This year has taught us many lessons but being thankful is one we tend to think about daily as we watch Liam grow into a little boy. Can you imagine being a child or a parent of a baby who is in the hospital during the holidays? Its bad enough at any time but during a time typically spent with family celebrating, I would think its a bit more cruel.
Liam decided he wanted to put some smiles on the faces of other kids, I know, ambitious at 12 months old, and do a toy drive. CHOP has put together a holiday wish list, much like the tree's you see at the mall and church, looking for specific toys, clothes, activities for kids. We will accept all donations up until December 13th, unwrapped. We will head to CHOP that week to deliver the gifts to the Child Life, Education and Creative Arts Therapy Department.
When Liam had the chest tubes and couldn't move much, there was a light up toy that showed birds flying and chirping- something Liam loved and it meant a lot to us to see his eyes light up despite being positioned only one way. These are the kinds of toys that can really make a difference for other kids, please consider joining us and participating! The list has toys, gift cards, clothing, phone cards, etc.
Here is a link to the list. Please contact me directly if you'd like to help and participate: theresambrown@gmail.com
http://www.chop.edu/export/download/pdfs/articles/child-life-education-and-creative-arts-therapy/2010-holiday-wish-list.pdf
Tuesday, November 23, 2010
Thursday, November 18, 2010
Health Updates
Its been a while since I've updated the blog on the health side- I'll do that now and then later, add some fun pictures to make it worth reading!
We spent a whole day at CHOP last week in cardiology, endocrinology and then the labs getting a ton of blood from the little guy. Despite the 9 hours in the car and waiting, he did wonderful. The echo on his heart showed what we already knew, a pulmonary valve leak (in fact, it was cut right through), two residual VSDs (holes) around the repair. What it really showed was the heart was functioning exactly how it should and the two little holes are smaller than they really should be, which means his tissue is healing really well. His oxygen level was 99 as soon as she put the machine on him. And his EKGs showed no abnormalities. We are going back in 6 months and if all continues to look well, eventually just annual exams. The only negative, which we knew but don't like to think about, is that he will need another surgery to repair the pulmonary valve. CHOPs team just doesn't know if it will be in the next 5 years, or 20, 30, down the road. Many tet repairs like Liam are having the valve repair in the teenage years. The doctor was optimistic if it was when he was a teenager, it might not be open heart but rather the catheter. It would mean wonderful things for recovery and discomfort, which makes us hopeful.
Endocrin was really more of a courtesy- he is on thyroid medicine as a safeguard for neuro development more so out of necessity. His bloodwork came back today and his thyroid levels look perfect. We will probably remain on this medicine through 2 years of age at the earliest.
We then had blood pulled to check his immune system and we heard the results today- the doctor didn't expect to see much change from August, and overall, there wasn't much. His t-cell levels (the generals of the immune system) are still at about half of what most people have. However, those that are there are doing a great job because his immunoglobins (IGG) went up again and are now in the normal range! He will need to remain on the Bactrim and we will do another blooddraw in 3 months. Unfortunately, he cannot do any live vaccines for a while, possibly years, and this includes Chicken Pox, Measles, Mumps, etc. So we have to put our faith in other parents to get their children vaccinated to protect him. Sigh. Hopefully these issues resolve over the next two years or we are going to have to figure out what to do about preschool. He will need to remain out of daycare settings so it looks like Mom is home for now.
Earlier last week, we met our new pediatrician in NJ and she was great. Liam is growing so much he no longer even fits on the DS charts so on the "typical" chart, Liam is at 50% for weight and 10% for height and head circumfrence. He was 22 lbs, 6 oz, 28 1/4 inches. He was given all of the non live vaccines though so we are up to date on that.
Today, I met with the NJ Early Intervention evaluators and it was really quite reassuring compared to the way Virginia operates. Out of 7 areas, Liam is a typical 12 month old. None of these areas are special needs or DS specific, but all kids. In fact, he is advanced in 1 or 2, more of a 14-16 month old. For those who know him, yes, its the social aspect, surprise surprise, he is like Mom and Grandpa Brown.
