Well, we will be snowed in for a few days...again, so I figured I'd update the blog rather than clean up all of Liam's toys from today's adventures. We have started off the New Year with some follow ups with our specialists. We have half a dozen doctors in the first two months, not including normal pediatrician appointments.
So little man is no longer little. Just under 25 lbs now, he is talking all day long, he understands so many words and what we're saying to him and he has a typical up to no good little boy personality. When he is reaching for something, you say No Liam, he looks, smiles and continues to look at you as he reaches. And you can't help but laugh which isn't helping I'm sure but its adorable. We started Early Intervention and we will focus on gross motor where his delays really are- being able to transition into sitting, standing, crawling, etc. I also do a group class and private therapy, and not including playdates or Mommy and Me classes. Hopefully, this will show a lot of progress. And yes, Liam has a more exciting life than we do. Combined.
On the health front, we had another hearing test done this morning. His left ear canal had been so small in the past the diagnostic tests just couldn't get a reading. He did pass his newborn and because he communicates pretty well so while we weren't that worried, it was a nice relief to finally get a real reading today. His hearing is in the normal range. It took three of us to get the test done- I had to hold him against me and put his arms down so he couldn't grab the wires, or shake his head. Oh, or make any noise. Two doctors- one blew bubbles and one played peekaboo. And that was the recipe to finally get the test done correctly- four visits later. Phew.
The most exciting news for us was his recent immunology visit. The doctor thought he looked wonderful and he really is the picture of health- pink cheeks, uh chubby.., happy, etc. They ran blood tests to check all of his levels in the immune system, which we need to do every 3 months. Every number improved! And the b cells, who actually do all the work, they doubled- which is amazing. He was at 200 in August, 300 in November and now just over 600. Granted the low end of normal is 1200 but we're getting there..it just gives me that image of Liam being able to actually go to pre school at some point, not taking so many antibiotics, finally getting vaccinated- it brings us closer to normalcy. I never would have thought a year later we'd still be fighting complications, particularly when he looks so good, you wouldn't think he has little to no immune system. We are extremely thankful and grateful every day.
This day last year we were actually getting some big news- it had been ten days of Liam going backwards, breathing tubes, talks of preparing ourselves, two different sets of chest tubes and Liam in a constant state of induced paralysis. I hadn't held him. I could only touch his forehead, he had an IV in every leg and arm. He was finally stable enough to get a cardiac catheter to take a look at the heart because the echo showed no issues with the repair. They said it would be 4 hours. 45 minutes later, the nurse came very quickly and asked us to go into the consult room. I feared the worst. I think we all did- it was Alex, my father and I. Dr. Bird and Dr. Andy, I really don't remember his last name or if ever told me it, began to explain that when the dye they inserted into him was pumped, both chambers lit up and the 1 mm residual VSD around the patch blew up to almost 6 mm. I immediately realized it.
I can remember just sitting Indian style with my hand in my heads, looking up quickly and looking Dr. Bird in the eye and saying- You have to go back in, don't you? And seeing the concern and compassion in his face as he said yes. At that point, they didn't know if they were going to go in then or wait. Dr. Spray, his surgeon was on travel and he actually called, was able to review the catheter video and said he wanted to do the surgery himself. They scheduled it for first thing Wednesday morning. But they told us in no uncertain terms, if his status changes, the on call surgeon would go in immediately with their team.
We felt relief, it was a mixed emotion knowing he had to go back under and have the same dangerous surgery, by pass machines but we finally knew what was happening inside of his body and there was a way to fix it. His heart was mixing bloods and his lungs were getting 4 times the amount of blood it was supposed to be handling. And here we are today, a year later, fighting the complication of having all that fluid which drained his immune system out. Its so ironic. I was so worried about the surgeries when it was the recovery that mattered the most for Liam.
Ah anyway, sentimental feelings for the little guy at this time of year will always remain. I prayed a lot- mostly to my Aunt Cindy because at that point, I questioned God a lot and wasn't really all that happy with things. She passed away Jan 21, 2007, at a young age, leaving behind a beautiful family because of breast cancer. I talked to her a lot, outloud so I looked crazy at Liam's bedside probably but she was someone who taught me strength and a lot of perseverance. This time of year is always going to be tough but I'm convinced Cindy was with Liam the entire time during his fight and she gave me back my son. January is always going to be bittersweet- I was given my son back but I also lost someone so important to me. All this snow doesn't help either but I do remember at the end of her funeral service, it had begun to snow and that's what gets me through a winter like this, she loved to ski and tried to teach me.
Monday, January 31, 2011
Thursday, January 20, 2011
One Year Annivesary
One year ago yesterday, Liam and I took our first helicopter ride, from Virginia to Philly, which in retrospect, is frightening but kind of neat. We had spent almost 10 hours in our local emergency room and then once the crew arrived, they took over and I finally felt some relief. The pilot was a veteran, much older and could have been in the movie Good Morning Vietnam. I held onto Patton, Liam's teddy bear and he was strapped in a board. He was given sedation but never slept- a first for the crew in something like 600 flights. This is also true for napping..he isn't a big sleeper. The flight crew actually stopped to see us a few times after that night, which really was thoughtful, despite all the kids they work with, it was nice to know they thought of us. We flew into center city Philly about 11:30pm and landed quickly. I walked with Liam down to the 6th floor and met Dr. Bird, who would be a familiar face and a comfort to me over the next two months. He got me acclimated after examining Liam, worked him into the surgery schedule and walked us through what would happen. As he was doing this, Alex, Mom and Dad were labeling all the frozen breast milk that Alex drove up. Kind of weird....but it had to be done.
