it!". I called the nurse and luckily they still had it so I made the 45 min drive to get them.

Z would have wakeful moments and finally started drinking when he saw Jonathan's capri sun. LOL He ran a fever of 100.9 and we were told if it was higher than 101 to take him to the ER. We dodged that bullet. He finally showed some normalcy today for about 3 hours. Otherwise he clings to me and whimpers. Fever has been under 100 and he is gladly taking fluids. Last night he woke up and laid there staring at me w/his big blue eyes. My gosh it breaks my heart. He looked so tiny and like he may have lost a pound or 2. He is only eating cheese, tiny bits of ice cream and that is really it.

I hope he has more good moments tomorrow as I have to go back to work on Monday. It kills me so it may only be a half day if he is still clingy. But they warned us he may bleed and he hasn't so that is great.

Now in the hospital he was snoring and sounded a bit congested. The doctor told me that if he still snored then he would need to have a sleep study done. I am hoping he is just swollen. *fingers crossed*

Prior to his surgery he has been crawling on all 4s more often and he starts PT on Thursday. I just hope my house is clean by then. Ha ha ha! Doubt it!

Sorry for the delay and thank you everyone for your prayers!!!

12 hours and counting

2009-05-26T20:28:00.002-05:00

Tomorrow we are to arrive at the hospital at 7am. I believe Zachary's surgery is scheduled for 9am but who knows if it will be earlier or later. I am told the surgery can take up to 2 hours...that is what my paper says but I think that can change. If memory serves me correctly, in previous surgeries they let him wake up in the post-op room, let us come in and then when he is stable we move to a private recovery room. They said to plan on being there most of the day and he may stay the night due to his size.

Little Z is sleeping peacefully, unaware of what is about to happen tomorrow. Jonathan is off w/aunt Debbie and he gave his baby brother a kiss goodbye and told him to have fun.

Obviously I am worried b/c it is my tiny baby going under yet, once again and that always causes anyone a bit of anxiety. I know it is just tonsils, adenoids and tubes and I want to believe that it will be just that with Zachary. But of course his past medical woes come into play and freak me out. I can't shake it all. I vividly recall when he got his broviac line put in and I walked into the post-op room and saw my sweet baby red, red as could be and his heart rate was over 200 and his temp was over 104. The nurses kept asking if anyone was with me. No, I came alone. We had been down this road so many times and I felt I could do it alone. Man was I wrong! However, all surgeries after that were fine. He had no repeat of that...thank goodness.

Zachary is a very lucky little boy, he has his special guardian angel, Grandma K looking after him. I know Mom will protect him and keep him safe and everything will go just fine. She has done a pretty great job so far and I know it will continue.

Not sure if the hospital has Wifi or if I'll even bring my laptop so if you don't hear from me until tomorrow, don't be worried. I want to thank all of my wonderful friends and family for all the prayers coming our way. I know Z will be fine but I'll still worry!

18 Months Old

2009-05-21T17:39:00.003-05:00

Today Zachary is 18 months old. Yesterday we took him in for his 18 month check up and since he is on a delayed schedule for his vaccines he got 4 shots! He cried at shot #2 and stopped at #4. What a guy! He weighs (with clothes on) about 20lbs and 6ozs. He was 31 and 3/4" long and doing well. He showed off for Dr. Kate and tried so hard to give her kisses. He goes back in 6 weeks for 4 more shots. She was very impressed with the number of words he is saying and that he could sign "more". He just started that a few weeks ago.

Today we saw Dr. Rob (aka Oncologist) and his staff was thrilled to see how big Z was and how well he was doing. We talked a bit about Noonan Syndrome and how it can cause the JMML-like symptoms. Dr. Rob agreed that is what it was with Z but didn't want to dismiss anything. He told me that even the percentage is very low, in some cases the JMML will "reappear" before the age of 5. He called me around 3pm to tell me that Z's CBC was great! All normal! Since this CBC was normal he felt that Z just needs to have his liver and spleen checked every 4-6 months. The pediatrician can do it. We basically can cut Dr. Rob out of Z's team of doctors. This made me sad. I know that we got very lucky when Dr. Rob and Dr. Bob were assigned to Zachary. If it weren't for him, I am not sure where we'd be. Thank God we were led to them.

On his 18 month birthday we got this amazingly wonderful news. It seems life can't really get any better. Dr. Rob and I both feel that the worst is behind Zachary and after his surgery next week, I think things are going to be incredible. It's like the past 2 years have had more downs than ups and while it has been getting better I just kept waiting for the other shoe to drop. I've been living under a JMML cloud waiting for one of the tests to come back with bad news. But Zachary has been spared. My precious little boy has taught me so much. His strength has amazed me and finally after all this time he is getting the good news he deserves. He has been through so much in his little life and I hope that now I can all breathe a little easier and stop looking over my shoulder for bad news.

Thank you to everyone for the prayers and support. We all thank you!

May Madness

2009-05-11T21:14:00.002-05:00

We had a busy few days but very enjoyable. We went to Iowa for Jason's Grandpa's 90th birthday and had a nice visit. While there Zachary showed off and proved to his Mommy that he is going to meet and surpass the goals that the physical therapist had set for him. First he climbed up the steps and back down on his tummy...Yay Z! He then crawled on all fours but he kept his head down and dragged his forehead along the ground. LOL Funny little man! I guess because he hadn't seen Great Grandma and Grandpa since November he had to show off for them! I am so glad my kids are blessed with knowing their great grandparents and are creating memories that will last a lifetime! All kids should be so lucky!

Today we went back down to Glennon to see the ENT. They did another hearing test and Z failed. We suspect it was because it was near nap time and the fluid in his ears. The ENT agreed that he felt Z had sleep apnea. His tonsils were swollen still and he said they were rather large for his age. He said we could do a sleep study or just skip the sleep study and do the tubes and remove the tonsils and adenoids. I opted for the latter simply because we are all pretty sure the tonsils need to come out and it would save us time from work and money. In the end, I am sure he would have needed the surgery so we might as well omit the study. The surgery is scheduled for May 27th. Now I have to wait and worry.

Fifth's Disease

2009-05-07T06:00:00.002-05:00

As if the boy hasn't had enough issues he ends up with Fifth's Disease. I was so proud that we were 3 full weeks w/o a trip to the pediatrician's office and he woke up from his nap on Tuesday with a beat red face and inside the red was a lacey rash. My first thought was that he had measles, mumps or rubella because this is one shot he has not had yet. But nope, just fifth's disease that is a virus that really doesn't do much unless your newly pregnant or already have a compromised immune system. Most people have had it and do not even realize it. We saw Dr. M. and she also pointed out his left ear was red. I told her we go Monday to see the ENT at Glennon on Monday. So she said if he got to feeling worse before then to give her a call.

While we were at this appointment my niece/sitter, Chelsea, was at her appt. She is 36 weeks pregnant and they said she is 4cm dialated! DOH! I told her that I did not want Jonathan delivering her baby...ha ha ha. She is very brave and acted like it was no big deal. If this was me, I'd be sitting in the hospital parking lot w/my bags. Hopefully this little boy won't make his debut too fast!

I met with First Seps yesterday afternoon too. Z will have PT once a month and our 6 month goals are to have him walking and crawling up steps. I selected a therapist and hopefully she can fit our schedule. A friends sister in law works with her and when I realized the school she worked at I asked if I could have her. Fingers crossed she can take us on.

After dinner Jonathan and I went w/my sister Debbie and her family to my mom's grave. Mother's day is just a little hard. Mom is buried at a National Cemetery and this place is huge and gorgeous...I know sounds strange. I mean it is just breath-taking and so serene. It was about 7pm and on our way out we saw a cluster of 8 deer! They were all over. I bet we saw about 30 of them! They were not afraid and let Debbie get really close to take a picture. They just seemed so relaxed and peaceful and they were watching us! Jonathan said he wanted to catch one of them! Yikes! I knew that mom was watching these deer and she was at peace. I think any future visits to mom will be in the evening so we can watch the deer.

Well I better go. I have to get ready for the day!

Physical therapy evaluation

2009-04-29T18:08:00.003-05:00

The lady from First Steps, Kate, came tonight to do a physical therapy evaluation on Z. She did lots of tests and it made me aware of how delayed he is in gross motor skills. Fine motor might be a bit behind as well.

After her assesment she said he definetely has low muscle tone (that is an NS symptom/characteristic/side effect) and she said he was really working hard to use his upper body muscles. She also said she thinks he has some sensory issues. Since this was just the initial evaluation, I have to wait for her to contact our "case worker" and then we will work out a plan for him. I didn't ask but I assumed this meant that he qualified for PT under the MO First steps Program. I think they will then determine what the insurance will cover and what our costs will be. We should hear from her in a few days.

I am just always amazed by the different things these "experts" show me. She gave us lots of exercises to do. She showed me how Z won't even twist at the waist to reach for something on his side, he just uses his arms.

Even though I expected this and deep down (not even that deep down) I knew Z was really delayed, it still left me a little sad to hear an expert say he did have low muscle tone and was delayed. I don't understand why it upset me and broke my heart for him, yet again. If this is the worst thing he has to deal with, the worst complication of his NS, he is not that bad off. I just look at my teeny tiny little boy and don't want him to go through any more than he already has. It isn't fair. Z doesn't know he is delayed, he is happy and silly, just like a baby should be. If it doesn't bother him then why should it bother me?

It's okay because I am going to get him all the help he needs to be the best he can be...he deserves that and so much more.

Returning to our chaotic life

2009-04-28T06:41:00.002-05:00

We had a good time in FL. The boys did well on the flights and enjoyed the beach. Zachary ran a fever the entire time we were there and threw up his antibiotic once in a while. I can't wait to have his tubes in his ears. He needs some relief.

Dad and Jason caught some sharks (of some sort) and we ate them for dinner. Not too bad! It was strange not having mom there but 2 of my aunts came over to visit a bit and it was nice to have them there. The weather was gorgeous but the no-see-ums were awful! I always thought my mom made those things up but then I saw on one of the cartoons that JD watches that they DO exist! They are nasty little boogers that like to bite you! Next year, we bring bug spray!

I can't find my camera right now (GRRRR) and once I do I will post some pics.

Today is my last day of working at preschool...thank goodness! Then Wednesday we have the physical therapist from MO First Steps coming out to evaluate Zachary. Thursday we go check out a preschool that I want Jonathan to go to. He is very excited to see it. I hope it works out.

On May 11th we take Z to Cardinal Glennon for his second ENT appointment. I am hoping we can get some answers and quick relief for Z. He is tugging at his ears again and I'm not sure where to go from here. I hate keeping him on antibiotics but he may need them until they get tubes in his ears. I guess I'll have to call Dr. Kate if he runs a fever any more. Poor guy.

A little boy named Jack is having surgery today to have a feeding "button" put in his tummy. Please think of Jack and his family today and say some prayers that this will help Jack keep his food down and gain weight. Every time I see Jack's sweet face it reminds me of how tiny little Z was at that age. Jack I'm thinking of you and your family today! ((HUGS))

Heading off to Florida!

