Liam had a Doctors followup from his hospital stays today. From Liam being released to today he hasnt gained any weight :( Hes getting a ton of callories a day and should be gaining pleanty but isnt. Hes going to be tested for Cystic Fibrosis because its the only other thing the doctor can think of that would cause this. Ofcourse the newborn screaning test said he was negative but it could have been wrong. So the doc is ordering a sweat test because its more accurate than blood. Liams failure to gain weight is either caused by CF or complications from surgery that would just have to go away on its own. For now this is all we can do. We have to figure out why his body isnt using the callories, if hes just not obsorbing them or what not. It could just be something that he's going to have for awhile and all we can do is continue to pump the callories into him. If he goes another 2 weeks without any weight gain or very little weight gain were going to have to do something fast. Maybe theyll go ahead and use the stuff they use for premies that makes them gain weight fast, they havent exactly told us anymore options than the additive. I will do just about anything at this point.
Liam is so far behind right now. Lanie was 5 months old when she learned to sit on her own, she started crawling around the same time. At 8 months old she was walking and running. Liam hasnt accomplished sitting on his own even for a short period of time. He barely learned to roll over and he still gets stuck. Liam puts weight on his legs, but not like he did before all these hospital stays. He cant hold himself up using things like the couch if proped there anymore. All the progess that was made in his physical therapy was lost during these last 2 hospital stays. I wish we could get him physical therapy more than once a week for 30 minutes because he needs it bad.
Justin has finnaly reached the point where he feels resentful that other families have their healthy babies. Ive been there off and on since Liams birth. Its not resentment directed towards others that have these healthy wonderful babies, its resentment just that our baby isnt. These feelings dont help anyone though and we realize that, but its hard not to feel that way. We can still plast on that smile and "be happy" for everyone else. Truth be told, I am happy for everyone who has healthy babies, I wouldnt wish this on any little ones, but my smile isnt usually real. It wouldnt be fair to tear up or get emotional. No matter how hard I wish that Ill wake up to the last 8 months being a dream and Liam will be healthy, its not going to happen. Well maybe when he's 18 months he will be "healthy". I had so many goals for him to reach by the time he turned 1. I wanted him completly tube free but now were even more dependant on the tube than weve ever been. I wanted Liam to be able to crawl and sit on his own. I wanted him to baby gabb more, be able to say "mana" on top of his already learned "dada" and maybe a few other words. Now Liam has regressed and doesnt even say "dada". He screams and says "eeeee" but nothing that even remotly sounds like baby jabber or talking. Our deffinition of healthy has changed many times over the last 8 months. Currently just having him home means he's "healthy" whatever other problems arise. Liams lungs will always be a problem, atleast until we can get that high right side diaphragm fixed but that doesnt even guarantee that anything will change. We do however know that his right side rib cage is deformed, something we just recently realized. The right side is higher than the left and jets out more than the right. It actually looks like he has a big knott in the front of the right side righ cage. This was something that just wasnt confirmed to us previously but became very noticable when Liam had lost all that weight. This doesnt effect anything, its just the way his ribs grew.
Our goal is for Liam to not have another hospital stay until after Easter. We know that with the way things have been going it seems in unrealistic goal, but I feel that sometimes you just need to be optimistic and shoot for the stars. Please send up a prayer, light a candle, send positive vibes, whatever you do, that we can try to complete this goal.
We were watching TLC amd theyre advertising that you can tweet @mytlclife and if they life your tweet they will put ot one tv. Im trying to get as many people as possible to tweet about CDH and asking them to do a segment on CDH in hopes that they will. It would be awesome and reach so many people if we could get them to do this. If you find yourself with some time on your hands please tweet @mytlclife about somethiing CDH related. The more tweets the better change we could get them to do something to help spread the awareness. Also if you tweet my username is truliefree, Liams is cherubliam if you wanted to follow us.
For Liams 1st birthday, I want to do a balloon release. Since people live all over the US and some out of the US I think this would be a great way to celebrate Liam making it to his 1st birthday. So on July 14th, time to be announced, if you would like to help celebrate just release a balloon. Take pictures of your balloon release and email it to me for Liams scrapbook.
cherubliam@yahoo.com
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