I made a decision last week to return to Dr. Kate as her patient. It is about a 30 minute drive but I just haven't had the comfort level with any of the other doctors in the office. Once I called and set up the appointment, it was a huge relief. It's funny how other people can see things you are going through and you still can't...no matter how many times they tell you or how many people tell you.
I saw my endocrinologist and was finally put on cholesterol medicine. I tried to talk to her about my chest pains and anxiety but I couldn't. She referred me to my primary doctor and encouraged me to talk to them as she could tell my anxiety level was very high. So I've been told! I have been having chest pains for a few weeks. I do not think it is my heart nor do I think I am depressed, I just can not stop and relax. I have try and get it all done and if I can't, I get angry with myself. People say, "I don't know how you do it" but you see it is what it is and I don't think I am doing anything more than anyone else. This is life. This is my life. I am blessed, so very blessed and I should be happy and enjoying it. I am happy (I think), I am just not taking care of myself or to be honest, enjoying much. No I don't want a pity party and I don't want to be a martyr. I am just stating the facts. I know I have it good but for some reason, I can not get my mind to slow down and allow myself to relax and enjoy. Yes I have stress...work, home, money, kids and making it all work together and keeping everyone happy. Everyone but myself.
Little did I know that the old saying is true...If Momma ain't happy, no one is! Well Momma really isn't happy. When I saw Dr. Kate today it was like seeing an old friend and I felt safe. She was honest with me and I think she thought I was still in a bit of denial about anxiety. And I think I was too. She reminded me that if I were to look back over the last 3 years, I had dealt with a LOT of stuff. I knew that but other people deal wth a lot of stuff too. But yes, I am tired. I am tired of being tired. I am tired of not being able to relax and enjoy my beautiful family. I am tired of yelling and my kids and not talking to my husband because I focus on house work. I am tired of not taking care of myself and feeling run down. I agreed to try some medicine and see if it can help. I need something to help balance me out and I pray this does the trick. I kept thinking I had to make my own happiness but I don't even know how to do that. My calendar is full of appointments for Zachary and every year I say it will be less appointments the next year but then something else comes up. I am just trying to fix everyone else in my house and take care of them and I still feel like I am not doing enough. It's a silly circle of guilt!
Well it is time to stop the guilt, do what I can for my family but to make sure I do something for me and take time to stop and smell the roses before I miss out on the beautiful things in front of me. I hope all of you will slow down a bit too.
My choice in returning to Dr. Kate was a great one!
Friday, July 2, 2010
Sunday, June 20, 2010
Hello Stranger!
Ah, it's been a while...sorry about that.
The last few months have been crazy. Not bad, just crazy. We are still focusing on trying to find out what is wrong with Zachary, sleep wise. He does have a mild sleep apnea that does interfere with his breathing but the doc feels it is not a good idea to introduce a CPAP yet. I was happy with that. The pulmonologist put him on Nexium but then a week later we saw the gastro doc and he put him on Prevacid 24. The Prevacid is easier to give him. Of course as soon as we started giving it to him his left ear starts draining again. OMG are you serious?
Oh wait, I left that part out! In May his left ear was draining, I mean oozing like a runny nose...sorry! So we called the ENT and told them he had been on antibiotics 3 times since March and his drops were not going in the ear. She got us right in. His left ear was full of puss and the right ear had fluid and the tube was out but still in his ear. So we had to suction out the left ear and she pulled the tube out of his right ear. He did great. We went back 2 weeks later for a hearing test and he passed. Looked at his ears and both had fluid in them. She gave us the option of just getting tubes again or waiting 2 months to see if the fluid cleared up. I opted to wait. She said if he got one more infection between then and his appointment in July then we would just schedule tubes. So of course, we have a call into them waiting for the surgery date! :-(
So when the ear started oozing again last weekend and he ran a fever and cried of ear pain, I called the new pediatrician. He is wonderful! He was prompt and the staff was great and he discussed all my concerns. My favorite thing about him was that when he learned we were to become new patients 2 months ago, he went and looked up Noonan Syndrome. He asked me all kinds of questions about NS and Z. It was amazing!! He confirmed a double ear infection, agreed he needed a second set of tubes and told me to confirm with the ENT what he was doing to see if they had any objections. Wow, that was rare! He was truly amazing!!! Love him!
Zachary continues speech and physical therapy. He gets speech once a week and is doing great. His PT is concerned about his left hip/foot turning in so she suggested we get an xray to rule anything else out. We go see the ortho this week. I think then we will just have a follow up with pulmonologist and gastroentrologist in two months and his endocrinologist and geneticist in October. He will also get an eye exam in November. He is still being assessed for the special school district. At 3 years old he will age out of MO first steps for his therapies. If he qualifies for SSD then they will pick him up from daycare and take him to classes for SSD.
Jonathan has graduated from preschool (sob sob) and will start kindergarten in August! He will stay at the current daycare and ride a bus to and from school...I LOVE his school!!! He is such a good boy and he may be challenging for me at times but his teachers adore him and tell me how he never gets into trouble and he is so good! Makes his Mommy proud! T-ball is going ok...lots of rained out games but he's getting to like it. He was in my nephew's wedding Friday and looked so very handsome and did a great job!
Jason and I are chugging along. Working and trying to keep up with life and the boys. It takes it toll on you and we both agreed that we each need bit of time out alone and then of course a date night. Jason plays softball and I go sit at starbucks and chill. Date night is still to be determined. LOL I saw my endocrinologist last week and while my diabetes is all doing great and my weight is maintained, she put me on cholesterol meds. She said the standards they set for diabetics is pretty hard to maintain so she wants me to start some meds and see how it goes. Thank goodness for generics!!! We talked a bit and she suggested I talk to my regular doctor about anxiety issues. I have been in denial for a few months but have had several friends express concern for me. I will admit the last 3 years have been the hardest of my life and I have forgotten how to relax and how to have fun. I am not proud of the temper tantrums I have and how I yell at everyone. I have been having chest pains and just don't feel like I can do it all. I know I shouldn't feel like I have to but I do. I forget to stop and smell the roses. I know I have been extremely blessed and I have it pretty good but it's still hard. I am hoping the doctor can give me some advice. I will be honest, I am not into the idea of therapy and it is purely selfish...I can't give up any more time. I know that's bad but Z has too many appointments and I need my time for them, not me. But I will do what he suggests.
Anyway, we are all still here and doing well. I hope everyone has a very happy father's day.
To my Dad - I love you and am so glad that you are my dad!! Thank you!
To my Father-in-law - I am so blessed to have you in my life. Thank you!
To my husband - you are an amazing father and I love you more than you will ever know. I love how the kids adore you and want to be like you. Thank you!