2009-04-18T08:54:00.003-05:00

Finally my family is getting the vacation we all deserve! We are off to sunny FL for some R&R with my dad and to bring him home!!! The boys are doing well and I think Z is feeling better...he is less whiney! LOL Jonathan is VERY excited!

My sister is having her gallbladder removed on Monday, please keep her in your prayers. I'm thinking of you Sandy and will be calling to check on you.

It seems my sisters are getting surgeries left and right...settle down ladies! Tammy is recovering well and I wanted to thank all my friends for their prayers for her.

One of my friends just found out she is pregnant, she has had 2 miscarriages so M, congrats sweetie...I am praying for you and your little bean!!!

Another friend's husband is being deployed in a few days...L I pray for H's safety. I also pray for your sanity. :-) You will do fine with the kids but I am thinking of you.

Take care everyone and have a great week. Wish us luck on the flights...or at least that those around us don't get too irritated. As Dr. Kate told me, screw em! We have just as much of a right to be on that plane as they do!

I might sign on and share some pics from the beach...curious to see how Z does with the sand.

Later!

Lots of answers

2009-04-14T21:42:00.002-05:00

Today was a whirlwind...completely exhausting. Sunday Z had a fever between 101-102 all day. He has been super whiney and still snotty and congested...I've accepted the snot and congestion as who Z is. The whiney part, God help us all if that is who he is. :-) We managed to have a low key Easter. The Bunny hid eggs but no one was inclined to look for them. The boys got lots of beach stuff from Grandma and Grandpa (thank you!) and the Bunny got them beach towels, sunscreen and some new toys to take on the plane with them. In reality it is more crap we have to pack. I think we will have 3 suitcases and 2 carry ons. Whew, I can already see Jason getting grumpy as we lug all that stuff into the airport with 2 kids in tow. Fun times! I'll be stressed and Jason will be grumpy but in the end, it will all be fine and dandy.

This morning I got the kids ready and was in the bathroom and knocked over several of Jason's razors. I swore I picked them all up. 10 minutes later Z is outside the bathroom door and I realize I hear him sucking on something. He has a razor! I gently ask for it and he gladly hands it over. I scoop him up and see no damage but did find a wee bit of blood in his mouth...nothing major. So we take JD to school, head to the ENT arriving 15 min early as they asked us too. I'm glad they told us 15 minutes early because my time is so less valuable than theirs and I was forced to sit in the waiting room from 915 until 1045. Nice! Z was antsy but all in all happily charming everyone he came in contact with. He loves getting people's attention. Once we met w/the doc we gave him the LONG history of Z and focused on the last 6 months and how sick he has been with coughs/colds and crap. He looked in his ears (Z politely turned his head when he saw the little instrument), checked his nose and then this throat (Z again obliged when he saw the stick and opened his mouth) and said he has fluid, large tonsils touching and swollen lymph nodes (not much new there). I was shocked by the tonsils. He said due to his history and age, he would rather the go to Cardinal Glennon as the hospitals he goes to do not have a pediatric unit. He said he thinks Z has sleep apnea...what?! I told him how he doesn't sleep for more than a good 3 hour period, he snores so freaking loud and is so restless. He said it could be the fluid but he really suspects it is sleep apnea. I told him how he would stop breathing for a second or 2 at night and cry and move around. On May 11 we will go to Glennon to meet the pediatric ENT there. We will look into a sleep study and possible removal of adenoids, tonsils and then tubes put in. If they don't feel he needs adenoids and tonsils out (due to his age) then he can do the tubes b/c he does for sure need them.

I asked about our flight and if he should go and he said "In a perfect world we wouldn't suggest him flying but this world isn't perfect so go and have fun!". I like this man!

Because I was so frazzled I didn't think to ask for an RX so I called Dr. Kate. The receptionist said, "Oh we were just talking about you and said it had been about 2 weeks since you were here. we were hoping Zachary was doing good...sorry we jinxed you!". They got us right in and Dr. Kate agreed his throat was very red and since we were traveling she wanted to give him an RX (God bless that woman). She is also working on his First Steps paper work and asked if I would be willing to get him OT even if he is not approved. Of course I agreed.

Tomorrow: Jonathan's Parent/Teacher Conference

Oh and b/c this appt took so long I was late picking up Jonathan...last kid at school! And he teacher asked me if the baby was ok b/c Jonathan told her he got hurt this morning and was bleeding! The little turkey ratted me out!

Sorry for yet again, another LONG update. As one of my friends said, "at least you are really getting answers!" and yes we are!!! So as exhausting as this is, I need to focus on that...and our trip!!!

I suppose that's good news!

2009-04-13T20:24:00.002-05:00

Today we had our interview with MO First Steps. I learned something that I wasn't aware of...it isn't a free program. No that is not a big deal but what got me was she told me it use to be free. Gee, I wonder why it no longer is? Hmmm, I am sure it is due to the former Governor. Whatever!

Anyway, this interview was to determine if Zachary qualifies for an evaluation. After an hour of questions she basically told me she doubted he would qualify without Medical intervention. She said she was very impressed with Z's verbal skills, understanding of what I say and his fine motor skills. She said she understands my concerns due to his previous issues but from what she could tell, he was rather advanced. Now you know at this point I was ready to crawl under the table...I made a big stink for nothing!!! But she did say that what they can do is get medical information from his doctor's and then maybe he can be evaluated for just physical therapy. But we'd still have to pay a monthly fee. Now that is fine because if he isn't walking by 18 months then I will be taking him to PT per his pediatrician but the nice thing about first steps is they would come to my home and yes, the fee would be cheaper. Oh well, we'll get little man whatever he needs.

The more we talked the more I realized the stuff he can do and how in tune he is w/his surrondings and how he does interact with us so well. I truly think that he is just not walking b/c he isn't confident enough and truly not interested. The one time I make a big fuss (ok well not the only time) it wasn't necessary. Doh!

Tomorrow we go to the ENT and discuss his ears. I am prepared to hear that he needs tubes but I am more curious to see if he still has fluid in them now as he was running a fever yesterday. I just want him to have a break from being sick b/c you know, when he is sick he whines all.the.time!

We also have Jonathan's parent teacher conference on Wednesday and she said she was very eager to meet with us b/c she thinks Jonathan is such a great kid. He's a charmer!!!

I'll try to update before we leave for FL! Yay!

Don't Poke Mama Bear

2009-04-08T20:49:00.003-05:00

Some people talk about this protective mode that mother's go into and compare it to that of a Mother Bear. We will do anything to protect your children so please, don't poke Mama Bear.

This Mama Bear has been through quite a bit w/her young cub and was wondering who she would lash out at. Well after much consideration and time to let things dwell in my mind, Mama Bear decided to take it out the woman at Missouri First Steps (MO's Early Intervention Program). You see back in January when the geneticist diagnosed Z with NS she also put in a call to First Step's to get Zachary qualified or at least an evaluation. When this woman called me back and we had a 10 minute phone conversation she then decided that Zachary did not qualify for FS. She didn't know what NS was and didn't offer to send someone to our house for an interview but did wish us well and said he just wasn't delayed enough and if he fell further behind then to feel free to call them back.

I took her words as the end of this quest. Never thought more of her turning us down but kept pondering the fact that she didn't offer to look into what NS was nor did she offer us a meeting. She just dismissed my son, my son who has had a very rough go of it, like he was nothing. This is what bugged me and ate at me. Finally I spoke up. In the past week I mentioned this to Dr. Kate, to the genetics nurse and to our parents as teacher representative. All of them were furious at how easily Z was dismissed. They woke up Mama Bear and made her realize some twit was messing w/her child. This twit sent me a letter and some information on therapy places that were over 30 miles from my home...excuse me? I was so mad that in my fury and disappointment, yet again in the state of MO, I threw out all those papers so I don't know the twit's name...probably better for her.

Well last night I got online and I went to the first steps site and read how each family is entitled to an at home interview. Say what? Well those words hit mama bear and sent her over the edge. I wrote a long email to MO FS's and told them how this twit dismissed my son. I told them how hard he fought for his life and how yes he is delayed and it may not be the 50% they required but they owed it to my son to evaluate him and that the twit who called me should have said, "Well Mrs. Foster, I am not familiar with NS but let me do some research and learn more about it and then I'll call you back and we can discuss this.". I told them that I hoped all kids in MO were not treated like this and that I was just truly disappointed in this entire program.

At 9am this morning my phone rang. It was a woman, the director, of the St. Louis office of MO First Steps. She apologized for the way we were dismissed and agreed it was handled inappropriately. Wow! I accepted her apology and told her that I didn't even know if Z was truly delayed in gross motor skills or just a bit slow but I did know that kids w/NS have low muscle tone and I needed them to tell me if they felt he was truly delayed. If not, that's fine. I should have my interview set up by the end of this week. Mind you, if Z isn't walking by 18 months then we will be taking this into our own hands and getting him in therapy but if the state is willing to help us, I am going to let them.

As a friend pointed out to me, let's hope the person who interviews us is NOT the same twit I spoke with! Let's also hope this twit learns the errors of her way and does not dismiss any other children so easily. Let's hope she also learns that you do NOT poke the Mama Bear, especially a very tired Mama Bear!!!

All tests are normal!

2009-04-02T06:34:00.002-05:00

The nurse from the geneticist office called me to report all of Z's tests were fine. However, we had to go see Dr. Kate on Tuesday for coughs and colds (still) and she said she can't do anything more for Z's fluid in his ears. So we see the ENT on the 14th. I am sure the diagnosis will be tubes since it is common for NS kids and Z has the low set ears. Poor kid. I know tubes are common but it still ticks me off that this kiddo can't catch a break! His cough is horrible and I hope we can go 2 weeks without another trip to Dr. Kate. I just get tired of going there every week and watching the bills come in. AND I just want Z to be healthy...and less cranky! Ha!

Anyway I explained to the nurse how MO First Steps (Early Intervention) denied Z any help and they did it via a phone interview. The nurse was a bit ticked. She said she will call them and get the long form and push for his acceptance. Bless that lovely woman! Not sure if it will work but my goodness I hope so. Z is 16 months and not walking and while I know this can be normal, nothing is ever normal for this kiddo. I want him in therapy b/c of his low muscle tone but I am burning the candle at both ends and would like a bit of help from the state...the therapists would come to our house!!!

Jonathan is thriving and doing good. He has a winter cough and is on some allergy meds to try and help it. He has about 7 weeks of preschool left. I am taking him and picking him up and you know you look rough when the teacher tells me I look exhausted! Ha, if she only knew! We are trying to find him a new full time preschool b/c this taking him and picking him up is very exhausting. Luckily my work is very understanding and are doing all they can to help me out. Now if they allowed nap time that would be even better!!!

We leave for FL on the 18th to visit my Dad and then he will fly home with us on the 24th. Its our first family vacation and as nervous as I am about flying, I am so excited. We all deserve this week at the beach and i can't wait to sit in the sand and watch my kids play and experience the ocean for the first time. I can't wait to see my dad and watch him and the boys play. 17 days and counting...

