Lessons Learned in 2 years

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!

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...

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!

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...

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

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

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

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

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

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

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

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"

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

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

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

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?

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

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!

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!

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

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!

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!

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

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!

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

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

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

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

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

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

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!

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

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!

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

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!

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

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

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!

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

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

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

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

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!

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!

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

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.