He is delayed, probably about 3-4 months, on the gross motor skills. This explains the crawling/standing transitions but also reassures us too. He was on his back 10 weeks of his life so far, and then under restrictions for another 4 weeks. This basically equals his delay. The promising thing is that he is way beyond in other areas, communication mostly. He is doing more than other 12 month olds can at this point and its because he was unable to do a lot in the hospital. We know where we need to focus his therapies on and will be doing that. He might cry a lot but I think doing therapy here is going to get him a lot further along.
It gives me a lot of hope- every specialist has now told us he is high functioning. All of the original fears after the surprise diagnosis kind of melt away each time we hear this. Watch out ladies, he is apparently an excellent flirt, according to the report too. Young women in scrubs gets him everytime- cooing and cuddling. Much smoother than Daddy.
We spent a whole day at CHOP last week in cardiology, endocrinology and then the labs getting a ton of blood from the little guy. Despite the 9 hours in the car and waiting, he did wonderful. The echo on his heart showed what we already knew, a pulmonary valve leak (in fact, it was cut right through), two residual VSDs (holes) around the repair. What it really showed was the heart was functioning exactly how it should and the two little holes are smaller than they really should be, which means his tissue is healing really well. His oxygen level was 99 as soon as she put the machine on him. And his EKGs showed no abnormalities. We are going back in 6 months and if all continues to look well, eventually just annual exams. The only negative, which we knew but don't like to think about, is that he will need another surgery to repair the pulmonary valve. CHOPs team just doesn't know if it will be in the next 5 years, or 20, 30, down the road. Many tet repairs like Liam are having the valve repair in the teenage years. The doctor was optimistic if it was when he was a teenager, it might not be open heart but rather the catheter. It would mean wonderful things for recovery and discomfort, which makes us hopeful.
Endocrin was really more of a courtesy- he is on thyroid medicine as a safeguard for neuro development more so out of necessity. His bloodwork came back today and his thyroid levels look perfect. We will probably remain on this medicine through 2 years of age at the earliest.
We then had blood pulled to check his immune system and we heard the results today- the doctor didn't expect to see much change from August, and overall, there wasn't much. His t-cell levels (the generals of the immune system) are still at about half of what most people have. However, those that are there are doing a great job because his immunoglobins (IGG) went up again and are now in the normal range! He will need to remain on the Bactrim and we will do another blooddraw in 3 months. Unfortunately, he cannot do any live vaccines for a while, possibly years, and this includes Chicken Pox, Measles, Mumps, etc. So we have to put our faith in other parents to get their children vaccinated to protect him. Sigh. Hopefully these issues resolve over the next two years or we are going to have to figure out what to do about preschool. He will need to remain out of daycare settings so it looks like Mom is home for now.
Earlier last week, we met our new pediatrician in NJ and she was great. Liam is growing so much he no longer even fits on the DS charts so on the "typical" chart, Liam is at 50% for weight and 10% for height and head circumfrence. He was 22 lbs, 6 oz, 28 1/4 inches. He was given all of the non live vaccines though so we are up to date on that.
Today, I met with the NJ Early Intervention evaluators and it was really quite reassuring compared to the way Virginia operates. Out of 7 areas, Liam is a typical 12 month old. None of these areas are special needs or DS specific, but all kids. In fact, he is advanced in 1 or 2, more of a 14-16 month old. For those who know him, yes, its the social aspect, surprise surprise, he is like Mom and Grandpa Brown.
He is delayed, probably about 3-4 months, on the gross motor skills. This explains the crawling/standing transitions but also reassures us too. He was on his back 10 weeks of his life so far, and then under restrictions for another 4 weeks. This basically equals his delay. The promising thing is that he is way beyond in other areas, communication mostly. He is doing more than other 12 month olds can at this point and its because he was unable to do a lot in the hospital. We know where we need to focus his therapies on and will be doing that. He might cry a lot but I think doing therapy here is going to get him a lot further along.