Echo's and Ultrasounds

2009-03-28T12:38:00.002-05:00

Today we had the final (*knocking on wood*) assessment appointments for Zachary. We went down to the hospital at 8am to register. First we had his echo and Zachary did incredibly well and sat calmly on my lap the entire time. The tech was highly impressed. She commented that she did not see anything lift threatening or too abnormal. I am assuming his murmur is still there but will need to call on Monday for the results.

We then did the EKG and again, he sat very still watching the wires hang from him. This tech said nothing but as I've said before I am not too worried about his heart since he has had a few echo's before. If something was wrong, I would be completely surprised.

Then we sat and waited for the ultrasound. This tech didn't impress me too much and grumbled a bit about "how fun this would be". Gee, you think it is fun for any of us? Sure you may run tests on screaming kids but you are not sent him waiting and facing the unknown and possibly some horrible diagnosis. I guess everyone can't be happy but whatever to her. I must admit I was very happy when a radiologist stepped into the room and said he wanted to stay for the ultrasound. He helped me hold Z and entertain him as Jason was trying to entertain Jonathan.

Zachary did pretty well for the most part but towards the end he got a bit restless. I don't blame him 2 hours of being looked at and scanned can wear on you especially when it's nap time! The abdomnal US consists of measuring his spleen, liver, bladder and I believe kidneys. If you recall, last year when Z was extremely ill his spleen and liver were enlarged and this is a part of JMML. In November Dr. Rob felt the swelling was gone but in Jan. the geneticist didn't like his little "poofy" belly.

I heard the radiologist and the tech making comments to each other but couldn't catch the exact words as Jonathan had noisy toys and Z was crying. Obviously, I am a bit concerned about this ultrasound. I can't explain it except to say it is just a gut feeling I have. Hopefully I am wrong.

My plan is to call on Monday or Tuesday to see if they have the results. Then we will go from there.

Time to go, Zachary is done with his lunch.

Appt. 3 and 4

2009-03-20T15:06:00.002-05:00

Today we had Zachary's Audiology appt. He has had a cough/cold for about a week. I had caused it on the 2 molars he was getting in. We arrive at the hospital and they do this test on him to see if he has fluid in his ears...DING DING DING! We have fluid in both ears! They continue with the test but warn me if he fails part of it, it could be from the fluid. He does good on the loud noises but is very easily distracted by the nice lady playing with him. Plus he realizes when he hears a sound and looks to the right, Winne the Pooh dances (he is in a box in the corner) so he begins to play peek a boo with Pooh!

They put a headset on him that attaches to the outside his ear where the nerves are. This will bypass the fluid. He has a bit more response doing it this way. The Audiologist suggest we take him to the Pediatrician and get some meds and then come back in a month. Sorry but I quickly think, more money and more time off work! I know that sounds selfish and I would do anything for my sons but when does it stop!

So off to the pediatrician. He hears his cough and immediately checks his lungs...sounds good. Z loves this guy and lets him do all kinds of stuff to him. Such a good boy. Then he looks in the ears and says that there is fluid but they were not truly infected but because of his cough he puts him on some amoxicillian to prevent the fluid from turning into an infection. This made me happy because I really feel like someting is wrong w/Z since he has this cough again so the meds will help ease my mind a bit.

Have to go get him from his nap...he is being rather fussy and I think he wants to cuddle.

Next week we have the echo, ekg and abdominal US. Another day off work, 4 hour doc appt. and I guess a few hundred dollars. This kid better pick a good nursing home for me when I'm old!

Happy Birthday Mom!

2009-03-18T20:48:00.003-05:00

Tomorrow is Mom's birthday...the second one without her. I still find myself thinking "Oh wait until I tell Mom" or "I need to call Mom" only to realize she is no longer here...yet again. Yes it has gotten easier but I think part of me will always "forget" she is gone and remember that she is gone will always hurt a little bit.

As I type this I am watching Moms favorite soap opera...The Young and The Restless. She loved that show and I can remember watching it when I was in kindergarten and home with her. I went to catch the bus AFTER Y&R was on. A few of my sisters and I still watch it and talk about it. I think in some strange way it will always connect us to Mom. When a few of us are together and we start talking about it someone, usually one of our husbands or someone who doesn't watch it, reminds us that it is just a tv show. Well yes it is, but it has been a part of our life for a very long time and part of our relationship with our Mother! So in a way, yes it is real.

Tomorrow I think Jonathan and I will make a cake and he asked if we could sing happy birthday to grandma. I told him of course and that she would hear us and smile.

Happy birthday Mom. I miss you like crazy and will love you forever. You will remain in my heart and always be a part of my life.

Appt. 2: Opthamologist

2009-03-14T07:18:00.003-05:00

Yesterday we had Zachary's opthamologist appointment. It was one of those LONG appts that I am growing use to. Unfortunately, Jason isn't so use to them! We arrived at 9:10 for our 9:15 appt and didn't leave until 11:15.

Zachary was a good little boy despite missing a morning nap and mommy forgetting his snack! He had his eyes dialated and tolerated the drops very well. This Doctor was wonderful and he was voted one of the "Top Docs" of St. Louis last year. We have been really lucky with the doctors we have been seeing for him.

Anyway, they said there is not sign of a lazy eye and no need for glasses. Everything looks good. He has droopy eye lids that they can fix when he gets older if he feels the need. I have it too so we can be droopy together. He did say his optic nerves appeared "different" than most "normal" people and assumed that had to do with the NS. His geneticist will know more when he sends his report on to her and we will discuss it after all his appointments are done. 3 more to go!

On a lighter note, he is cruising along the furniture and has a bit of hesitation going from one thing to the next. He gets really scared. But I had the coffee table really close to the couch and he walked along the table and hesitated but then went for the couch. He was so proud he began squealing and clapping his hands. We are making progress!!!

We are trying to set up blood test for Jason and I and hope to have that done soon.

Well off to start the day and get ready for my nephew's wedding!

Appointment 1 for March

2009-03-13T07:44:00.003-05:00

Yesterday I took Zachary to the big hospital for an ultrasound of his sacral dimple. They were puzzled as to why he was coming back in at 15 months when they did 2 of these xrays when he was sick.

I explained to them that it felt as if his tail bone was pretty low and you could feel it when you wiped him and sometimes there was a spot that would bleed from like cracked skin. Dr. Kate wasn't overly concerned but felt it was worth checking out.

The tech called in the radiologist and they confirmed no cysts or anything and it seemed normal. His dimple has extra folds of skin but his sacrum (did you know that is what they call the end of your tail bone?) is a bit lower than most folks so it is a bit more noticeable. As for the sore spot, keep using desitin and neosporin and hopefully it will clear up. It doesn't seem to bother him so I guess that is good!

One good thing was when the radiologist walked in and I read his name tag I was thinking to myself, "OH you are the man we got countless bills from last year and I had never met you!". Nice to put a face with the man whose salary you are paying huh? LOL

Today we meet the opthamologist. Stay tuned for a very exciting update later this evening!

Random Act of Kindness

2009-03-08T10:01:00.002-05:00

Tomorrow, March 9th, is a very special day. It is the birthday of my friends' dear son Thomas. Thomas would have been 4 years old. K and I met on a trying to conceive board about 5 years ago. We supported each other during the journey of trying to get pregnant, getting pregnant and counting down until our sons were born.

Sweet Thomas came in to the world on March 9, 2005 and touched more lives' than anyone could imagine. He grew his angel wings on March 11, 2005. His Mom is a wonderful person, friend, daughter, mom and wife. I adore her and appreciate that because of Thomas, I met this wonderful woman. I will never forget Thomas for touching my life and sharing his Mom with me.

K and her wonderful husband have asked those that want to honor Thomas to do so with any random act of kindness. It can be small or large but they just want to make the world a better place in memory of Thomas. I love this idea. For 3 years I have donated books to a children's book drive at my work. I let Jonathan pick them out and I write a message in them. He has learned that these books are "for Thomas". He knows that Thomas is in heaven with Grandma and Buster.

Thomas has made the world a better place and I encourage each of you to do some random act of kindess tomorrow. Life is short and so very precious and if we can each make one person smile, let them in line in front of us at the store, open a door for someone then maybe, just maybe, that person will pay it forward and your one kind gesture will be spread on to many others. Think about it.

Minding my own business

2009-03-07T08:15:00.004-06:00

Last weekend I noticed that my neighbors newspapers were piling up in his yard, he had about 4 of them. I have lived here 10 years and my neighbor and I have barely exchanged more than 40 words. He is a loner, single and in his late 40s. My roommate, back in the day, nicknamed him Light bright because he left every light on in his house and never closed his curtains! We could see right in his house if we opened the curtains in our room or the boys room. We often saw him eating dinner and watching tv.

Truly he was a good neighbor, never complained and was friendly to the kids at Halloween. I would see him at the grocery store but we never talked. He quit smoking after he got sick a few years ago. His uncle came to stay with him and we talked more to his uncle than we did him! He had few visitors. He mowed his lawn 3 times a week and began taking walks. He left for work when I did and was home around the same time. He did his laundry at the laundry mat on Tuesdays...I would see him leave w/his baskets and then see him at the laundry mat if I drove by. No, I didn't know him but after 10 years I knew his routine. It amazed me how much I did know about him.

This week I have been struggling with the fact that his papers and mail are not being picked up. His car is in his garage, yes we looked in the window of the garage. I saw his cat on Wed. so maybe he was just on vacation? I made my sister come over and look in his front window with me. TV was off and we didn't see anything.

I had my brother in law call his dad who is a police officer in my town. Shortly after, 3 police cars appear. The PO came over to interview me after looking in the windows. I told him "I really hope he is on vacation!". PO said, "No ma'am he is on the couch.". What? I couldn't concentrate on his questions and felt like I was in an episode of Law and Order. I don't know when I saw him last, at least 2 weeks. He was neat. I told this poor PO everything I knew and I asked why no one would look for him! This poor man sat in his house alone and dead for over 2 weeks? They had to break in the back door and had to let the house air out a bit. God that poor man!

Why didn't his boss call about him? Was he laid off? I know if I had called sooner the outcome would have been the same but still, I wish I had called sooner. I had to rack my brain for his name b/c we use to get his mail once in a while. I am still in shock. I am glad that Jason and Jonathan were in the country. I am glad that when my sister and I looked in, God spare us from finding him.

I just pray that they find his family, that he has family and that he can get a proper funeral. My heart breaks for him.

I hope that if I don't show up for work for two weeks that someone will call someone about me. I just don't get why no one did anything? I mean I was afraid I was being to nosey so I minded my own business but at what point does this become our business? It has to be someone's business, right? I guess we all get wrapped up in our own lives that we forget to take notice of the small things. I think I will become a little bit more nosey now!

They also couldn't find the cats. So I told animal control I would watch for them and call her. Poor kitties.

RIP S.W. I will miss you even though I didn't really know you.

And it's official!

2009-02-26T20:53:00.004-06:00

I shouldn't be surprised, nor should I be upset as I expected this. However, to hear the genetics counselor tell me that the test they did for Zachary came back positive for NS stung me and left me numb. What was I expecting? I don't know. I didn't expect it to leave me feeling so raw and so, well angry.