The last few months have been crazy. Not bad, just crazy. We are still focusing on trying to find out what is wrong with Zachary, sleep wise. He does have a mild sleep apnea that does interfere with his breathing but the doc feels it is not a good idea to introduce a CPAP yet. I was happy with that. The pulmonologist put him on Nexium but then a week later we saw the gastro doc and he put him on Prevacid 24. The Prevacid is easier to give him. Of course as soon as we started giving it to him his left ear starts draining again. OMG are you serious?
Oh wait, I left that part out! In May his left ear was draining, I mean oozing like a runny nose...sorry! So we called the ENT and told them he had been on antibiotics 3 times since March and his drops were not going in the ear. She got us right in. His left ear was full of puss and the right ear had fluid and the tube was out but still in his ear. So we had to suction out the left ear and she pulled the tube out of his right ear. He did great. We went back 2 weeks later for a hearing test and he passed. Looked at his ears and both had fluid in them. She gave us the option of just getting tubes again or waiting 2 months to see if the fluid cleared up. I opted to wait. She said if he got one more infection between then and his appointment in July then we would just schedule tubes. So of course, we have a call into them waiting for the surgery date! :-(
So when the ear started oozing again last weekend and he ran a fever and cried of ear pain, I called the new pediatrician. He is wonderful! He was prompt and the staff was great and he discussed all my concerns. My favorite thing about him was that when he learned we were to become new patients 2 months ago, he went and looked up Noonan Syndrome. He asked me all kinds of questions about NS and Z. It was amazing!! He confirmed a double ear infection, agreed he needed a second set of tubes and told me to confirm with the ENT what he was doing to see if they had any objections. Wow, that was rare! He was truly amazing!!! Love him!
Zachary continues speech and physical therapy. He gets speech once a week and is doing great. His PT is concerned about his left hip/foot turning in so she suggested we get an xray to rule anything else out. We go see the ortho this week. I think then we will just have a follow up with pulmonologist and gastroentrologist in two months and his endocrinologist and geneticist in October. He will also get an eye exam in November. He is still being assessed for the special school district. At 3 years old he will age out of MO first steps for his therapies. If he qualifies for SSD then they will pick him up from daycare and take him to classes for SSD.
Jonathan has graduated from preschool (sob sob) and will start kindergarten in August! He will stay at the current daycare and ride a bus to and from school...I LOVE his school!!! He is such a good boy and he may be challenging for me at times but his teachers adore him and tell me how he never gets into trouble and he is so good! Makes his Mommy proud! T-ball is going ok...lots of rained out games but he's getting to like it. He was in my nephew's wedding Friday and looked so very handsome and did a great job!
Jason and I are chugging along. Working and trying to keep up with life and the boys. It takes it toll on you and we both agreed that we each need bit of time out alone and then of course a date night. Jason plays softball and I go sit at starbucks and chill. Date night is still to be determined. LOL I saw my endocrinologist last week and while my diabetes is all doing great and my weight is maintained, she put me on cholesterol meds. She said the standards they set for diabetics is pretty hard to maintain so she wants me to start some meds and see how it goes. Thank goodness for generics!!! We talked a bit and she suggested I talk to my regular doctor about anxiety issues. I have been in denial for a few months but have had several friends express concern for me. I will admit the last 3 years have been the hardest of my life and I have forgotten how to relax and how to have fun. I am not proud of the temper tantrums I have and how I yell at everyone. I have been having chest pains and just don't feel like I can do it all. I know I shouldn't feel like I have to but I do. I forget to stop and smell the roses. I know I have been extremely blessed and I have it pretty good but it's still hard. I am hoping the doctor can give me some advice. I will be honest, I am not into the idea of therapy and it is purely selfish...I can't give up any more time. I know that's bad but Z has too many appointments and I need my time for them, not me. But I will do what he suggests.
Anyway, we are all still here and doing well. I hope everyone has a very happy father's day.
To my Dad - I love you and am so glad that you are my dad!! Thank you!
To my Father-in-law - I am so blessed to have you in my life. Thank you!
To my husband - you are an amazing father and I love you more than you will ever know. I love how the kids adore you and want to be like you. Thank you!
Monday, May 3, 2010
Two more diagnoses
Today was an eventful day for little Z. We headed down to Cardinal Glennon to get his speech evaluation (we tried last Thursday but it was a bust due to a missed nap!) and he did great. For his age he should have scored between 85-115 for his age. For his receptive speech he scored a 105, for expressive he scored an 87 and for the third one (can't recall the name) he scored a 75. Due to a few other things and the way he responded during the test they came to the conclusion that he has dyspraxia. He is unable to physically articulate some words. I was hesitant of this diagnosis but I found a website (http://www.dyspraxiausa.org ) and the early symptoms listed there made me gasp for air. A few of the symptoms I read described my Z perfectly:
- Irritable and difficult to comfort - from birth - If you have met Z in the evening, you know this!
- Feeding difficulties: milk allergies, colic, restricted diet - feeding tube, lots of different bottles
- Sleeping difficulties: problems establishing routine, requires constant adult reassurance - has never slept through the night
- Delayed early motor development: sitting unaided, rolling from side to side: do not usually go through the crawling stage - OMG he never crawled! And was delayed on all of these
- High levels of motor activity: constantly moving arms and legs - a little unsure of this one
- Repetitive behaviours: head banging or rolling - He rolls his head back and forth to go to sleep and always has
- Sensitive to high levels of noise - Well not so much
- Continued problems with development of feeding skills - I think so
- Toilet training may be delayed - too early to tell
- Avoids constructional toys such as jigsaws and Lego - Not so much
- Delayed language development: single words not evident until age 3 - Not so much
- Highly emotional: easily distressed, frequent outbursts of uncontrolled behaviour - Um hello?! YES!!!
- Concentration limited to 2 or 3 minutes on any task? - Isn't that all 2 year olds?
While I know this is just my high uneducated guess or maybe a mother seeking reasons for her childs delays, I'm not sure but this sure does sound a lot like Z.
After this meeting I got an email for the behavioral pediatrcian (Did I mention that the idea of the physician emailing it's patients is the best thing ever???) saying that his sleep results were in. Z has a mild sleep breathing disorder. Since his tonsils are already out they suggested we see a pulmonologist to discuss a CPAP or BiPAP machine. The alternative (I guess for more laid back parents) was to seek further treatment if condition worsens and follow up in 12 months with another study. I am so NOT the laid back mother and opted for option 1. This child has got to sleep!!!
And this my friends had made today a very interesting day! However, no matter how many diagnoses we are faced with, one thing will always remain the same...Zachary is Zachary and he is wonderful, charming and an absolute love. He is my blue-eyed boy that can melt my heart with his smile and he is worth every trip to the doctor, every dollar spent and every tear I've cried. I will forever adore him and even in the toughest moments, I will fight for this boy to the end!
As for my Jonathan, he is loving his t-ball practice. First 2 games were rained out but he was so happy that grandma and grandpa F. were here to see his parade. He was a bit shy as usual but he is coming around. We went to get him fitted for a tux for an upcoming wedding and the guy said, "If he isn't in football you better sign him up like tomorrow!". He is 5 years old and we had to order a size 10 tuxedo jacket!