One year ago today, at about 9:30 am, I handed Liam over to the doctors outside the OR and said a quick prayer. I let everyone else, Mom, Dad and Alex, give him a kiss first and then I gave him a hug and kiss. Letting go was hard. In fact, the nurse had to pull him a little. He was supposed to be in his crib but I asked to carry him down the long hallways. It was a bittersweet moment, you know its best for him but you're frightened that you will never see him alive again. Open heart surgery is risky- Dr. Spray literally takes his heart out, it stops beating, he is iced down- I can't even think about all the details, which yes, I tried to read about but could never get through it. Our nurse made all the difference with our nerves, Mary Katherine. She kept us calm, gave us constant updates and a hug when we were told he was done within an hour, 3 hours less than they thought it would take. When Dr. Spray met with us after the surgery, I remember Mom telling him that she loved him, which broke the tension and we all laughed. Little did we know what was in store for us, but as bad of a 24 hours it was, it was good too. He was "fixed". And with Liam officially sedated and who would be sleeping for 12 more hours, I had a huge margarita and finally slept for the first time in 2 days.
Today, Liam and I went down to CHOP for a follow up immunology appointment. I guess I didn't think we would still be doing such frequent appointments, be on meds, or having to worry about things but honestly, its been an amazing year. There were a few parents who didn't bring their babies home, who lost them or are still waiting for repairs/transplants. We have to wait for the blood work results from today's visit, it will be about 10 days for all of it. The doctor is hopeful that he has improved since he did get through his fever hospitalization in December so quickly. We certainly hope so too!
We are beyond lucky and grateful for this little boy, because he definitely isn't a baby anymore at 24.6 lbs, who standing is past my knees and today said Bye for the first time! I couldn't have imaginied at this point last year being so damn happy, but we are..and we love this journey.
One year ago today, at about 9:30 am, I handed Liam over to the doctors outside the OR and said a quick prayer. I let everyone else, Mom, Dad and Alex, give him a kiss first and then I gave him a hug and kiss. Letting go was hard. In fact, the nurse had to pull him a little. He was supposed to be in his crib but I asked to carry him down the long hallways. It was a bittersweet moment, you know its best for him but you're frightened that you will never see him alive again. Open heart surgery is risky- Dr. Spray literally takes his heart out, it stops beating, he is iced down- I can't even think about all the details, which yes, I tried to read about but could never get through it. Our nurse made all the difference with our nerves, Mary Katherine. She kept us calm, gave us constant updates and a hug when we were told he was done within an hour, 3 hours less than they thought it would take. When Dr. Spray met with us after the surgery, I remember Mom telling him that she loved him, which broke the tension and we all laughed. Little did we know what was in store for us, but as bad of a 24 hours it was, it was good too. He was "fixed". And with Liam officially sedated and who would be sleeping for 12 more hours, I had a huge margarita and finally slept for the first time in 2 days.
Today, Liam and I went down to CHOP for a follow up immunology appointment. I guess I didn't think we would still be doing such frequent appointments, be on meds, or having to worry about things but honestly, its been an amazing year. There were a few parents who didn't bring their babies home, who lost them or are still waiting for repairs/transplants. We have to wait for the blood work results from today's visit, it will be about 10 days for all of it. The doctor is hopeful that he has improved since he did get through his fever hospitalization in December so quickly. We certainly hope so too!
We are beyond lucky and grateful for this little boy, because he definitely isn't a baby anymore at 24.6 lbs, who standing is past my knees and today said Bye for the first time! I couldn't have imaginied at this point last year being so damn happy, but we are..and we love this journey.
Friday, December 31, 2010
Shove Off 2010
I think its a classic case of a love hate relationship. That's right, 2010, I'm talking about you.
Love- seeing so many firsts with Liam, doing the typical baby stuff from talking, eating, laughing, goofing around, you name it, we had so many. Making new friends who understood our concerns, who've been throught it- we love you and your beautiful kids. The supportive family and friends who called, emailed, visited both in the hospital or at home, you gave us strength we didn't know we needed. I love that my relationship with my parents and sister and brother have changed to this amazing level. (Yes, we are moving out soon I promise.) The prayers of those we didn't even know that extended to thousands around the world, with messages of hope and love. You have made us feel touched by God Himself, you saved our baby. Its given us a new passion, a way to spread more love and awareness. I love that I've been given an insight into a part of this world I would never have known about without Liam- parents of not typically healthy kids. As a wonderful micro premie Mom shared with me, this is an exclusive club no one wanted to be in but we are. My love for Children's Hospital of Philadelphia is a deep one, we will never forget the names, faces, the helicopter pilot, doctors, surgeons, the moments that truly give us hope. We still need them as we continue to recover and we will do what we can to help CHOP do this for so many other families.
