Liam’s Story

Story submitted by Liam’s mother, Yvett:)

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Liam at birth

So where to start….

We did not know about Liam’s Hydrocephalus until week 32 because nothing was showing on ultrasound until that point.When it was discovered, we had to see some more doctors and plan how to go from there. It took just 2 weeks, from that day, until our son was born via c- section.

He was born on March 26, 2015 at 8: 48 AM. He weighed 2490 kg  and was 49 cm tall. His head was very large when he was born. Doctors measured his head to be 42 cm around, which is very large and made him weak.

Since he was 5 weeks premature, his lungs were not working as well as they should so he needed some extra help breathing. He got a shunt placed in when he was just a few hours old which worked well from the start. But since he got a small infection when he was 3 days old and this lungs were not totally developed- he needed to be placed in a respirator with extra oxygen and nitrogen to help boost his lungs. This help was only needed for a few days but he would be needing extra oxygen for 1-2 month after that since he was premature.

Liam was born at Lunds hospital in Skåne, Sweden.  We stayed there for 1.5 weeks until they finally moved us to a hospital just 20 minutes from home. At that time, he was disconnected from everything except his oxygen which he would need a few weeks more.When we had been moved to Helsingborg, we had our own room, and since someone infected him with a harmless bacteria we had to be on lockdown which was a pain since we were not allowed to exit our room. The bacteria was harmless to other children and adults but for a 700 gram baby it could be worse. And since we were still placed in neonatal care just as we were in Lund, but not in ICU. We stayed in Helsingborg for almost 1.5 weeks  and were allowed to go home since he was doing well. Although, he was still on oxygen. But here in Sweden, I could get homecare and even oxygen. So when we got home, we had 14 small tanks of oxygen waiting for us.

At that  point i had never felt more relaxed. To finally be home with my first child felt amazing.  Liam was doing well except for a small wound on his neck where they had to open when placing his shunt. We got some antibiotics for it,but after being home for just 7 days, I noticed that it was still not healed.I convinced myself I was seeing his tube through the wound. Unfortunate  for us all, I was correct. The next day,we were (yet again!) placed in hospital care. Since they did not want to take any chances, they removed Liam’s perfectly working shunt.  We were hospitalized for 7 more days before he got a new shunt placed- this time on the other side of his head. During that 1.5 weeks, his head grew 1 -2 cm more since there was no shunt to help with circulation. The same night they replaced the shunt they had some issues getting Liam to wake up. His blood work was not good. He ended up having a blood transfusion which helped and he also got his feeding tube back for 2 days just so he could get some help.

When we finally got to go home for the 2nd time, we were relieved. Liam was doing well and have been doing so since that day. We have change shunt settings 1 or 2 times after that and now his head is barely growing. Sure, his head is almost as big a a 2 year old’s and much pointier but i think it suits him. He is Mr. Charming and everyone who meets him can’t help but love him!

The past year we have noticed that he has had some major delay in his motor functions. It took him until he was,at least, 6-7 month old before he could hold his head by himself. And it was not until just recently that he learned how to sit alone stably on the floor. I believe he was about 14 month old when he finally learned. Sure he could sit before then but he just didn’t want to. HE wanted to stand up aLl the time- using a table to lean against, etc.

I have heard that many children with Hydro. have had issues with motor function and we also did a CT scan, not long ago,  that showed that he had some delays in the front part of his brain were motor skills are located and also vision. We have also noticed him not seeing as well as a child i his age should, but that is something we are training with eye patch and are also having regular visits to the hospital to check that out. At the moment,we are  waiting for an appointment to do a MRI so we get a clear understanding on how his brain looks and if there is anything wrong.

Liam was also born with  a cardiac murmur on his heart. Nothing serious but also something we are having checked once a year.

Liam’s progress has been going slowly the past month. His eyesight has improved a lot and so has his balance especially sitting. But his balance standing is something totally different. Four months ago he got a different walking-chair from rehab which has helped a lot, and now he can run with it and open everything indoors. But he walks with both feet at the same time and without it he doesn’t  want to take 1 step at a time so we have to show him  the right way of walking and train his balance.  In 3 weeks, we will be swimming with him- 1 day a week for almost 3 month which is awesome because now we can start building his muscles. Sure he is a very strong little boy, but since he is 82 cm tall and weigh about 10kg he doesn’t seem to get a chance to learn to keep his balance since he is growing so fast (he grew 2 cm in 1.5 months).

Liam have had a very traumatic beginning in his life and since he was very ill in the beginning we can’t say he got a chance to be a baby until he was at least 5 month old. From our perspective it feels like he is almost 8-10 month behind in his motor skills. But in some parts of development he is just like anyone else. He wants to be able to sit up by himself and run.

 

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A reminder with profanity thrown in:)

After weeks of not wanting to get out of bed because my head feels like it weighs a million pounds and my body feels like I’m stuck in quick-sand, I got out today. Thank goodness for small miracles because I’ve been battling the voices in my head that say “You should be doing more!” As a 31 year old who still lives at home with my two very amazing parents, I have felt that I’m falling behind in life. This idea gets compounded with having a chronic illness. I was pondering this very thought a few days ago when I came upon a write-up in the Huffington Post (see URL). I spare you the synopsis of the article and you can read it if you wish, but the take home message to me was:

” You can’t just conjure up motivation when you don’t have it. Sometimes you’re going through something. Sometimes life has happened. Life! Remember life? Yeah, it teaches you things and sometimes makes you go the long way around for your biggest lessons.”

That’s what made today so great. I think when I stopped putting pressure on myself and beat down the little voice inside my head telling me that what I was doing wasn’t enough, I got to enjoy what I did. I hung out with 3 very sweet ladies and 2 wonderful kids and it may have not been for hours but the time spent was genuinely freeing from the constant pain that is present in my daily existence . I know many of us tend to put pressure on ourselves to get out there and persevere, which I think is good; however, when we start beating up on yourselves to be like our well counterparts- it only hurts us more.  Today’s message: Be kind to yourself since you’re body is already fighting against you!

 

Article URL-  http://.huffingtonpost.com/jamie-varon/to-anyone-who-thinks-theyre-falling-behind_b_9190758.html

*Still getting used to WordPress so I’m still figuring out how to insert a link. For now copy and paste link  to your browser!*