Monday, April 26, 2010
We Survived
Last night was the sleep study for Zachary at St. John's. I went in expecting the worst. We brought his stuffed monkey, a veggie tales movie, a banana, a book and his Wow Wow Wubbzy blanket. We arrived at 730 pm and the technicians were wonderful. Our room had a hospital bed pushed up against a double bed, a desk and was decorated so cute. Z was a bit nervous and kept saying "Ow". But they gave us a bit of time to settle in and then he began hooking him up to the 10,000 wires. He did great! He whined a bit but once the tech showed him it was just stickers and asked him the color of the wires, he sat pretty still!
I was truly amazed at how smoothly it went! We settled in and began watching Veggie Tales. They came back in for the final "hook up" that involved a device under his nose and that was his least favorite. After we started the movie a second time he fell asleep pretty easily and so did I. He did wake up a few times and had pulled a few wires off so of course they had to come in to reconnect him. It was funny because I know one time when they came in I forgot where I was and I had a brief moment of panic, thinking we were in there for other reasons like him being sick! Luckily I snapped back to reality and convinced myself that my little guy was okay and all was well. I didn't get much sleep but it was worth it. I have to admit it was the first time in almost 2 and half years that I was glad that he didn't sleep all night. When he woke up screaming and kicking his legs, I was so glad that someone else was able to witness it. It can take 10 days for the results so now we just wait and be patient.
I was truly amazed at how smoothly it went! We settled in and began watching Veggie Tales. They came back in for the final "hook up" that involved a device under his nose and that was his least favorite. After we started the movie a second time he fell asleep pretty easily and so did I. He did wake up a few times and had pulled a few wires off so of course they had to come in to reconnect him. It was funny because I know one time when they came in I forgot where I was and I had a brief moment of panic, thinking we were in there for other reasons like him being sick! Luckily I snapped back to reality and convinced myself that my little guy was okay and all was well. I didn't get much sleep but it was worth it. I have to admit it was the first time in almost 2 and half years that I was glad that he didn't sleep all night. When he woke up screaming and kicking his legs, I was so glad that someone else was able to witness it. It can take 10 days for the results so now we just wait and be patient.
Sunday, April 25, 2010
Sleep Study
Well tonight we have Zachary's sleep study at St. John's. Z and I are to arrive at 7:30pm and it takes 30-45 minutes to hook him up and then lights and TV go off and we sleep. Funny isn't it? Sleep...he doesn't sleep good and this is going to be so very interesting. The paper said to limit my time in bed with him...ha ha ha! I mean seriously, the kid wakes up and screams, hits, kicks and they want me to not be in bed with him? I am dreading this. The person watching us is probably going to suggest I be admitted to the looney bin and you know what, I'm good with that! :-) The past few nights sleep has been worse than normal so I am anticipating no sleep tonight for me and I pray this test eliminates or pinpoints a problem. We just need to know where to go from here.
This week we have a Parents as Teachers appointment, speech therapy and a speech assessment at the developmental center. I have also requested an assessment with an occupational therapist. We started the paperwork to see if he will be eligible for therapy from the Special School District when he turns 3 and if he is, they will provide transportation to the early childhood center. As I stated before I am confused on what he needs so at this point I am relying the most on his developmental pediatrician to help me determine what he needs. They are increasing his speech to weekly and 2 weeks it will be done at preschool and 2 weeks at home.
Jonathan's first t-ball game is this Saturday and I am very excited for him. He is so very shy and I hope this will help him. And I can't wait to watch him and the other kids have fun.
We had a bad storm last night that sent the boys and myself to the basement for a while. It was crazy but luckily for us, no damage.
This week we have a Parents as Teachers appointment, speech therapy and a speech assessment at the developmental center. I have also requested an assessment with an occupational therapist. We started the paperwork to see if he will be eligible for therapy from the Special School District when he turns 3 and if he is, they will provide transportation to the early childhood center. As I stated before I am confused on what he needs so at this point I am relying the most on his developmental pediatrician to help me determine what he needs. They are increasing his speech to weekly and 2 weeks it will be done at preschool and 2 weeks at home.
Jonathan's first t-ball game is this Saturday and I am very excited for him. He is so very shy and I hope this will help him. And I can't wait to watch him and the other kids have fun.
We had a bad storm last night that sent the boys and myself to the basement for a while. It was crazy but luckily for us, no damage.
Thursday, April 15, 2010
More testing (again?)
I keep telling myself that each year will get better...by better I mean less appointments. Obviously things improved in 2009 and now again they have improved for 2010. We the departure of Dr. Kate I really felt lost. I felt abandoned, even though I know she is a person and has to do what is good for her and her family, it still felt like a loss...loss of a good friend. She got me and never made me feel like that mom. I feel like I have to start over. It sucks and stresses me out.
Anyway, we met with Dr. S today...she was Z's geneticist and is now in behavioral/developmental pediatrics. She is truly amazing. I adore her. It was funny because she arrived a bit late and saw Z through the window. She came in and hugged me and said how good he looked and how he grew and how happy she was to see us. Wow. I wanted to cry. I was shocked by the hug but it felt good. I knew then we made the best move for Z by coming to see her. Her office is really a center at Cardinal Glennon. They have lots of therapists and all were very friendly...even during Z's "you interrupted my nap people!" meltdown. These appointments are so stressful because he is so unpredictable and stupid me left the M&Ms in the car that morning so they were nice and melted. Duh! But we survived and got lots of good info.
She feels that Z needs weekly speech therapy and he will also be assessed by their SLP so that we can report that to Early Intervention and the Special School District. She doesn't want him lost in the system. She feels he has problems expressing himself through speech but understands a lot. She also wants him to do a sleep study and attend a behavior strategy therapy session. And she pointed out he has an umbilical hernia that we need to watch...it is rather small and doesn't seem to be a problem.
I am hoping we can do the sleep study at St. John's. The lung doc that saw him in the hospital was incredible and left Jason and I both feeling good about him. Well he is part of the sleep clinic there so I am hoping he can get him in right away but I am not sure what the procedure is for that. I did a bit of research and managed to find Dr. Rob's wife...that sounds funny huh? Well she is a pediatrician and she came in to see Z in the hospital and she checked his stats too. She too was incredible and I remember thinking how nice she was. I have a call into her office hoping she can take on the boys.
So we had a good appointment, learned more and will soon learn even more. The sleep study will also test Z for restless leg syndrome. I am hoping we get answers soon because sleep is needed in this house!
And today he bit a classmate and hit his teacher...he is sweet, really he is!