There was an alteration in his PTPN11 gene in which indicates NS and is also seen in JMML kids. She said since it was suggested we all get echocardiograms we may simply consider getting tested for NS, Jason and I. If we have it or are carriers then we can proceed to have Jonathan tested and further testing in us. If we don't have it then we can eliminate all these other tests for us and Jonathan and know that Zachary's case was more of a "spontaneous mutation". At first I didn't want the blood tests because we are not having more kids but now, I want to know. I want to know how my son got this.

I asked her about all the lung issues he has been having and she said while she can't say it is not linked to NS but she has never heard of it. I told her I did not want to blame everything on NS because I know this could just be Zachary or the time of year but I also didn't want to ignore it because being sick since October 2nd is not normal, in my book! She said we may end up sending him to an immunologist or a pulmonologist. He saw a pulmonologist when he was in the hospital. They did 2 CF (sweat tests) on him as the first one came back "inconclusive" but we never heard more on the repeat test. Not saying it is that but would like to rule that out.

As for the pneumonia, he is acting better but tonight his fever was 100.1 (not too high) and his coughing was of course still there. I can tell the nebulizer is working but he keeps throwing up the meds so we had the pharmacist add some banana flavor to it...he still gagged but kept it down. :-) He sits so patiently for his treatments and laughs and plays.

Now it's time for a fun video...pardon my singing!

The Return of the Sickies!

2009-02-25T07:04:00.005-06:00

I was just bragging that we made it 2 weeks in Feb., well really 3, without any trips to the doctor other than a well baby exam. So the day after that well baby exam Zachary starts running a fever. Normal after shots. Wed. he has a low fever and he does on Thursday too. Friday night it jumps to 100.6. Well I know JD had a cough thing the weekend before so it must be that or teething. I let it go. Hard for me not to run to the doctor with him but I told myself it is a virus. Sat. the fever reaches 102 and the cough is getting deep...not his normal Z cough. Sunday we have a repeat of Saturday except he clings to me for 4 hours straight! Monday woke up and no fever.

Monday at noon Chelsea tells him his fever was 99.6. Ok maybe this virus is over. I get home Monday and C tells me that Z took 2 long naps, barely ate lunch and fell asleep playing on the floor. Hm, not my kid I tell you.

Tuesday after a LONG night of crying and fevers I take him into the doctor. She suspects he may have the flu, as several kids at Sally's did but she opted not to do a test simply because Z has Pnuemonia! WTH? The one time I don't rush him in to see the doctor and he is truly truly sick. So let's see, since Oct. he has had bronchitis 2 times, croup, a virus and pnuemonia. GREAT what more are they going to throw at this kid? Why doesn't he get the break he deserves?

We are home all week with him per doctor's orders and he gets the nebulizer every 4 hours and is on some meds. He is puking from the nebulizer doing it's job but I need to time his meds w/that a little better and his meals. So between snot and puke my laundry is piling up again. Jason worked so hard on getting it caught up this weekend and now, I fear it is going back to the 20 loads.

Z is sleeping a lot but prefers to sleep on me. Poor bub. He is so tired and just out of sorts. He lost nearly a pound and it breaks my heart to see how skinny he is. :-(l

In March we will go for all the remainders of his tests and luckily we hit the $2,400 deductible and now we only pay 20%! Look out Dr. Kate b/c after me totally missing this illness, I am taking my kids in EVERY time they sneeze! I will become that Mom...again!

If you can spare any prayers that my little guy eats and gets better soon, I know he would appreciate them. Maybe he can catch a bit of a break when spring arrives! *fingers crossed*

As for Jonathan, he is learning to trace letters and numbers at school and is trying to write his name. He is such a busy guy and is very much in love with his new cousin Trevor! He adores him!

BTW if any of the NS moms that read my blog know if this could be related to NS...the constant colds and stuff, please let me know. I don't seem to see anything so maybe it is just Z.

15 Month Well Baby

2009-02-17T21:13:00.002-06:00

Today Zachary had his 15 month well baby check up. He is a on a delayed vaccination schedule due to his chemo last year. Boy, that sounds nice..."last year". Today he got another HiB, DPT, 1st polio and one for a baby pnuemonia. He knew it was coming and my poor boy freaked. He only cried for a few minutes but to see him anticipating the shots was awful.

He is 20lbs (down 1 lb from his 12 month) and is 31". On the NS chart he is 75th for weight and 90th for height but on the normal charts he is 50th for height and less than 5th for weight. He was showing off for Dr. Kate as he usually does. We both feel his soft spot is a little smaller, but not much. The neurosurgeon never called me back so I need to call him again to see how long we watch it or what the next step is.

I am to call Dr. Kate in 6 wks if he is not walking and we will then go for the physical therapy. She told me she thinks Z is growing fine at this point but encouraged me to ask the geneticist about growth hormone therapy and what we will look for to determine if he will need it. I suspect it is a bit of a "wait and see" type of thing.

He will do lots of games with your hands and loves to play peek a boo and say "boo". He tries to put his clothes and shoes on...he knows where it all goes...can say about 10 words and knows that my hair clip goes in your hair. LOL He doesn't stand yet and while I know not to compare, we all know it is hard not to. I was looking at pics of Jonathan at his age and WOW he looked like a little man. He was brushing his teeth and was just so big. I look at my little Zachary and hes still such a baby...well looks like it. Someone said to me, "How old is he, about 8 months?". DOH nope, just a peanut! He is doing things in his own time. He does now pull himself up in his crib and I have to say, it is the sweetest little thing! Of course tonight Jonathan was in his crib w/him and really, they can't fit in there side by side and I'm sure they are WAY over the weight limit but I hate separating them. I talked Jonathan into coming out and know he just loves his baby so much.

I mean really, look at the love here...Zachary cracks me up because I see both his grandpas in him. He's a good mix! And Jonathan, I'd say he looks like Jason, but has my temper.

He's doing good!

2009-02-08T10:35:00.002-06:00

Last week my Uncle Joe passed away. He was my Dad's brother in law. He was a wonderful man and loved so deeply by so many. I could see the pain in his children and grand-children's faces and it broke my heart. So many people love him.

Because my dad's family is so large, it seems that, sadly, we only see each other at funerals. I see first cousins that I never met and 2nd and 3rd cousins that I either never met or haven't seen in ages. I have connected with some of them on Facebook and I love that. I am never amazed by the support that my Father's family gives when someone is in our family is in need. It doesn't matter when the last time they saw each other, this huge clan comes together and sticks together. They are there for each other, no questions asked.

Dad's family are huggers too. I love it. No matter how bad your day is, a hug from someone can do wonders...that is if you like hugs!

Since Zachary's birth and him getting sick, so many members of my extended family have reached out to us. And I am reminded of the love when I see them all. They are thinking of us and praying for Zachary and to feel that love and support is incredible. At all the funerals, weddings and reunions I have attended since Zachary's birth and sickness, Uncle Joe's was the first one that I felt I could say, "He's doing good!" and mean it. So many people asked about my sweet Z and it felt good to tell them how good he was doing and to feel confident that my son is in the clear. It's amazing.

Speaking of Z, he is up from his nap and I need go. I will update on our meeting with Parents As Teachers later this week. And his lungs are clear and we suspect his cough is just from his reflux. I will monitor it and if it gets worse, we go back to the doctor.

Have a great day!

Well lookie there...

2009-02-01T09:22:00.005-06:00

It's my 100th post and I've got something fun to share:
Yep, he pulled himself up and was fascinated with the buttons.I also got some great fun in the snow pictures:

Sydney and Jonathan are getting ready to go down the hill!
Here is the hill:
Angry baby!

Happy Baby:

A little bit of news...

2009-01-28T20:58:00.003-06:00

I had an appointment for Z to see Dr. Kate today. Of course the awful snow storm didn't help but we managed to get there after a long 45 minute commute when we are what, 5 miles from the office? Nice!

Anyway, I told Dr. Kate that he has been congested with a snotty nose since LAST Saturday and I was pretty much at my witts end and wanted answers not another RX. She listened to Z and said yes that he sounded gunky but she didn't suspect allergies as he was a bit too young for those. She suspects that his bronchial airways are irritated and she agreed that a 5th RX in just about 5 months was not the route we should take. So she prescribed him an inhaler. He gets 2 puffs every 6 hours and I am to call Monday and report how he is doing. She thinks that because he had the pnuemonia and then bronchitis and the croup that he may just be super sensitive and irritated. Works for me! So he has had 2 treatments tonight and is sleeping w/the vaporizer going strong. After the 45 min ride home I opted to stay home and take a personal day. I was exhausted. Plus Jonathan so badly wanted us to go sledding. And we did!

While there she told me that Dr. P (Geneticist) sent her a very nice and informative letter about our consultation with her. I told her I was annoyed w/no results from the neurosurgeon and she said, "Oh I have the results!". Basically he said that Z's fontanel (soft spot) was large for his age but otherwise his little noggin and brain looked fine! So where do I go from here? Well I figured that if I see no improvement then I will call again (and again) until I get answers. Let's just hope it closes up within the next few months or by 2 years old! She also agreed the problems Z had last year and his JMML "scare" was the JMML like symptoms that NS kids can have in the first year of life. She said even though that time sucked, it was good because it helped us be more proactive with him. Good point!!!

She then told me she also got results of his spine xray and lung xray and both were good! Double Yay! I forgot to ask about his CBC. We talked about his growth on the NS chart and he was in the 50th and 75th percentiles so he is doing well. He was at 20lbs so that was incredible!

We touched on Physical Therapy and she said she will refer us at anytime. However, she is not concerned and the last PT he saw wasn't concerned either. He is doing so good at pulling up. I'm sure he is the only 14 month old who's crib has not been lowered! LOL

I felt good after this appointment. I mentioned that Dr. P suggested we (Jason, JD and I) at least get an echocardiogram if we were not doing gene testing on us to rule out any heart issues. She agreed with this. We are to meet with the geneticist in about a month, after we get the gene test results back.

Progress is being made, just not at the rate I want it to be but still, things are going and that is good.

Rearview Mirror

2009-01-27T19:46:00.002-06:00

As I was driving into work today I had the radio off in order to help me concentrate on the icky roads. I heard the boys "talking" and I looked in my rearview mirror to watch them interact. Here is what I heard:

Jonathan: No buddy we don't want you to be born again at the hospital.

Zachary: blah blah yelp

Jonathan: That's right buddy you were really sick when you were at the sick hospital but you came home all better.

I then watched Jonathan reach over and touch Zachary and he squealed and they both smiled. Jonathan remembers a lot more than I give him credit for. He remembers the hospital Zachary was in and points it out from the highway as we drive by. He remembers visiting my Dad at the heart hospital there when he was sick and watching a movie with him. He remembers what toys he played with in the hospital when Zachary was sick. He remembers Buster and my Mom and tells me how they are in heaven with God and that God and Grandma are always in his heart. He remembers Jason's Grandparents in Iowa and the toys and the stairs at their house. He keeps asking me to go back and visit. He remembers that Grandma and Grandpa F are in AL and my Dad is in FL. He amazes me. He may drive me absolutely batty some days but when I look in the rearview mirror and see him being so kind to his brother (most days he is kind to him) then I know I must be doing something right. Right?