Hate- I will never get an answer to so many questions, like the one we asked a million times as a kid- why? I've confessed to every sin, I did my penance, I consider myself a decent person and I can't stop blaming myself for my son's health. I hate myself somtimes, was it that stupid chicken nugget I craved at 34 weeks pregnant that gave him two major diagnoses? No, then what the hell? Don't give my son the penance for the way I've led my life is how I think when I am honest with myself. I hate the anger I still have and that I know my prenatal care team can never have a finger pointed at them for all the mistakes they made. No other parent should have to have their life turned upside down. Probably the most important thing I've learned is who my true family and friends really are, and I hate that I lost so many people I thought were supposed to care about me the way that I cared about them. This was a rough way and rough time to learn what love really is but life is certainly short and I'm not wasting my time on them anymore. To shun my son because of Down Syndrome or use the word retarded, to not call and ask if he is ok, or email or text, or something and to say you're a friend, a family member, that's something I cannot forgive. And I hated that I had to pretend to be ok with what was happening, be strong and shut up, not my strong trait. I could not scream, cry, hit, curse something and just get it out. The Diary of a Mad White Mother is something I could have played the lead in. However, I did love that I slightly transcended into Ally McBeal and imagined myself doing this during specific moments during the last year.
I could go on, in both categories, for quite a while but I'll spare you my ranting and raving. Alex on the other hand, say a prayer for him, he gets to hear the majority of it. Every year will have ups and downs. This year had a few more downs than imagined but the biggest up is napping right now after playing outside in the snow for the first time today and loving it. That up loved opening up presents and ripping the wrapping paper. And that up, he is just the joy in my heart and life, and ultimately, I'm humbled for this gift.
A prayer of health, happiness and joy in 2011 to all- thank you for being our miracles this last year. We would be nowhere without you. Liam waves hi and gives big kisses with a little bite at the end to you :o)
Love- seeing so many firsts with Liam, doing the typical baby stuff from talking, eating, laughing, goofing around, you name it, we had so many. Making new friends who understood our concerns, who've been throught it- we love you and your beautiful kids. The supportive family and friends who called, emailed, visited both in the hospital or at home, you gave us strength we didn't know we needed. I love that my relationship with my parents and sister and brother have changed to this amazing level. (Yes, we are moving out soon I promise.) The prayers of those we didn't even know that extended to thousands around the world, with messages of hope and love. You have made us feel touched by God Himself, you saved our baby. Its given us a new passion, a way to spread more love and awareness. I love that I've been given an insight into a part of this world I would never have known about without Liam- parents of not typically healthy kids. As a wonderful micro premie Mom shared with me, this is an exclusive club no one wanted to be in but we are. My love for Children's Hospital of Philadelphia is a deep one, we will never forget the names, faces, the helicopter pilot, doctors, surgeons, the moments that truly give us hope. We still need them as we continue to recover and we will do what we can to help CHOP do this for so many other families.
Hate- I will never get an answer to so many questions, like the one we asked a million times as a kid- why? I've confessed to every sin, I did my penance, I consider myself a decent person and I can't stop blaming myself for my son's health. I hate myself somtimes, was it that stupid chicken nugget I craved at 34 weeks pregnant that gave him two major diagnoses? No, then what the hell? Don't give my son the penance for the way I've led my life is how I think when I am honest with myself. I hate the anger I still have and that I know my prenatal care team can never have a finger pointed at them for all the mistakes they made. No other parent should have to have their life turned upside down. Probably the most important thing I've learned is who my true family and friends really are, and I hate that I lost so many people I thought were supposed to care about me the way that I cared about them. This was a rough way and rough time to learn what love really is but life is certainly short and I'm not wasting my time on them anymore. To shun my son because of Down Syndrome or use the word retarded, to not call and ask if he is ok, or email or text, or something and to say you're a friend, a family member, that's something I cannot forgive. And I hated that I had to pretend to be ok with what was happening, be strong and shut up, not my strong trait. I could not scream, cry, hit, curse something and just get it out. The Diary of a Mad White Mother is something I could have played the lead in. However, I did love that I slightly transcended into Ally McBeal and imagined myself doing this during specific moments during the last year.
I could go on, in both categories, for quite a while but I'll spare you my ranting and raving. Alex on the other hand, say a prayer for him, he gets to hear the majority of it. Every year will have ups and downs. This year had a few more downs than imagined but the biggest up is napping right now after playing outside in the snow for the first time today and loving it. That up loved opening up presents and ripping the wrapping paper. And that up, he is just the joy in my heart and life, and ultimately, I'm humbled for this gift.
A prayer of health, happiness and joy in 2011 to all- thank you for being our miracles this last year. We would be nowhere without you. Liam waves hi and gives big kisses with a little bite at the end to you :o)
Monday, December 27, 2010
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!!
Monday, December 13, 2010
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
http://giving.chop.edu/site/Survey?ACTION_REQUIRED=URI_ACTION_USER_REQUESTS&SURVEY_ID=3041
Tuesday, November 23, 2010
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
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
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.
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