Anyway, we met with Dr. S today...she was Z's geneticist and is now in behavioral/developmental pediatrics. She is truly amazing. I adore her. It was funny because she arrived a bit late and saw Z through the window. She came in and hugged me and said how good he looked and how he grew and how happy she was to see us. Wow. I wanted to cry. I was shocked by the hug but it felt good. I knew then we made the best move for Z by coming to see her. Her office is really a center at Cardinal Glennon. They have lots of therapists and all were very friendly...even during Z's "you interrupted my nap people!" meltdown. These appointments are so stressful because he is so unpredictable and stupid me left the M&Ms in the car that morning so they were nice and melted. Duh! But we survived and got lots of good info.
She feels that Z needs weekly speech therapy and he will also be assessed by their SLP so that we can report that to Early Intervention and the Special School District. She doesn't want him lost in the system. She feels he has problems expressing himself through speech but understands a lot. She also wants him to do a sleep study and attend a behavior strategy therapy session. And she pointed out he has an umbilical hernia that we need to watch...it is rather small and doesn't seem to be a problem.
I am hoping we can do the sleep study at St. John's. The lung doc that saw him in the hospital was incredible and left Jason and I both feeling good about him. Well he is part of the sleep clinic there so I am hoping he can get him in right away but I am not sure what the procedure is for that. I did a bit of research and managed to find Dr. Rob's wife...that sounds funny huh? Well she is a pediatrician and she came in to see Z in the hospital and she checked his stats too. She too was incredible and I remember thinking how nice she was. I have a call into her office hoping she can take on the boys.
So we had a good appointment, learned more and will soon learn even more. The sleep study will also test Z for restless leg syndrome. I am hoping we get answers soon because sleep is needed in this house!
And today he bit a classmate and hit his teacher...he is sweet, really he is!
Thursday, April 8, 2010
Smile! Your on Camera!
I mentioned a while back that I shared Z's story on St. John's Mercy Children's Hospitals website and then we did an audio recording of it and well now I did a TV appearance! I hate my picture taken and I hate seeing myself on video but I was so excited to do this and when I was told the interview would be done by one of my favorite tv anchor women, I could not refuse! Every morning I watch Fox 2 News in St. Louis and I laugh along with the news cast and I feel like I know them! You can imagine my excitement at the possibility of seeing these people live and not just on tv! I felt like a 10 year old girl going to a Jonas Brother's concert!!!
I arrived at 7:45 and met Bethany from St. John's and she was very nice. I finally had the courage to ask her if the show was going to be live. Her response of course was, "Yes!" and then I felt the sudden urge to puke! But it was so exciting!
When we met Margie (Did I mention I love her?), I was star struck! She was nice, beautiful and OMG so put together! I just simply prayed my breath didn't stink and I didn't have anything hanging out of nose or anything from the kids left on my shirt! We went back on the set and my head was spinning! I saw John, the back of Glenn's head, Randi and Monica! I wanted to scream and run and touch each one of them and I wanted to take pictures. Yes, I was beyond star struck! Don't worry, I don't have a record of stalking so everyone is safe!
They hooked me up to a mic and there were like 10 monitors and people talking and they all sounded so together and looked beautiful and perfect. Why was I here? Oh that's right, it wasn't about me it was about the kids and letting families in St. Louis know we have a hospital for our children and it is awesome! The same hospital that can give adults wonderful care, also has a new wing to take care of our children! Who cares if I look awful and hate looking at myself in this video...it's for a good cause!
So here it is ladies and gentlemen, my TV debut!
STLMoms: St. Johns Mercy Children's Hospital Is Calling All Moms
Luckily I set the DVR, just in case it was live. When I got home tonight I showed the boys. Jonathan just giggled and giggled and said, "Mom that's you on TV!". Z finally saw it and said, "Mommy. Mommy. Mommy." and kept pointing to the tv and smiling. That said it all. Who cares what I look like...my little boy is alive and well! He is the classic 2 year old...terrible. LOL He is full of life, eager to learn and absolutely amazing! He has overcome so much and I don't think his struggles are over yet, but I know the worst is behind us and it is because of the doctors and nurses that cared for him and knew how to help him. I will always be forever grateful to all of them.
I arrived at 7:45 and met Bethany from St. John's and she was very nice. I finally had the courage to ask her if the show was going to be live. Her response of course was, "Yes!" and then I felt the sudden urge to puke! But it was so exciting!
When we met Margie (Did I mention I love her?), I was star struck! She was nice, beautiful and OMG so put together! I just simply prayed my breath didn't stink and I didn't have anything hanging out of nose or anything from the kids left on my shirt! We went back on the set and my head was spinning! I saw John, the back of Glenn's head, Randi and Monica! I wanted to scream and run and touch each one of them and I wanted to take pictures. Yes, I was beyond star struck! Don't worry, I don't have a record of stalking so everyone is safe!
They hooked me up to a mic and there were like 10 monitors and people talking and they all sounded so together and looked beautiful and perfect. Why was I here? Oh that's right, it wasn't about me it was about the kids and letting families in St. Louis know we have a hospital for our children and it is awesome! The same hospital that can give adults wonderful care, also has a new wing to take care of our children! Who cares if I look awful and hate looking at myself in this video...it's for a good cause!
So here it is ladies and gentlemen, my TV debut!
STLMoms: St. Johns Mercy Children's Hospital Is Calling All Moms
Luckily I set the DVR, just in case it was live. When I got home tonight I showed the boys. Jonathan just giggled and giggled and said, "Mom that's you on TV!". Z finally saw it and said, "Mommy. Mommy. Mommy." and kept pointing to the tv and smiling. That said it all. Who cares what I look like...my little boy is alive and well! He is the classic 2 year old...terrible. LOL He is full of life, eager to learn and absolutely amazing! He has overcome so much and I don't think his struggles are over yet, but I know the worst is behind us and it is because of the doctors and nurses that cared for him and knew how to help him. I will always be forever grateful to all of them.
Saturday, March 27, 2010
Spring is coming!
Well at least I hope so. The kids really need time outside and I try to let them get out there in the evenings but I don't feel too bad if we don't make it out because I know they are outside at school. Thank goodness!
I have let them eat dinner outside a few times and they love it. Our backyard needs a huge spring cleaning so for now, we play in the front. They love bubbles, sidewalk chalk and popsicles. If life could stay that simple forever, what life we would have!
Jonathan starts T-ball on the 29th and I am so nervous. He is excited so I am trying to run with that. He is really just becoming such a big guy. He adores his brother, has good manners and can be so polite and can talk your ear off! Then if he gets tired, all of that goes out the window. He is now loving school and is doing so good. I see improvements in his writing and the things he is learning...wow! I can't believe my baby is getting so big.