Call me Homer, Homer Simpson that is!

2009-01-25T19:58:00.003-06:00

I never watch the Simpsons. But I turned the tv on channel 2 as I finished dinner dishes and cleaned up. I took the kids to their room to read them a bedtime story and when I came back into the living room around 7pm the Simpsons were on. I began picking up toys and I heard Marge yell at Bart and say, "why can't I have a son that behaves?". My ears perked up and I laughed. Then Bart and Lisa were fighting over Bart throwing boogers at her or something. They were in the car and Homer told him if he did it again he'd drive the car into a tree. So yes, Bart attempts to do it again until Marge intervenes. Wow, my son is Bart Simpson! And as much as I hate to admit it, I am Homer Simpson! I've never admitted to being the perfect mom but really, Homer Simpson? I have told Jonathan if he didn't stop screaming/yelling/throwing stuff or torturing Zachary in the car that I would drive us into a tree. Yes I am embarrassed but it got his attention. Mind you when he was about 3 months old he was screaming in the car and I ran our van into a poll at the drive thru at the pharmacy. Not intentional but still, I hit things when I get distracted. Do my threats work? OMG NO WAY!

Today the boys and I were playing on the floor in the mess of toys and Zachary had himself on his knees at the toy box. He has been doing that for a few days. Then in slow motion I watched my baby pull himself up to stand at the toy box! I screamed at Jonathan to look and we clapped and yelled! Z got over excited and fell on his bum! Then as I was getting ready to put them to bed he was saying mommy and daddy and I said, "Say Jonny" and he said "Nonny"! yay! What a great day! He is doing so well!

During the bedtime story, Zachary climbed off my lap, climbed to the TV (yes there is a tv in their room), pulled himself up and turned on the Wow Wow Wubbzy DVD. After we finished the story I put them both in bed and both boys are asleep right now in their room! For those who know our sleep issues this is HUGE and it is the third time in one week! Mind you Z still wakes up at 3am to eat something and JD wakes up at tells him to quit screaming like a baby.

Oh well, I must be doing something right b/c I think they love me.

I hear Hermie the Hermit Crab making a fuss so I need to go feed him!

Waiting - Take 2

2009-01-22T19:24:00.004-06:00

It seems that everyday I fight for getting my son the care he needs. It may be as simple as an evaluation of some sort but everyday it is phone calls, paperwork and research. I know things could be a lot worse for him but I don't want to wait and see what happens with him and see if he does "catch on". I am trying to be proactive in his health care and on days like today, I feel like I'm getting beat down.

The geneticist referred Z to Missouri's Early Intervention program (First Steps) after a 10 min conversation they decided that Z did not qualify. The wonderful state of Missouri does not recognize NS as a condition that requires this service. This service would provide us with in home physical therapy and occupational therapy. He would get assessments and it would follow him to the school district. I am just disappointed that because my son is only 4 months delayed and not 6, then the state doesn't seem to care about him. Again, I'd like to thank former Governor Matt Blunt for all the wonderful work he did while in office...notice the sarcasm?

My next step for PT is to call the insurance company and see what is covered and then return back to the place he went before. It will all work out!

I was told about a school that has therapists there on staff, Good Shepard School but at this time I can't afford daycare for Z there and then preschool and childcare for Jonathan. However, maybe when Jonathan is in school and Z is about 3 (the rates decrease a LOT at 24 months of age) then we can send him there. I know there are less expensive resources out there for us and I will find them. I refuse to let my son slip through any cracks or not be the best he can be because of a few dollar signs.

Tuesday we had his gene test done and he did SO well and he didn't even cry! I called the neurosurgeon Wednesday to find out his results...no return call yet so I guess I have to call again tomorrow. We have his hearing test scheduled for March and the nurse is scheduling his other tests and will call me back with those appointments.

On a happier note, we noticed Z kneeling again at his sing along stage toy. He was so proud of himself. He has also become a little Hoover and eats everything he sees! He is always hungry! I don't mind...well I do when it is at 3am and he wants to eat real food. Ugh!

Let the testing begin

2009-01-18T11:38:00.003-06:00

I am still waiting on the CT scan results from the neurosurgeon's office. It's been a week and I think I can call them next week to see if they heard anything. I know no news is good news but I hate the waiting. Mind you, this test is not related to NS, as far as I know. It is simply for his soft spot still being open.

We go on Tuesday (1/20) for his gene test. I could list what gene is being tests but um why add any more confusion to this situation. I think that this gene is also related to JMML and that is why the 2 in some cases, are linked. This test is sent off to Baylor and will take 4 weeks to get the results. Apparently only 50% of people with NS have this gene or gene mutation. Sorry but I read so much information that I can't recall what end is up anymore.

Still waiting for Early Intervention to call, the Audiology department to call and then the nurse to call with the dates of the echo, ekg and abdominal/kidney ultrasounds. We did get an eye appointment scheduled for March.

I found a blog about a little girl with NS and just read her Mom's post about her eye appointment and I could relate on SO many levels. You wait 2 hours and are even asked to arrive 10-15 min early so you can register, yet the doc sees you for all of 10 seconds! And that costs you how much? Don't get me started on that!

I have found on several reliable sites that when an infant is facing a diagnosis of JMML they should rule out NS because in that first year, NS can cause JMML-like symptoms and as I said before, it doesn't require aggressive treatment and tends to go away by one year of age. I suppose that the chemo Z got was just enough treatment to help put his little body back on track. I am so thankful his doctors went that route and were not over eager to do a BMT. This information helps me to relax about my fears of JMML "returning".

Jonathan and I watched Z pull up on lots of toys and kneel for a while at some of his toys. He also said "nana" and pointed at the bananas. He is a pointer so I now try to make him say the name of what he wants. He will tell me no if I'm wrong so I need to teach him his words so he can use them.

We have a diagnosis

2009-01-13T20:32:00.000-06:00

This morning was a bit rough. Zachary and I were at the hospital at 8am for his CT scan. He was such a trooper! He did so good and made lots of friends. He impressed everyone with how still he was. We then headed over to the Geneticist appointment.

A stomach bug had hit our house on Friday starting with Zachary, then Jonathan, me and now Jason. None of us are 100% but to see Zachary smiling again and Jonathan not sitting still is a good sign. I was afraid Z would start puking at his appointment. We first met with the Genetics Counselor and reviewed some family history and why I suspected Noonan Syndrome. As soon as the doctor walked in she began showing me pictures of kids with NS and confirmed the characteristics that I felt Z had...droopy eyelids, low set ears, blue eyes and then she added in several more which I hadn't heard of. She asked what prompted me to think he had NS and I told her about the link to JMML and how a friend pointed out his facial features to me ( her sister has NS). She confirmed what I suspected...Zachary has NS.

Obviously he did not meet all the characteristics but he had so many of them. She took lots of measurements and our little Z sat very patiently and smiled at her. He reached for a picture of her daughter that she wore on her badge and tried to kiss it. He is such a lovey.

My friend showed me this:

What is the association between JMML and Noonan syndrome?In rare cases, infants with Noonan Syndrome develop a JMML-like disorder. Noonan syndrome is characterized by distinct facial features, growth retardation, and heart anomalies. Notably, the JMML-like disorder in patients with Noonan syndrome often resolves without aggressive treatment by the time the child turns one year of age.

Could this seriously be the cause of everything my guy went through last year? Wow!

So where do we go from here? Well as I sat in the office taking it all in, calming Z and trying to think of questions and just wrap my head around all this she rattled off some stuff about genetics testing and ultrasounds. We were sent down for a blood count, coagulation test, spine xray and lung xray. She agreed with me that his spine is for sure bowing out and she wants it looked at. We will then get an echocardiogram, ekg, abdominal ultrasound and kidney ultrasound. She was concerned at how his belly was "puffy". He will also see an eye doctor, have a hearing test and be referred to Early Intervention for physical and occupational therapy. Once she gets all his test results, we will meet with her again. She was wonderful. See why my head was spinning? Thank goodness the nurse wrote it all down for me.

We went to have his xray's done and would you believe this kid was still for the techs? I am so amazed! They were very impressed too! And when he had his blood drawn he sat on my lap and didn't flinch! He cried b/c he didn't like his arm being held down and I'm sure it did sting a bit.

The Dr. recharted him on an NS chart and he was in the 75% for weight and head circumfrence and I think 80% for weight. He will now be charted on an NS chart and at least he makes it on the chart there! On a "normal" chart he is like 5% for weight and head. Poor buddy. So this explains why my Peanut is just that...a Peanut!

Its a lot for me to take in but I feel good about this. I know he is going to get excellent care and NS is so much better than JMML!!! He doesn't seem to have the heart condition that goes with NS so I am optimistic about this. I'm still a bit sad that my baby has a "syndrome" of any type. No one wants their child to have to live with any chronic condition but I'm sure as I get use to it, it will just become part of our life and we will do what we have to do for Z.

Welcome 2009

2009-01-06T19:48:00.000-06:00

Happy New Year!

I am hoping 2009 is a much happier year than 2007 and 2008 were. Obviously each of those years had some good times but they were both really hard years.

I am optimistic but if I could get my kids healthy and let them STAY healthy I'd feel much more optimistic.

Zachary has been on 3 rounds of antibiotics since October 1st. He had the croup, ear infections, bronchitis and a virus. On the 26th I took him to the doc suspecting yet another ear infection...nope all was clear so that was good. Yet 2 days later his cough comes back a bit stronger. New Years Day I notice green stuff oozing from his eyes...not good. I take him in on the 2nd and we see a new doc in the office, Dr. Rachel. She is very nice and i told her how he has been sick since Oct with the exception of a week or 2. She told me she wanted to try and knock this out and gave him a stronger antibiotic because this time he had bronchitis (3rd time in his short little life), double ear infection (lost count of how many) and conjunctvitis of the eye. It is similar to pink eye, yet it is not pink eye. My friend calls it eyebola! I'm going to steal that from her!

So while Z's eyes got better and I can tell the bronchitis moved out of his chest, Jonathan starts oozing green goo from his eyes! GREAT! Eyebola has invaded the Foster's! So back we go to see Dr. Kate. She says, "Oh that is the worst case I have ever seen. Poor baby. But don't touch me!". ha ha and I heard her tell the nurse to spray down the room with Lysol. I expect I will come down with eyebola next week and have yet another visit w/Dr. Kate. I told her that and requested my own parking space and spot in the waiting room. They are expanding the office and I am sure my frequent visits over the past year have helped pay for it so she said she would have "Foster Family Couch" for us.

After our visit with Dr. Kate and run to the Pharmacy we headed down to the children's hospital for Z's appt. with the neurosurgeon. It took about 2 hours for seriously, 10 min w/the doctor. GGGRRRR! And I bet it cost me half my deductible too! Hmmm, what is the life time out of pocket maximum??? LOL However, he said it should have closed by 12 months but can take 24 months but his is a bit large for his age and it is getting hard but they want to do a CT scan. Since he never had one done before this one is more or less just to have something to base any changes on. If there is a problem, they will call me to come in and if not, we will just watch it and see what happens in the next few months. They are going to call me to schedule the CT scan in the next few days.

