Happy Holidays,

Sorry this is a bit late but I hope everyone had a wonderful holiday! Here is a picture of Santa and Liam!

We had a crazy week leading up to Christmas including a trip to the ER with Liam which led to a few days of observation. Because of his immune system, with any type of fever we need to get him to an ER immediately. Last Friday, he was taking super long naps which is very rare and that night, he felt warm. Sure enough, it was 100.8, just over the 100.4 borderline. I called CHOP and was told get to St Peters and they would call ahead as should I. Alex drove while I made a ton of calls down there and explained about Liam's history but nontheless, at 6:30pm when we arrived, I had to go through it all again. We were put into the pediatrics ER in our own room and his temp was 102.4, just 20 minutes after I had taken it. We were admitted at 3am and moved to a room, but until then, we had all blood and urine samples, IV started for antibiotics and chest xrays. Of course every other kid there had RSV and were triaged in the hallway! A heart mom's worst nightmare.

Funny moment had to be walking Liam through the adult ER to the xray area past the man handcuffed to his bed being watched by two policemen. My guess was a DUI because I could smell the alcohol.

Around 4am, I went back and got a shower, packed a bag and took a 2 hour nap while Alex stayed with Liam in his room. We were put in isolation so any nurse or doctor who came in had to wear masks, gloves, etc and throw those out each and every time. Saturday morning was his worst moment, I got there about 10 minutes after he woke up and he was burning hot, 104.3, despite the Tylenol. His fever continually went up since we had arrived but this was the highest. He was so upset, hated life, snots out the wazoo and just crying- not our Liam.

Thankfully this last dose of Tylenol finally did it- this was his last fever and bad moments. Other than being unable to really sleep well during the day, we played, he drank bottles but wouldn't eat for us and just wanted to cuddle. All the blood work began to come back with nothing positive for what could be causing the fever. He had five rounds of IV antibiotics and by Sunday afternoon, we asked if we could leave. We were more concerned about staying in the hospital and exposing him at this point.

We were at the pediatrician the next morning for our Synagis shot anyway so Liam had an exam and the attending doctor at St Peters and our pediatrician had the same answer- viral head cold, will take him a few days at home to get rid of it. Its been over a week and he is still trying to kick the congestion- but I have also been sick for two weeks trying to get rid of it and so has Alex. Hopefully we will all get healthy and stop infecting one another asap.

In the meantime, Liam had an amazing Christmas. On Christmas Eve, Alex, Liam and I went to a children's mass and then out to dinner early. We were on the couch in pjs with a bottle of milk and hot chocolate for us big kids to watch the Grinch by 7:30pm and read our Christmas books. Santa went crazy this year as half the living room was full of toys for the little guy but he certainly has earned it. We are doing our best to not open toys until we move, which should be in about two weeks.

Christmas afternoon was the big family gathering and Liam loved seeing everyone, especially all of his cousins and watching them play. It was just a wonderful day, something we missed last year since we stayed home to keep him healthy.

At the end of the day, we are very lucky with his health- since being discharged in March, we have had only two ER visits and only one fever. He has done really well and is a fighter. The new year will only lead to greater things for Liam, who is now a whopping 23+ lbs. I cant believe he was 5 lbs only 13 months ago...the kid likes his food! I hope you and your families had an amazing holiday and if you're on the East Coast, enjoy the snow!!

Season of Hope

We are gathering the toys for CHOP's toy drive this week and I saw this message from CHOP today- they have created a message system for all the kids to see when they turn on the TVs in their room. If you have a few minutes to send some encouragement, please do!

http://giving.chop.edu/site/Survey?ACTION_REQUIRED=URI_ACTION_USER_REQUESTS&SURVEY_ID=3041

Being Thankful

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

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.

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.

Emma Grace

There are moments I'm beyond grateful for Liam- this morning is one of those. When I signed on to Facebook, one of the good CHOP friends I made posted an article about a little girl who passed this weekend. Her mom first met my mom while we were at CHOP, she was on the phone with social security trying to explain that she wouldn't leave her daughters side to get her a card and was pretty upset. Christina was feisty and I appreciated that when everything else seemed out of control, it was nice to know you can be still.

When I went back for Liam's follow ups, we sat together a few times for a few minutes and we talked about Emma and Liam. Their lives were so connected yet so different. Her Mother's Day gift was being able to take Emma outside to have fresh air. For the first time..Emma was 8 months old.

She is really one of the stronger people I met and her daughter Emma obviously got her fight from her Mommy. Christina needs your help- if you have a few dollars to spare, another CHD parent has begun a fund to help pay for the funeral costs.

Here are links to the article and fund. Please remember Emma and her family in your prayers.

http://www.delcotimes.com/articles/2010/10/19/news/doc4cbd07a47e27f105263195.txt?ref=nf

http://levibeers.com/2010/10/18/help-needed-for-baby-emma-graces-funeral-costs-please-share/

CHOP Walk Pics

It was a great event- sunny but breezy, sometimes cloudy but lots of fun for the kids. The Star Wars characters came, Elmo and the Phillies Phanatic, whatever he is. We raised over $3000, had a team of about 20 and played raffles, the kids played in all the games from Abby checking out the Tot Land and Tommy and Sean playing soccer. It was really special to see so many kids, DS or not, playing together.

Here are some of our pics from the event! Thank you to all who came out, donated and kept us in your thoughts!