Zachary is moving along. He's got this little budda belly so most of his shirts are starting to get too small but then his pants, are just so long on him and quite often Jonathan and I will sing, "Pants on the ground" to him. He is trying to learn his colors and go potty on the big potty. His speech has taken off. His motor skills are coming along too. We are working on jumping and he loves this. He will say, "hop" and take your hand and hop and both feet come off the ground! He still has not mastered the steps but is trying so hard. His little head is full of knots from his daily falls and his tantrums where he headbutts stuff...one day he'll learn that that hurts and he'll stop, right? He loves school too and he loves books. He will bring books to me and say, "read" and this is all new to me so I am loving it. In April we will meet with his First Steps team, a representative from the special school district and from our school district to determine how we will handle his needs when he turns 3. He will graduate from First Steps and the SSD will take on his needs, if he should need any therapies.
As for sleep, we have none. Jason and I figured out that he sleeps good the first 3 or 4 hours and then he is up every 1-2 hours crying, screaming and hitting. It is miserable and April 15th can not come soon enough. We see his geneticist who is now a behavioral development pediatrician and she is going to discuss a sleep study and all sorts of stuff. Everyone is puzzled as to why he does this when he is in bed with us! He searches for my face and cups my face or will ask for my hand and he is awake because he will talk to me. It is truly exhuasting and is taking it's toll on our family so it is time for us to get some help.
I have let them eat dinner outside a few times and they love it. Our backyard needs a huge spring cleaning so for now, we play in the front. They love bubbles, sidewalk chalk and popsicles. If life could stay that simple forever, what life we would have!
Jonathan starts T-ball on the 29th and I am so nervous. He is excited so I am trying to run with that. He is really just becoming such a big guy. He adores his brother, has good manners and can be so polite and can talk your ear off! Then if he gets tired, all of that goes out the window. He is now loving school and is doing so good. I see improvements in his writing and the things he is learning...wow! I can't believe my baby is getting so big.
Zachary is moving along. He's got this little budda belly so most of his shirts are starting to get too small but then his pants, are just so long on him and quite often Jonathan and I will sing, "Pants on the ground" to him. He is trying to learn his colors and go potty on the big potty. His speech has taken off. His motor skills are coming along too. We are working on jumping and he loves this. He will say, "hop" and take your hand and hop and both feet come off the ground! He still has not mastered the steps but is trying so hard. His little head is full of knots from his daily falls and his tantrums where he headbutts stuff...one day he'll learn that that hurts and he'll stop, right? He loves school too and he loves books. He will bring books to me and say, "read" and this is all new to me so I am loving it. In April we will meet with his First Steps team, a representative from the special school district and from our school district to determine how we will handle his needs when he turns 3. He will graduate from First Steps and the SSD will take on his needs, if he should need any therapies.
As for sleep, we have none. Jason and I figured out that he sleeps good the first 3 or 4 hours and then he is up every 1-2 hours crying, screaming and hitting. It is miserable and April 15th can not come soon enough. We see his geneticist who is now a behavioral development pediatrician and she is going to discuss a sleep study and all sorts of stuff. Everyone is puzzled as to why he does this when he is in bed with us! He searches for my face and cups my face or will ask for my hand and he is awake because he will talk to me. It is truly exhuasting and is taking it's toll on our family so it is time for us to get some help.
And here is a recent picture of the boys outside...
Friday, March 19, 2010
Happy Birthday Mom!
Today is my Mom's birthday. I miss her terribly and wish she was here. I know she is pain free and watching all of us from above. Yet, it still hurts.
This morning the boys and I said (well Jonathan yelled) "Happy birthday Grandma!" and blew kisses up to heaven. We know she got them.
Then I took the boys to school, did some laundry and cleaning, registered Jonathan for kindergarten (gasp!), went to the grave site with my sisters and then had lunch at the Blue Owl. It was a beautiful warm sunny day and we ALL got along! It was perfect and I was sad for it to end. Mom would have enjoyed it.
The boys are doing well. Zachary goes to see the Pediatric behavioral development doctor on April 15th. She is going to discuss his sleep issues and possible order a sleep study for him. She is his geneticist so she will obviously know his history and have experience with Noonan Syndrome. I adore her and can't wait to see her and see what advice she has for us. Zachary is going through a "mean" stage...hitting, biting and such. Oh joy! He had his orthotics adjusted as he was getting a sore spot on his right foot. His speech is coming along and we are still working on the steps. That is going to be a long time before we get there!!! But he has come this far and overcome so many obstacles, I know he will catch up and do great.
St. John's Mercy Medical Center, where he had his surgeries for the broviac line and where he was for 2 weeks was asking for stories for their new Children's hospital's website. I submitted Z's and it is now on there site. Click here to read it. Although if you've read my blog, you already know his story. I got an email 2 days ago and they want me to come in and record an audio version of his story. I am more than happy to do it because I want the world to know how great of a hospital SJMMC is! I hope one day I can pay it forward and help the hospital out.
Well Mom, I hope you ate lots of cake! Love you always!
This morning the boys and I said (well Jonathan yelled) "Happy birthday Grandma!" and blew kisses up to heaven. We know she got them.
Then I took the boys to school, did some laundry and cleaning, registered Jonathan for kindergarten (gasp!), went to the grave site with my sisters and then had lunch at the Blue Owl. It was a beautiful warm sunny day and we ALL got along! It was perfect and I was sad for it to end. Mom would have enjoyed it.
The boys are doing well. Zachary goes to see the Pediatric behavioral development doctor on April 15th. She is going to discuss his sleep issues and possible order a sleep study for him. She is his geneticist so she will obviously know his history and have experience with Noonan Syndrome. I adore her and can't wait to see her and see what advice she has for us. Zachary is going through a "mean" stage...hitting, biting and such. Oh joy! He had his orthotics adjusted as he was getting a sore spot on his right foot. His speech is coming along and we are still working on the steps. That is going to be a long time before we get there!!! But he has come this far and overcome so many obstacles, I know he will catch up and do great.
St. John's Mercy Medical Center, where he had his surgeries for the broviac line and where he was for 2 weeks was asking for stories for their new Children's hospital's website. I submitted Z's and it is now on there site. Click here to read it. Although if you've read my blog, you already know his story. I got an email 2 days ago and they want me to come in and record an audio version of his story. I am more than happy to do it because I want the world to know how great of a hospital SJMMC is! I hope one day I can pay it forward and help the hospital out.
Well Mom, I hope you ate lots of cake! Love you always!
Wednesday, March 10, 2010
Why
The last few weeks have been rough. Not a "feel sorry for me" rough, just rough. The toll of Zachary not sleeping is really catching up with me. It has causes a lot of tension in the house and a lot of crankiness. Winter itself has been depressing this year. Money has been tight. Sicknesses have been less but when they came, they hit hard.
All this "roughness" has caused me to question why I was blessed with these 2 wonderful boys. I don't feel worthy. I am not patient and sometimes I am not kind. I yell and scream and I do that a lot. I love my two boys with all my heart and would die for them. I am so blessed, I am so lucky and no matter how rough things get, I am happy. I just wish I felt like a better person, mother, wife and friend.