Next week, we meet with the geneticist. I will update after that.

We do have something to celebrate...Zachary can now pull himself up on to the couch. I don't trust him to stand too long alone but he can hold on to that couch and beam with pride!

Good Days

2008-12-29T21:41:00.000-06:00

After my breakdown on Christmas Eve, Jason suggested we go and see my Mom's grave. He had his mom pick up some flowers for us and after all the presents were opened and the boys settled down, we headed out to the cemetery. It was muddy and Jonathan fell asleep on the way. I took Zachary up to meet her and we laid some flowers on her grave. Jason and Jonathan appeared shortly after. It was nice to let Zachary meet his grandma. It still seems so very unreal but it was a good day! The house was full of our entire family...2 nieces and 2 nephews were all that were missing (and their spouses/kids) so we had well over 50 people in the house. Wow! I am sure Mom loved seeing that. It was so crazy.

Yesterday Jonathan and I went to see my Dad. We went to the mall with him to get a new cell phone and to look around for a laptop. He of course went to Cabela's and bought him a fishing pole. It made me think of when he was in the hospital right before their anniversary party and I took Mom to see him. She said something about an item she bought (maybe a magazine) and he told her she had too many. I was only half listening and then I heard her say something about him and his fishing poles. And here he was, buying another one! We then went to Steak N Shake and it all felt so right. Usually it was Mom I went to the mall with and then we immediately figured out where we would eat at. It was our favorite thing to do. It felt so right doing those things with my Dad. I got to create new memories with my Dad and so did Jonathan.

Dad drank a strawberry shake and told us he hadn't had one in forever! He drank the entire thing. I think he was happy (and full). We headed back to his house and Jonathan and him played with his fishing pole. Again, it was a good day.

Merry Christmas

2008-12-25T00:06:00.000-06:00

I just finished placing all the presents under the tree and realized I left my camera at my sister in laws. Bummer. But the kids (and Jason) are asleep and I'm watching the Young and the Restless. A woman on there is celebratilng her first Christmas since her Mother "died", you know she isn't really dead, but I feel that woman's pain. The pain is so fresh. Still. I thought once the firsts were over, it got easier?

Tuesday as Jonathan and I were on our way to daycare and an ambulance went flying past us and he asked me where they were going. I told him he was going to help someone who was hurt. I thought to myself, "If it isn't too late. Like it was for my mom. I hope it isn't too late for this person." That started me on missing my mom terribly, again.

Last year I obviously had my mind consumed with a new baby, a new sick baby. I remember how sick and sad little Z was. He barely ate and was so tiny and weak. I remember Christmas Day I called the pediatrician's exchange but was basically told just to wait until his appt. the next day to see what she thought. That is when our world turned upside down. I didn't have time to think about missing my mom or time to allow myself to grieve properly. I think that is why this year it finally hit me...no more Christmases with my Mom. It's like losing her all over again.

I pretty much lost it today and had my breakdown. Jonathan and Jason were very good to me. I realized what I have this year...a great husband, 2 healthy boys, a job, a house and a wonderful family and some pretty terrific friends. No I don't have my mom here but I know she is watching over me, protecting us.

Merry Christmas everyone. May your heart be light and may you find time to enjoy your holiday and forget all your cares.

He's Four!

2008-12-20T20:14:00.000-06:00

I am a few days late but I am still in shock that my baby is 4 years old. Four. He is no longer a toddler, he is a preschooler. In all honesty, he is 4 going on 20. He can be such a sweet little caring boy and then he can be, well a 4 year old. I love that kid and every year on his birthday I will sit back and reflect the details of his birth. Such an amazing day and so much fun.

I remember on Thursday, Dec. 16th I had an 8am appointment for an NST and fluid check. My fluid had been low. I was 39wks. I had already had one week off work and was ready to finish this appointment and head to the mall to do some walking and try and get the baby to want to come out. My induction was scheduled for Christmas Eve. I had one week to get this baby out. All the nurses at my hospital were on strike. So many people encouraged me to go to another hospital, but I refused. I remember that JD did so well during the NST and the nurses and I chatted about the holidays. I was sent off for the ultra sound to check the fluid. The technician told me to stay put and that she was going to get the doctor because she felt I may need to be induced. What?! Doctor agreed and I was told to call my husband. I called Jason and I remember asking him, while on the verge of tears, if he was ready to be a Daddy. His response was, "well I guess so!". I was whisked off to the hospital and while in the wheel chair I was asking the nurse, please let me go home and get my bag and shave my legs! I live 10 miles away! Please!". She laughed and told me nope and that no one was concerned about my hairy legs. No one but me!!!

By 10 am Jason was there and I was hooked up (after 3 or 4 attempts) to an IV of pitocin and we were ready to get this show on the road! Of course little Jonathan wasn't ready to come out until 10 am the next day. Should have known he'd be a stubborn one! I remember my sister Debbie was there all night with me. So many friends came to see me. It was wonderful. I also remember that Mom, Dad and Linda were the first ones to come up after he was born. They got to watch him get a bath.

Happy Birthday sweet boy! I love you and I am so very proud of you!

Yes Virgina, there IS a Santa Claus!

2008-12-16T22:50:00.000-06:00

And we met him! I am convinced that the man on the train ride we went on was Santa. No one can tell me differently. While Jonathan saw Santa arrive on the train, he slept the rest of the ride. Darn it! It's okay, he really didn't like Santa anyway and never has. Zachary, who has never met a stranger, loves the jolly old man. He adored him. I remember Jonathan always had this sour puss look on his face and would only smile if he felt you were worthy. Little stinker. While Zachary will make eye contact with everyone he meets and stare at them and smile until they can't refuse and cave in and smile back. It is his mission to make people smile. I love how different they are!

Now you tell me, isn't this the REAL Santa? Part of me wanted to sit on his lap tell him my Christmas wishes and dreams.

Come on already!

2008-12-11T21:09:00.001-06:00

Can someone tell me what I am doing wrong with my pictures and why they are not showing up right????

Z had an appointment with a Neurosurgeon on Tuesday. I drive to the medical park that is on the reminder appt card only to find out I needed to be at the Children's Hospital downtown. No, if I drove down there they wouldn't let me in to see the doctor because I would be late. Really? Glad your people screwed up and I have to be punished for it! Oh they can get us in in January? Wow that is customer service...thanks! No, I'm not being a smartass! Really I'm not!

Z has had a cough for 3 weeks now. I tried to convince myself it was just a cold. Then JD woke up last Sat. at 3am screaming for me to call Dr. Kate as his ear hurt (he loves her). I took both boys in and Z has bronchitis and JD has a double ear infection. Z is on new meds now and we are hoping it kicks his bronchitis.

Not only was a mean mom that had her baby get shots on his first birthday, I get to take him back the week of Christmas for more shots. I'm such a cool mom and I know all the kids are jealous and hope their mom will do the same thing for them!

Good news:
Jason's cousin Jarrin's brain tumor had not spread to his spine. He started radiation and had a rough time. Hopefully he can get some meds to help with that.

Bad news:
My uncle was diagnosed with bladder cancer. It doesn't appear to be good. My heart breaks for his family.

Happy Birthday Dad!

2008-12-08T18:36:00.000-06:00

Just wishing my wonderful Father a very happy 76th birthday!

We love you Dad!

Another daughter without a Mom

2008-12-03T19:55:00.000-06:00

Yesterday I got a call from my dear friend M that her Mom passed away. My heart broke into a million pieces. Flashbacks of my own Mother's death came flooding back into my mind and heart. Even though I have been in her shoes I had no idea what to say for her. I was speechless. I knew that nothing I did or said could help her at that moment. I told her that I know it hurts so much and it will for a while and to allow herself to feel her pain and sadness.

I cried on the phone with her and a long time after we hung up.

Mrs. H was a special woman. When my own Mother got sick she would email me or have M ask me about my mom and she would light candles for her. When Mom died, she sent me a card and told me if I needed anything then to call her. When Z got sick, she again lit candles for him, said prayers for him and asked about him a lot. The last time I saw her was in June when I had a purse party. Mrs. H was so chipper all the time and so kind and caring. She was the type of person that you wanted to hug you because you knew it was a real hug and so full of love. I remember she held Z that night and just sat there holding him. I know she loved the babies and kids. I wish I had taken my kids to see her more. She called me a few weeks after that to see how we were doing and if I needed anything.

I get so busy in my own life that I forget to reach out to others that may need me. I know we all do it but how do we stop it?

When my mom died and then Z got sick, I learned what it is like to be on the receiving end of needing prayers. I was so use to being the one that said prayers for people that I had no idea what to say to people in need or people suffering. Unfortunately most of the time I said/did nothing for fear of doing the wrong thing. I now know that sometimes hearing "I'm thinking of you" is all a person needs. An "I'm praying for you" means more than you could imagine when it is said to you.

I hope that I can be as good of a friend to M during this difficult time that she has been to me. M if you ever read this, I love you sweetie and will always be here for you.

Mrs. H, I can picture you and my Mom up in heaven talking about your kids and grandkids. I can see you both shaking your heads and laughing at things your kids have done. Give my mom a hug for me. I'm sorry you had to go so soon. You left your mark in this world and the skies are a bit brighter tonight because you are shining down on us.

Hug your Mother and be kind to others, life is too short.

Remembering a friend

2008-11-26T04:57:00.000-06:00

A year ago today my online community lost a wonderful woman, friend, mother and wife. I remember reading about Christy's birth of her second child, Cavan and being so happy about the birth of my own son, and when I read the email that Christy had died I was in shock. I swore it was some cruel joke. How could a young wife and mother of 2 be gone? It wasn't possible. I knew what I was feeling was absolutely nothing compared to what her husband was going through. My heart broke into a million pieces for him and his children. I am sure his world as he had known it was over. Yet, he had to go on for his children and Christy would want him to.

Christy was a very kind woman and reached out to many. I do not ever recall her saying an unkind thing about anyone. I do remember that if you were having a hard day or going through something difficult, she reached out to you. She was that kind of person. I know that her big heart helped so many of my friends and her kindness was contagious.

Christy, you are missed by so many. Thank you for making the world a little kinder.

Happy Birthday to my little Hero!

2008-11-21T19:30:00.000-06:00

It's 7:31 pm and this time last year I was finally asking for my epidural and was about 5 cm dialated. I think my epidural was in by 7:45 and by 845 I called the nurse ready to push. It happened so very fast. She told me to wait for Dr. B, he wanted to be there. So I waited and at 10:06pm, my beautiful precious baby boy Zachary James arrived. He had a few minor problems at the time but was gorgeous and so perfect. I remember thinking "I have to call Mom" and then realizing she wasn't with us. However, I knew she was there and she was guarding my little boy as he needed some oxygen to get things going. I remember calling my dady at about 10:30 that night. It felt good calling him, reaching out to him and sharing my joy.

My perfect second son. My last baby.

I remember a few days before delivery I was freaking out because I could not imagine having enough love for 2 kids. Would I love #2 as much as #1? How is that possible? Someone told me that your heart grows and makes room for more love. That is true because I love both my boys more than life itself.