It gives me a lot of hope- every specialist has now told us he is high functioning. All of the original fears after the surprise diagnosis kind of melt away each time we hear this. Watch out ladies, he is apparently an excellent flirt, according to the report too. Young women in scrubs gets him everytime- cooing and cuddling. Much smoother than Daddy.
Thursday, November 11, 2010
Birthday Boy Reflection
A year ago tonight at 11:50 pm, my life forever changed. I didn't just become a new Mommy, I became a new person. I'd often wondered over the years about my career, where I would be in a few years, how quickly I could prove myself- it became a closed chapter when Liam entered this world. I didn't realize how important my career, my "grooming" would help me help my son or push me into my only role without ever looking back. Politics, fundraising, lobbying, advocating- my best client will be my little man.
A crash course in pediatric cardiology and Down Syndrome quickly followed his arrival and while I was scared of death, more than once this last year, we made it here. One year old. Take that insensitive NICU doctor who broke the news to us as if we were learning about the Giants game. "He may or may not survive, he will be docile, probably not speak much and sleep most of the day." All with a smile on his face, 8 hours after I gave birth as I held my son on my chest.
In a year, Liam has done quite a bit- he's had his first word, he can sit, he can commando crawl...backwards, laugh and light up a room, pull you in and give you the best kiss in the world. But this 22 lb little monkey also fought like hell, through hell, and he is here to show those insensitive doctors, strangers on the street, expectant parents given what seems to be devestating news- its ok. He is no different than you or me. It will be ok. Breathe.
Ah, breathing. There were a few weeks he couldn't even breathe. His heart was sick, he couldn't breathe and these two everyday things we take for granted- he got through that with scars that still give me pause. He is proof of the power of prayer, love, support, amazing technology. Liam is not typical, he has given us enough stress to last a lifetime but knowing where we are today, its worth it. He is one of the happiest babies I've seen, he loves with his heart and eyes. And he can breathe now. His heart beats pretty darn good now too.
Life twists, turns, offroads and speeds away from us all. I had both my highest moments and quite a few lowest of the low moments I hope to ever have in my lifetime in the last 365 days. Liam makes me who I am, he gets me through a tough moment with the twinkle in his eye and little things, who cares anymore?
Thank you William Michael Kuhns- you have taught me more about who I am in the last year than I knew in the previous 30. I can't wait to share our life growing with you and seeing the world in your eyes.
A crash course in pediatric cardiology and Down Syndrome quickly followed his arrival and while I was scared of death, more than once this last year, we made it here. One year old. Take that insensitive NICU doctor who broke the news to us as if we were learning about the Giants game. "He may or may not survive, he will be docile, probably not speak much and sleep most of the day." All with a smile on his face, 8 hours after I gave birth as I held my son on my chest.
In a year, Liam has done quite a bit- he's had his first word, he can sit, he can commando crawl...backwards, laugh and light up a room, pull you in and give you the best kiss in the world. But this 22 lb little monkey also fought like hell, through hell, and he is here to show those insensitive doctors, strangers on the street, expectant parents given what seems to be devestating news- its ok. He is no different than you or me. It will be ok. Breathe.
Ah, breathing. There were a few weeks he couldn't even breathe. His heart was sick, he couldn't breathe and these two everyday things we take for granted- he got through that with scars that still give me pause. He is proof of the power of prayer, love, support, amazing technology. Liam is not typical, he has given us enough stress to last a lifetime but knowing where we are today, its worth it. He is one of the happiest babies I've seen, he loves with his heart and eyes. And he can breathe now. His heart beats pretty darn good now too.
Life twists, turns, offroads and speeds away from us all. I had both my highest moments and quite a few lowest of the low moments I hope to ever have in my lifetime in the last 365 days. Liam makes me who I am, he gets me through a tough moment with the twinkle in his eye and little things, who cares anymore?
Thank you William Michael Kuhns- you have taught me more about who I am in the last year than I knew in the previous 30. I can't wait to share our life growing with you and seeing the world in your eyes.
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