No worries, I am not "in a bad place" and I don't really feel sorry for myself. I am just tired. Some days I cry from exhaustion and some days I eat to keep from falling asleep. I use food as my source of comfort and that is so wrong. I want my boy to sleep. I want my family to sleep. I want to be the best that I can be because those two little boys in the other room deserve the best. This Mommy gig is so hard and I am sick of the "stepford" mom's making it look easy. Let's get real here!
The one thing I have learned since I became a Mother is the simple fact that you do lose yourself and you forget to take care of yourself. I think when a woman becomes a Mother, there needs to be a book on this issue. I know so many other women who would make better Mother's than me. God chose me for a reason and my children are with me for a reason. I know they make me a better person but I just hope and pray that I am doing some good for them. I see them picking up my bad habits and it is so hard to see your sweet child pick up your worst traits. No baby raising books prepare you for that! It is a huge slap in the face. I am so far from perfect and my parenting ways are so very far from perfect.
As my sister told me, I am doing the best I can the best way I know how. I just hope it is enough. I hope if I live to be 80, my boys still love me enough to come visit me. They really are worth it and I think when we all learn to sleep, life in our home will be much better!
All this "roughness" has caused me to question why I was blessed with these 2 wonderful boys. I don't feel worthy. I am not patient and sometimes I am not kind. I yell and scream and I do that a lot. I love my two boys with all my heart and would die for them. I am so blessed, I am so lucky and no matter how rough things get, I am happy. I just wish I felt like a better person, mother, wife and friend.
No worries, I am not "in a bad place" and I don't really feel sorry for myself. I am just tired. Some days I cry from exhaustion and some days I eat to keep from falling asleep. I use food as my source of comfort and that is so wrong. I want my boy to sleep. I want my family to sleep. I want to be the best that I can be because those two little boys in the other room deserve the best. This Mommy gig is so hard and I am sick of the "stepford" mom's making it look easy. Let's get real here!
The one thing I have learned since I became a Mother is the simple fact that you do lose yourself and you forget to take care of yourself. I think when a woman becomes a Mother, there needs to be a book on this issue. I know so many other women who would make better Mother's than me. God chose me for a reason and my children are with me for a reason. I know they make me a better person but I just hope and pray that I am doing some good for them. I see them picking up my bad habits and it is so hard to see your sweet child pick up your worst traits. No baby raising books prepare you for that! It is a huge slap in the face. I am so far from perfect and my parenting ways are so very far from perfect.
As my sister told me, I am doing the best I can the best way I know how. I just hope it is enough. I hope if I live to be 80, my boys still love me enough to come visit me. They really are worth it and I think when we all learn to sleep, life in our home will be much better!
Thursday, March 4, 2010
In like a Lion?
Well not sure if it is a lion but it has been a tough week and I just blame it on the old saying that March comes in like a lion and goes out like a lamb.
As a child I hated March! When my Mom told me that March came in like a lion, I hated March at that moment. Well, I really hated tornadoes and March is when we seemed to get them the most. I loved the Wizard of Oz and I think from that movie came my disgust/fear of tornadoes. I did not want to be swept away by a tornado. That was my biggest fear growing up. My sister (yes you Debbie) use to tease me because I cried almost every time the wind blew. I mean I really feared tornadoes.
Every time March came around, I counted down until the end of the month so I could embrace the lamb part of the month.
On Monday I learned that our family doctor just left the practice! My beloved Dr. Kate is gone and I felt like I was left hanging in the wind. Who was going to calm me down when I freaked out about all of Z's issues? So I decided to email his geneticist to find out of she could refer someone too me and to ask her questions about his sleep issues. I get an email back telling me she is no longer practicing genetics. OMG are you serious? We lost 2 doctors in 3 days??? Well the good news is that she still sees kids with genetic disorders and hinted that she would like to see Z so she could refer him for a sleep study. Okay that made me feel better!
I also discovered Dave Ramsey and am eager to start his total money makeover plan! Our first step is to create our emergency fund of $1000. Oh.Dear.God. I figure by 2012 we will be there...hoping that isn't true! I made a list of ALL our debts and included the medical as he suggested. It's a long list and that made me sad but I know what we are up against and we are going to knock it out one creditor at a time. I dream of the day that I have no debt and I can give to people and help others out. That is my goal!
Dave says...Debt is Dumb!
As a child I hated March! When my Mom told me that March came in like a lion, I hated March at that moment. Well, I really hated tornadoes and March is when we seemed to get them the most. I loved the Wizard of Oz and I think from that movie came my disgust/fear of tornadoes. I did not want to be swept away by a tornado. That was my biggest fear growing up. My sister (yes you Debbie) use to tease me because I cried almost every time the wind blew. I mean I really feared tornadoes.
Every time March came around, I counted down until the end of the month so I could embrace the lamb part of the month.
On Monday I learned that our family doctor just left the practice! My beloved Dr. Kate is gone and I felt like I was left hanging in the wind. Who was going to calm me down when I freaked out about all of Z's issues? So I decided to email his geneticist to find out of she could refer someone too me and to ask her questions about his sleep issues. I get an email back telling me she is no longer practicing genetics. OMG are you serious? We lost 2 doctors in 3 days??? Well the good news is that she still sees kids with genetic disorders and hinted that she would like to see Z so she could refer him for a sleep study. Okay that made me feel better!
I also discovered Dave Ramsey and am eager to start his total money makeover plan! Our first step is to create our emergency fund of $1000. Oh.Dear.God. I figure by 2012 we will be there...hoping that isn't true! I made a list of ALL our debts and included the medical as he suggested. It's a long list and that made me sad but I know what we are up against and we are going to knock it out one creditor at a time. I dream of the day that I have no debt and I can give to people and help others out. That is my goal!
Dave says...Debt is Dumb!
Saturday, February 27, 2010
The Sickies have left the building...
well or so we hope so anyway!
The last two weeks have been filled with stomach bugs, pink eye and sinus infections. It hasn't really been fun at all. But we all survived and I am still catching up on the housework.
We are all anxiously waiting the arrival of Spring! I think it got lost, yet March is near. March does come in like a lion and goes out like a lamb. It isn't even here yet and there has been an earthquake in Chile and a tusnami in Hawaii. And the snow that has been dropped on the US is absolutely crazy!
Next week I am volunteering at a local food bank, filling boxes to be distributed to low income families. It is manual labor that I am no use to but always makes me feel good. It is truly rewarding. I selected this organization because I know they help so many families in the St. Louis area and am donating my time and energy in memory of a very sweet little boy who's precious little life was too short. Thomas would be five years old on March 9th and every year I do something in his honor. His Mother is a wonderful, caring person and I want her to know that her little boy will never be forgotten and that I will do my part to make the world a little better because knowing her, and Thomas, has made me a better person.