Unfortunately little Z hasn't had is birthday cake yet...he had his 1 year appt and got his first shots. yay! And has been asleep for nearly 3 hours. So we will celebrate tomorrow. My Zman is 18lbs and 3 oz and 29" long. Dr. Kate is very pleased with this. She has some concern for his soft spot so we go see a neurosurgeon on Dec. 9th. I know it can take 18 months for it to close up but what is the harm in going now, right?

Zachary you are my hero. You taught me so much. Thank you for never giving up and having the strength to go on. Thank you God for allowing him to go on. I love you little man.

Thanksgiving Feast

2008-11-20T19:55:00.000-06:00

Today I volunteered at Jonathan's preschool to work at the Thanksgiving feast. Did you know that 16 3 years olds are exhausting? Yet, some of them are so loving and sweet that they make it all worth it. One little girl came up and hugged me and sat on my lap. How sweet.
We played for a bit, rehearsed the "show" they were going to put on for us and then I left to help set up for the feast. Several moms were there and we chatted a bit. One mom said to me, "Oh you are Jonathan's mom? He was the little boy I had to try and get out of the maze at the pumpkin patch. He didn't want to get out!". Hm, how do I take that? Was that a, "your kid is a brat" statement or just a comment. I don't know. I felt kind of bad. Yet did I tell her that while we were playing her little boy was snatching toys from a little girl? Nah, I bit my tongue. I know my kid isn't perfect and I don't want him to be. I was just over sensitive because I want him to be good for everyone! Oh well, he's 3. He did do very well today and I was so very proud of him. He shared toys, played with the kids and then sat quietly and looked at a book. What? He never does that at home!
Here are a few pics from his show:

Well Zachary will be one tomorrow. This time last year I was spend my last night with just one kid. I had no idea what the year ahead had in store for me. Goes to show, you can't plan your life, you can only live it!

I meant to post this earlier but if you could say a few prayers for Jason's cousin Jarrin. He was diagnosed with a brain tumor almost 2 weeks ago. You can read Jarrin's story here. I know his family would appreciate any extra prayers that could be sent his way. We all know the power of prayer.

Does the whining ever stop?

2008-11-11T21:30:00.000-06:00

How can my happy little baby be such a Wendell Whiner? I mean seriously, he is so happy and then he sees me and he gets all whiney and clingy. It's like he will be playing and then think, "where is mom" and begin to whine.

Seperation Anxiety.

Man this sucks. Luckily for him he is so cute and has a smile that melts my heart.

What we have waited for!

2008-11-09T20:39:00.000-06:00

This is a little late and I am so sorry but I had to attend my annual shopping trip with my sisters! Before I left for my trip I took Z to see Dr. Rob. He examed him, played a few games with him and they took his blood. He told me that he felt that the worst is behind us with Z and that we would have some good news with these results.

Jason got the call that evening that Z's bloodwork was the best it had ever been. Yay!!!! He called me at the hotel to let me know. His liver and spleen were normal in size this time too...they had always been a little bit enlarged. I celebrated this weekend by drinking some wine and buying my little man some clothes. Bigger clothes.

I still wonder what was wrong with him but I don't know if we will ever know. Dr. Rob called him a "hero" and I tend to agree. I see my little man getting stronger by the day and in my heart I believe he is going to be okay.

Look at him go!

2008-11-03T20:23:00.001-06:00

Everyday I look at Zachary and I analyze his every move and see if I can see him making progress towards his next milestone and you know what, everyday he shows improvement! Want to see?He is sitting up for longer periods of time and will focus on doing stuff while sitting. So I broke out Jonathan's old walker/car toy just to see how he'd do. Well as a walking toy, it was a bust but as a ride on toy, or rather sit on toy, he loved it! I got him to sit on it for a minute or two and he thought he was such a big boy! That little guy amazes me more everyday!

Here are our Halloween pictures, take a week early!

Must be doing something right!

2008-10-16T22:12:00.001-05:00

There are days where I wonder why I was chosen to be a Mother because I don't feel very motherly and would love to disappear for a bit. Yes I love my boys more than life itself and I know how blessed I am but some days...I just need a break.

And then when I think I am failing as a Mother my precious 3 year old (soon to be 4!) shows me this wonderful side of him and teaches me a few things. He is a doll that Jonathan. He is a very kind boy and loves everyone. He loves to talk to strangers and is very polite. At home, he is a bit more, um what is the word, rowdy?! LOL

Since mom passed away I have made sure I talk to him about her, show him the photobook I made and tell him how much I miss her. He takes it all in and he knows who she is and that she is in heaven with Buster and God. He knows that Grandma Keeven and God are both in his heart and with him all the time. Sometimes what he knows and shares with me makes me slow down and take time to smell the roses. A few days ago I got up to take my shower, both boys were awake too so I put them in front of the tv and prayed I could squeeze in a quick shower before Blue's Clue's was over. I kept hearing noise and tried to hurry up. As I came out I asked Jonathan if he and Zachary were ok and his reply was "yes" and then he said, "Mom your Mom was here!". Wow, that's crazy. I said, "what" and he said "Your mom was here." and after asking what about 3 more times and where she was he told me "Yes, your mom was here. You know Grandma Keeven that is in heaven? She was right there by the door!".

My first thought was that someone had tried to break in but then I knew that he had seen her. Some form of her. I think Mom popped in for to check on the boys for me. Call me crazy but I think the boys see her a lot. Jonathan talks about her a lot and I love it. Sometimes I cry and sometimes I just sit and listen and smile. I love talking about my Mom and I especially love talking to Jonathan about her. Sure there are tears but its all good. He also informed me that he wanted to have his birthday party at Grandpa Keeven's house because that is where we had mine. Hey, as long as Grandpa doesn't care it's a LOT cheaper for me!

Z-man is doing great! In the past week he has changed so much. I swear he is the happies baby on Earth, even though Jonathan says we all get the grumpies and Zachary gets them a lot! He charms every person he meets. He is a special little person and I am so glad I was chosen to be his Mom. He adores JD. His appetite has increased and maybe even doubled! He loves the bottle and will now drink 7 - 10oz sometimes! This will be after he eats dinner. He is on all table foods and can chow with the big boys. He eats anything and chews really well! He is cutting 2 teeth on the top. He had a fever tonight, very low, and was a bit fussy but Daddy got him to sleep. I can't believe that in 5 weeks that little Boo will be 1 year old!

We went to see the Urologist for his follow up appt and he said he heeled up very nicely and has good skin! Despite the wee bit of diaper rash he had going on. He drinks from the sippy cup and bottle and anything else he can so this has resulted in lots of wet diapers and lots of leaks!

My Dad lost one of his dear friends this week. My prayers go out to Ray's wife and his kids. Dad cared a lot about him and I'm sure this was really hard for him.

Fall already?

2008-10-13T20:48:00.000-05:00

I can't believe that 2008 is coming to an end soon. My little Z will be 1 year old in 6 weeks and Jonathan will be 4 in about 10 weeks. Ugh! It is so hard to believe and so tough to decide what to do for birthdays when there is always a holiday in the way!!!

The boys are getting over ear infections and I am getting over bronchitis. It was such fun times in the Foster house...NOT!

Jonathan is loving preschool and can't wait to go. I know he would love to go everyday if he could. He adores his teacher. I love hearing him talk about his day and the kids in his class. He seems so grown up. He asked if he could be Thomas (the train) for Halloween again and if Z could be Percy. Well we can't find a baby Percy costume so we are hoping Z can be a conductor. We'll see what I can come up with. J is very eager to head on down to AL and stay with Grandma and Grandpa. Oh and he got his hair cut at a big boy place with Daddy! He is so proud and he didn't cry at all!!! FINALLY!

Z is doing great as well. He gave up his binky this past weekend and it made me sad. Laugh all you want but to think of my last baby giving up some of his baby stuff makes me sad. However, if he would give up his 1 and 4am feedings, I would NOT be sad at all. I have noticed him trying to climb over stuff lately and it is so cute. He loves to clap and play patty cake and so big. He is obsessed with giving me wet kisses...it is so sweet.

My Dad left for FL on 10/1 but had to return today for his friends funeral. I'm a bit worried about him because I know how hard the first funeral after Mom's was for me and I can only imagine how hard it will be for him. Poor Dad.

I will try to share some new pics in a few days.

Doing it in his time...

2008-09-29T22:01:00.001-05:00

that is what the physical therapist told me about Z. "He is doing things in his time!"

She told me that after all he has been through we need to cut him some slack. He is using all his muscles as he should and she was impressed with all he was doing already. She commented on how alert he was and her observation is that he is too concerned with the world around him and he doesn't have time to sit still.

No further appointments unless we are still concerned. We got some exercises to do to help him learn to catch himself, kneel, sit, stand and crawl.

One year ago today...

2008-09-14T06:17:00.000-05:00

I lost my Mother. I know she is still with me because I strongly believe that she is the one that has protected Z. She always told us that God wouldn't give you more than you could handle and I hated that statement. Along with, "everything happens for a reason". Those 2 statements never seemed to bring comfort, but I think people just don't know what else to say, myself included. But once again, my Mother was right. I told her before that she was right a lot of the time and I didn't like that. Ha!

I had a dream Thursday night that I was at my Grandma's house (Mom's Mom) with Z, Grandma and Mom. There were other people there but I don't know who. We were cooking. Mom and Grandma sat at the table telling us what to do. It was comforting that in my dream she got to meet Zachary. I think the dream also showed me that Mom is OK. She is in heaven with Grandma and Aunt Isabel. It kills me that she never met Z. I always use to pray that my parents would live to see me married and meet my kids. I think because she wasn't here on Earth to meet Z, she met him in other ways. When he was really sick he would lay there looking around the hospital room and would focus in and stare up at the ceiling. I swear it was those times that he saw Mom and she comforted him in the way that only a Grandma can.

I miss her terribly. The other day I was upset and Jonathan asked me what was wrong. I told him I was sad and his usual response is, "Do you miss your mom?" and when I said yes he reached out to pat my arm and said in a very upbeat voice, "It's okay mom, when she gets undied she will come down!". It was so sweet. I know that kids need their parents, but I never realized how much a parent needs their child.

Mom - I will love you always and will miss you forever.

Surgery is done!

2008-09-11T20:42:00.001-05:00

Well yesterday was a bit of a long day. We got him into surgery a bit after 1pm. There was some concern about his murmur so they were trying to reach his doctor. He got out a little after 5pm. He had a bit of congestion and was breathing hard when he wasn't sleeping and he wouldn't eat and the little he did he vomitted. We left around 630 and I got Z to eat 4 oz in the car. He crashed when we got home but woke up twice to eat.

Today he was happy, cranky, happy, cranky...LOL. He would laugh and play a bit and then would get clingy and tired. I don't think he knows if he is in pain or not b/c he took off his diaper when I wasn't looking and has been doing his army crawl and pulling at his diaper! He looks very bruised and man it looks uncomfy! But he is my little trooper and is going strong.

I called the Genetics Division at Cardinal Glennon and apparently the doctor that Dr. Rob referred us to has left. But anyway we are to fill out some paperwork, have Dr. Rob/Dr. Kate fax over his medical files and then they will call us and we can hopefully get in in November/December. I have the appt scheduled at Children's in Feb so if we can get in before then then I will just cancel that one.

So one more hurdle has been over come and now we move forward.

Good news...

2008-09-08T20:52:00.000-05:00

We saw Dr. Rob today for a CBC. He called me this evening to tell me that Z's bloodwork was normal!!! He said a few numbers were a bit elevated but it appears to be normal for Z and it was nothing concerning. His monocytes were the best they have EVER been!

He was hamming it up for everyone and showing all his new tricks and getting lots of attention from the nurses and staff. He's gonna be a handful!

I must say this is the most positive I have felt about his situation in a LONG time. I think he saved it all up until he knew I was having a bad day and then he thought he'd give me some good news. :-) Little stinker. I think I will always fear that the worst is not behind us, but for now, I'm celebrating. Z is celebrating by sleeping. ha ha ha If only Jonathan would sleep...

His surgery is Wednesday and I will update after that.

Have a great evening!

Our Last Supper

2008-09-07T22:46:00.000-05:00

No, not the one from the bible, the one with my Mom.

Last year on this date I was enjoying the last supper with my mom. It was me and Jason, my sister, brother in law and niece and my mom and dad. Mom was so tired. I had to help her take her insulin because she couldn't see. She looked thinner and was even nodding off at the table. She had no appetite and barely ate. I remember she ordered a pricey shrimp meal.

We sat in the restaurant, talking and laughing like everything was fine and well, it was. Could we have done something different? Maybe but it wouldn't have made a difference. While I miss Mom so much that it hurts, I know she was tired and ready to home and be with her loved ones that went on before her. She had a long journey and needed to rest. I know she is up there with her parents and her sister and so many others. They are catching up and enjoying the peace up in Heaven.

Today we had the Keeven family reunion and this was a day that mom looked forward to. She enjoyed it so much. Last year we all went and moms death was so fresh and it was so hard to be there, yet so comforting. Mom had always planned it all for us and took care of us. Well we forgot table cloths last year. This year I made sure I brought one. Mom would have had 2 or 3 vinyl ones, I only had 1 disposable one. She made sure we all had plates, utensils and napkins. It seemed to always either rain or be very hot for our reunion. This year it rained that morning and then was a gorgeous day that we all enjoyed. I think Mom made sure it was a nice day.

It was one year ago today that I last saw my mom alive. I hugged and kissed her goodbye and told her I loved her. I guess that isn't a bad way to end things. I wonder if I had known it would be the last time I'd see her if I would have said anything else?

Thank you. I would have said "thank you Mom for being the wonderful Mom that you were.".

The Big Day

2008-09-03T06:45:00.000-05:00

Jonathan and I survived the big first day of preschool.

Look at how handsome and proud he is with is Diego back pack. On his first day he brought home monkey mask. They are learning about animals and Adam and Eve. They will do apple painting in a few weeks.

Ms. Alee said he did great and was a good helper. He was a bit hesitant but I noticed if I just leave and don't look back, he manages just fine.

As for AWANA last night, he was very tired and cranky and I heard he clung to a few legs. Tom said he was attached to Vicki's leg. I know he remembers her (Debbie's friend) and I'm sure he felt safe. He didn't play w/the kids in the big group but I think he did fine in the classroom. After AWANA we went to see Grandpa. Jonathan was a bit wond up and I tried to let Grandpa let him stay. Ha! One day I think he will but not last night!

Zachary passed his pre-surgery physical so as long as no colds come up and his blood count is good on Monday, we will move forward with his surgery.

Have a great day!

Date is set

2008-08-31T21:19:00.001-05:00

Friday Zachary had some stomach bug and I was so glad I had the day off because he was just puking non stop for about 5 hours. He then got some sort of cold. He is doing ok but just a bit snotty and whiney at times.

Anyway, on Friday I made a few phone calls and got him in to see a geneticist in February. They will call if there is a cancellation.

The urologists office called and set up his surgery for Wednesday, September 10th. I have to take him to his primary doc next week to make sure he is ok...no fever...and then the hospital will call me on 9/9 with a time and instructions. Jonathan will spend the day as he always does, with Chelsea and Arianna and then Jason and I will take Zachary to the hospital. The surgery can take 2 hrs and should be outpatient.

On Monday, 9/8, he will go see Dr. Rob for his monthly bloodwork. Fingers crossed that it all goes well and his blood work is normal.

So it looks like the next two weeks will be busy! I will update as I can.

9 Month Appointment/Preschool

2008-08-28T20:03:00.001-05:00

Today we had Jonathan's preschool open house. Chelsea and I took him up there and at first he didn't want me to leave his sight but then he began playing more. I think he was a bit intimidated by some of the kids b/c he didn't know them. It's funny because he was a good 2 - 3 inches taller than nearly all of them! The teachers were wonderful and it looked like so much fun. So many different activities. I wish I could go. We told him that next week he will go and stay for a bit but the mommies couldn't stay. I think he'll be okay.

We then had Zachary's 9 month appt. Everyone commented on how big he had gotten and how HUGE Jonathan was. We weighed him in at 51lbs...fully clothed. I think he is 42 or 43 inches tall. Dr. Kate was even impressed. He got a bit wild and she said, "Glad he's going home with you!". Ha! She laughed and said she has days when she takes her 2 kids out alone and feels like crying. Glad to know I'm not alone.

Well Zachary weighed in at 16lbs and 14oz with a diaper on. He is in the 5th-10th % and has fallen down a bit on his chart. At 6 months he was 15lbs and 1 oz. So he barely gained 2 lbs in 3 months. Not good. He is 28.5" long and is in the 50th % for that. His little peanut head is in the 5th %.

I addressed every concern I had and the first was his soft spot...still huge and she said that was reported in the hospital report and she just wants to watch it.

His lower part of his spine seems like it sticks out. She said she doesn't think it is curved and that it is b/c he is so skinny.

Not sitting up...while he is making progress he still is not doing it. She will gladly send him to physical therapy when I'm ready. I may wait a few weeks because he seems to be doing better and the parents as teachers lady gave us some good ideas for helping him along.

My ultimate concern is that he has NF1 or Noonan Syndrome (NS). Both seem to effect (in some way) kids with JMML and that is how I found out about them. He has the one symptom of NF1...the cafe au lait spots. As for NS, I say he has several and Dr. Kate agreed. The main symptom there is a heart defect...pulmonary stenosis. He does have a murmur and 2 echocardiograms confirmed it was just a murmur. But you see, NS has a huge spectrum of symptoms. Some people do not know they have it and others, well they have it bad unfortunately. Another symptom is undescended testicles...check. Low set ears...check. Droopy eye lids/lazy eye...His eyelids may be a bit droopy or is it hereditary? That's the thing, lots of these symptoms can be hereditary traits as well. NS can also cause (if cause is the right word) developmental and mental delays and mental retardation...obviously I would take any or all of these over JMML.

Dr. Kate will always say, "what is your Mommy gut telling you?"...this time, it's telling me that I'm afraid for my baby boy. I'm afraid of 2 things...the worst isn't over yet and that he truly has JMML and something is "hiding" it some how and the not so bad (I hope) is that he has NF1, NS or some combo of the 2. Unfortunately, my Mommy gut is not telling me that it is nothing.

She advised me to call a geneticist and then we may call in a neurologist as well. For some reason, these 2 steps are really hard for me. Maybe deep down I do know that something is wrong or maybe I'm just really sad because I wish (so badly) that my mom was here. With the first anniversary of death approaching, I'm finding everything a little harder these days.

I left him with a stranger

2008-08-26T21:25:00.000-05:00

Ok well it wasn't really a stranger, it was his Awana teacher and my sister, brother in law and about 6 of my nieces and nephews were there but STILL I dropped him off and left! It was so hard.

Jonathan was so excited about AWANA but when he realized I wasn't staying, he grabbed my leg and clung to me. I remember doing that to my Mom. I never wanted her to leave my side. I promised him I'd be back. After about 10 minutes I was able to leave and as I looked back at him I saw him looking at me with those big brown eyes. I ran to the car where Jason and Zachary were waiting. We went to dinner and the entire time I kept thinking about the fact that I dropped my son off with someone he didn't know and how scared he must be. Mind you, Ms. Christa and Ms. Amy were very nice ladies but I hate seeing that boy sad.

As soon as the food was served I asked for the check. I inhaled my food and we practically ran from the restaurant...Jason's food left in a doggie bag with us. He ate too slow. I needed to be by my baby. I tried so hard to watch him from the window but couldn't see him. I saw my sister, a niece and a nephew walk by and figured if he wasn't attached to their leg, then he must have done ok.

He saw me and said, "Mommy I made a picture for you!" and smiled his gorgeous smile. Ms. Christa said he did just fine...no tears and it was good I didn't come back in like I had planned. He was ready to home (he had to go potty) and he told me how much fun he had and how Ms. Christa was so happy to see him! He wants to go back and said he knows Mommy can't stay but that Mommy will always be back to get him! One down, one to go.

Next week: Preschool! (Not sure if I can handle that one!)

As for little Z man well he had another Parents As Teacher meeting and she said she was so happy to see so much improvement with him and him trying to sit up. He can't quite do it yet but has made huge progress in one month. She gave us some exercises to do with him. However, he proudly showed off his ability to do "So Big!" for her. Here is a video (it took me a week to get it!) and please forgive my high pitched baby talk voice!

Various Updates

2008-08-20T20:27:00.000-05:00

Zachary was referred from one Urologist to another for his undescended testicles (I am sure when he is 9 years old he will kill me for sharing this info) due to the fact that they are still up in the abdominal area. We met with a very nice doctor who informed me that he would like to do the surgery shortly after his 1st birthday. They are going to schedule it and give me a call. Let's hope it is in 2008 so that it's FREE! I know that sounds petty but seriously, it would be less stress for us!!!

Anyway it will be done as outpatient and he will have 4 incisions...2 in the abdominal area and 2 in the scrotum area. I must admit, I am ready to get this over with.

As for developments, Z is trying super hard to sit up on his own and can manage it for a maybe a minute here and there. He now does "so big" but won't do it on command for the camera!!! He is starting seperation anxiety with me, Jason and Chelsea. And that is just so much fun...NOT! He is rolling and doing the army crawl a little bit. Overall, the little guy is doing wonderful.

My big little guy is gearing up to start preschool. I had the parent orientation and since it is a co-op program (at a nearby Lutheran Church) I have to volunteer to work the classroom and fundraisers 6-8 times a year. YIKES! I am stressing over that but from what I can tell the program is incredible. If Jonathan likes it, I will make it work. He will go Tues/Thurs from 9-12 and Chelsea has agreed to take him and pick him up. I am so grateful that her and Sally are able to work this out for us. I think it will be great for Jonathan. We have open house on 8/28 and then he starts on 9/2. I am really nervous and expect to shed a few tears.

We also signed him up for AWANA at my sister's church. He is really excited and told Grandma and Grandpa that he met his teacher Ms. Christa and that she was really nice. It is only one night a week so I think he will do okay there. He has lots of new and exciting things headed his way.

I just can't believe my babies are getting so big.