Mom's birthday is also this month. I think I am going to do something for the Ronald McDonald house or family room in memory of her. I don't have the funds to just go and donate but I think I could do something small. Donate personal care items, a few toys or something they need. I am also saving the soda can tabs and will drop them off. I was always curious about the RMH since I was a young girl but never truly understood what it was until we had to use the room at St. John's when Zachary was there. Mind you, it was local and for only 2 weeks but it was a nice comforting safe escape from a scary reality and the services they provide to families is amazing. I think every year I will do something for them in memory of Mom. I hope as our financial situation improves, I can do more for them. So if any of you want to save your soda/beer can tabs and send them to me, I'd appreciate it. *hint hint*
Time for bed...Zachary is not sleeping well so I am beat!
The last two weeks have been filled with stomach bugs, pink eye and sinus infections. It hasn't really been fun at all. But we all survived and I am still catching up on the housework.
We are all anxiously waiting the arrival of Spring! I think it got lost, yet March is near. March does come in like a lion and goes out like a lamb. It isn't even here yet and there has been an earthquake in Chile and a tusnami in Hawaii. And the snow that has been dropped on the US is absolutely crazy!
Next week I am volunteering at a local food bank, filling boxes to be distributed to low income families. It is manual labor that I am no use to but always makes me feel good. It is truly rewarding. I selected this organization because I know they help so many families in the St. Louis area and am donating my time and energy in memory of a very sweet little boy who's precious little life was too short. Thomas would be five years old on March 9th and every year I do something in his honor. His Mother is a wonderful, caring person and I want her to know that her little boy will never be forgotten and that I will do my part to make the world a little better because knowing her, and Thomas, has made me a better person.
Mom's birthday is also this month. I think I am going to do something for the Ronald McDonald house or family room in memory of her. I don't have the funds to just go and donate but I think I could do something small. Donate personal care items, a few toys or something they need. I am also saving the soda can tabs and will drop them off. I was always curious about the RMH since I was a young girl but never truly understood what it was until we had to use the room at St. John's when Zachary was there. Mind you, it was local and for only 2 weeks but it was a nice comforting safe escape from a scary reality and the services they provide to families is amazing. I think every year I will do something for them in memory of Mom. I hope as our financial situation improves, I can do more for them. So if any of you want to save your soda/beer can tabs and send them to me, I'd appreciate it. *hint hint*
Time for bed...Zachary is not sleeping well so I am beat!
Sunday, February 7, 2010
And progress, progress, progress...
Here we are in Februrary already and it is the month of amazing things!
Jonathan is doing great at school. His writing is coming along and the things he is learning there are truly incredible. He is so compassionate and so much like his mother. I know my mom is looking down and chuckling because the things he is doing to me, I vividly recall doing to her. I hating leaving my mom (even at 12 years old!) and would cry and make up sicknesses and here my son is doing it to me. "but my neck hurts. If my neck hurts then I have a fever and I can't go to school with a fever." Oh boy! And we he gets mad at me he yells, "Don't worry about me, worry about yourself!" and these are words I say to him. Yikes. He is tired of winter and eager to get out to the country. He also wants to go back to Alabama and Iowa to visit family. We plan on camping in Iowa in early summer and visiting the family up there. We love to camp and this way we get to visit and camp...two things we love! Once the threat of snow passes we will probably head down to Alabama. I want to get Z situated at the new day care and use to a routine before we shake it up for him.
On to Zachary...we love our therapists! They are amazing. His speech is just coming along so well. Within the past five minutes he said, "Mommy I got tail" = "mommy I am pulling Harley's tail" and he climbs on the table and then says, "Mommy up oh" = " Mommy I'm up on the table Uh oh!". He loves to feed Harley, snack with him (ha) and give him water. He now calls his cup "pup" instead of "nee nee" but when he wants down from somewhere he says, "wee wee". He even said "Pup water" = "I want water in my cup". He is goofy, loving, a prankster, attention seeker, a biter and so moody! He loves Wow Wow Wubbzy and still bops his head to music and dances when he can. He is striving to be more independent.
As for Jason and I we are just working, paying bills, cleaning and all that normal stuff. We both know how lucky we are to still have jobs and are making huge strives in knocking out some debt. It is truly a great feeling. Jason has become the manager of our laundry...he does at least 1 load a night and then will do the rest over the weekend. I have to admit, I am so grateful. I would rather do laundry than dishes but one less thing that I have to do so I am just thrilled he is doing this! I got lucky and his Momma did a good job with him! So now I strive to keep up with the dishes and cook dinner because he is doing such a good job that I can't fall behind!
A friend of mine that I met online via a moms group about 3 years ago lives about 30 miles from me. Her mom has struggled with Pancreatic cancer for about a year and half. Sadly her mom passed away last weekend. I went to the visitation and was so happy to be able to hug her. The hug was not just from me but also from this wonderful group of women that we are a part of. I know many people thing this bond I have with these women is a bit unusual. I have come to realize all the different ways that people come into our life. If you are open minded, the possibilities are endless. Even though I have never met most of these women, they are such a huge part of my life. If any of you are reading this, please know how thankful I am to have you in my life. I know one day we will all meet and the hugs, tears, laughter and wine (ha!) flow continuously...what a time we will have!
Well, Z is doing his lastest trick that his cousins Sydney and Shelby taught him and he is playing behind the cushions of the couch and will fall asleep soon so I better go.
Jonathan is doing great at school. His writing is coming along and the things he is learning there are truly incredible. He is so compassionate and so much like his mother. I know my mom is looking down and chuckling because the things he is doing to me, I vividly recall doing to her. I hating leaving my mom (even at 12 years old!) and would cry and make up sicknesses and here my son is doing it to me. "but my neck hurts. If my neck hurts then I have a fever and I can't go to school with a fever." Oh boy! And we he gets mad at me he yells, "Don't worry about me, worry about yourself!" and these are words I say to him. Yikes. He is tired of winter and eager to get out to the country. He also wants to go back to Alabama and Iowa to visit family. We plan on camping in Iowa in early summer and visiting the family up there. We love to camp and this way we get to visit and camp...two things we love! Once the threat of snow passes we will probably head down to Alabama. I want to get Z situated at the new day care and use to a routine before we shake it up for him.
On to Zachary...we love our therapists! They are amazing. His speech is just coming along so well. Within the past five minutes he said, "Mommy I got tail" = "mommy I am pulling Harley's tail" and he climbs on the table and then says, "Mommy up oh" = " Mommy I'm up on the table Uh oh!". He loves to feed Harley, snack with him (ha) and give him water. He now calls his cup "pup" instead of "nee nee" but when he wants down from somewhere he says, "wee wee". He even said "Pup water" = "I want water in my cup". He is goofy, loving, a prankster, attention seeker, a biter and so moody! He loves Wow Wow Wubbzy and still bops his head to music and dances when he can. He is striving to be more independent.
As for Jason and I we are just working, paying bills, cleaning and all that normal stuff. We both know how lucky we are to still have jobs and are making huge strives in knocking out some debt. It is truly a great feeling. Jason has become the manager of our laundry...he does at least 1 load a night and then will do the rest over the weekend. I have to admit, I am so grateful. I would rather do laundry than dishes but one less thing that I have to do so I am just thrilled he is doing this! I got lucky and his Momma did a good job with him! So now I strive to keep up with the dishes and cook dinner because he is doing such a good job that I can't fall behind!
A friend of mine that I met online via a moms group about 3 years ago lives about 30 miles from me. Her mom has struggled with Pancreatic cancer for about a year and half. Sadly her mom passed away last weekend. I went to the visitation and was so happy to be able to hug her. The hug was not just from me but also from this wonderful group of women that we are a part of. I know many people thing this bond I have with these women is a bit unusual. I have come to realize all the different ways that people come into our life. If you are open minded, the possibilities are endless. Even though I have never met most of these women, they are such a huge part of my life. If any of you are reading this, please know how thankful I am to have you in my life. I know one day we will all meet and the hugs, tears, laughter and wine (ha!) flow continuously...what a time we will have!
Well, Z is doing his lastest trick that his cousins Sydney and Shelby taught him and he is playing behind the cushions of the couch and will fall asleep soon so I better go.
Sunday, January 31, 2010
What a month!
I can't believe that January is over! What makes it even harder to believe is that as of today, January 31st, we have not had one doctor appointment this month! Dr. Kate is probably missing us! Yes, we have PT and Speech but those are not because a child is sick so they do not count!
Zachary had an OT assessment to see if he has sensory issues. He doesn't. She gave us some ideas on things to try with him and then we will reevaluate him in 6 months. He is doing well. The boys had a stomach bug and it hit JD fast and left just as fast. It lingered with Z and it was not fun. He already has so many gagging/choking issues that I can never tell if it is the normal Z or a bug. We are working on getting him to eat crunchier/spicier foods as they tend to "wake up" the mouth. He has more choking episodes on soft foods because he has to shove his mouth full to feel the food in there. Most kids outgrow that as infants but when you have low muscle tone, it tends to take longer. We have lots of fun exercises to do with him. He does love his spicy food and will even eat Thai food and hot chips! We are working on having him look where he walks. He tends to just take off and not pay any attention to the stuff on the floor. We were told to make obstacle courses for him...thank goodness we have crap on the floor all the time so this is an easy task for us! He does stop, pick stuff up and occasionally will go into the tripod to push himself up rather than belly crawl to the table or wall. As for steps, oh dear. His short little legs make that tough. It is hard to see kids is age walking up and down steps and he can't. I know not to compare but it just makes me feel bad for him.
As for speech, he is saying a lot more words. His new favorite is "Mo", aka No. He has jumped full force into being a 2 year old and it is so much fun (rolling my eyes). He loves to hit, pinch, bite and spit...doesn't he sound lovely? Then he quickly hugs you and says he's sorry. We tried using the little insert on the toilet to see if he would go potty as he told me he wanted to, well he said "I do" when I asked, however, once in the bathroom he screamed "MO!" and grabbed the sesame street potty insert and put it in the cabinet and stomped out of the bathroom.
He is still on the Noonan's chart but on the "typical" chart his height and weight are not on the chart. He is about 32" and 25lbs. His brother however, is off the charts. Jonathan is 48" tall and 64lbs. The difference in the 2 is crazy!
Zachary will start daycare at Jonathan's school on Feb. 15th. He loves the school and all the toys. I love the school too and all the activities and learning that takes place there. Jonathan will start talking to me about the solar system, Martin Luther King, Jesus and God and I am just amazed at what he has learned. I am so very proud of the little man that my Jonathan is becoming. He is so loving and caring, sure he has his moments but he is a great kid.
The other day I learned of a baby girl that died from JMML. She was less than 1 year old and was treated by Z's doctors. I was talking to Jason about it and how lucky/blessed we were. While Z has the JMML gene, he is lucky because as we know his JMML is dormant. I have read stories of kids with JMML and kids with NS and why my little guy has been so lucky with both, is beyond a miracle. I wonder what His plans are for my little Z as the plans He has had for him over the past 2 years have been pretty amazing. My little blue eyed cutie has added so much to our family and I love how he and his brother adore each other.
Zachary had an OT assessment to see if he has sensory issues. He doesn't. She gave us some ideas on things to try with him and then we will reevaluate him in 6 months. He is doing well. The boys had a stomach bug and it hit JD fast and left just as fast. It lingered with Z and it was not fun. He already has so many gagging/choking issues that I can never tell if it is the normal Z or a bug. We are working on getting him to eat crunchier/spicier foods as they tend to "wake up" the mouth. He has more choking episodes on soft foods because he has to shove his mouth full to feel the food in there. Most kids outgrow that as infants but when you have low muscle tone, it tends to take longer. We have lots of fun exercises to do with him. He does love his spicy food and will even eat Thai food and hot chips! We are working on having him look where he walks. He tends to just take off and not pay any attention to the stuff on the floor. We were told to make obstacle courses for him...thank goodness we have crap on the floor all the time so this is an easy task for us! He does stop, pick stuff up and occasionally will go into the tripod to push himself up rather than belly crawl to the table or wall. As for steps, oh dear. His short little legs make that tough. It is hard to see kids is age walking up and down steps and he can't. I know not to compare but it just makes me feel bad for him.
As for speech, he is saying a lot more words. His new favorite is "Mo", aka No. He has jumped full force into being a 2 year old and it is so much fun (rolling my eyes). He loves to hit, pinch, bite and spit...doesn't he sound lovely? Then he quickly hugs you and says he's sorry. We tried using the little insert on the toilet to see if he would go potty as he told me he wanted to, well he said "I do" when I asked, however, once in the bathroom he screamed "MO!" and grabbed the sesame street potty insert and put it in the cabinet and stomped out of the bathroom.
He is still on the Noonan's chart but on the "typical" chart his height and weight are not on the chart. He is about 32" and 25lbs. His brother however, is off the charts. Jonathan is 48" tall and 64lbs. The difference in the 2 is crazy!
Zachary will start daycare at Jonathan's school on Feb. 15th. He loves the school and all the toys. I love the school too and all the activities and learning that takes place there. Jonathan will start talking to me about the solar system, Martin Luther King, Jesus and God and I am just amazed at what he has learned. I am so very proud of the little man that my Jonathan is becoming. He is so loving and caring, sure he has his moments but he is a great kid.
The other day I learned of a baby girl that died from JMML. She was less than 1 year old and was treated by Z's doctors. I was talking to Jason about it and how lucky/blessed we were. While Z has the JMML gene, he is lucky because as we know his JMML is dormant. I have read stories of kids with JMML and kids with NS and why my little guy has been so lucky with both, is beyond a miracle. I wonder what His plans are for my little Z as the plans He has had for him over the past 2 years have been pretty amazing. My little blue eyed cutie has added so much to our family and I love how he and his brother adore each other.
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