And, the cast did, in fact, come off. He did well during the surgery and his recovery has been slow but steady. In less than a month following cast removal, he was sitting up. Just this week he has started crawling and pulling up to stand. I just stare in amazement. He started crawling a year to the date of his NICU discharge.
There are a ton of other things going on with Clark, and I will try my best to make it short and simple. First off, he has had lots of trouble lately not gaining weight. He hasn't gained any weight since October. This is really bad, considering how young he is. He's 14 1/2 months old and can still wear 0-3 month clothing. His doctors are very much in favor of installing a feeding tube. We are not. We have a week left to fatten him up and show them that we can do it. It doesn't help matters at all that he refuses to drink any type of milk. The good news is that he has gained at least 10oz in the past week, the bad news is that we have to park him in his highchair literally all day long and feed him.
Another problem we're facing is his teeth. They're coming in yellow and we've been told it's because of the large doses of antibiotics he received in the NICU. That means that his teeth are fragile and much more susceptible to decay than normal baby teeth. We have an appointment with a dentist within the next couple weeks to figure out a plan of action.
Clark had the flu in February and was very sick for a week. He drank nothing but clear gatorade and pedialyte during that and lost an entire pound. His lungs also suffered and he's now on daily inhalers so he can breathe well. It's likely that his diminished lung function doesn't help his slow weight gain.
His vision is still very bad. We got him glasses, but he would rather play with them than leave them on so they really don't benefit him at all even though he can definitely see better with them on. He has an MRI scheduled for next week so they can look more closely at his optic nerve issue and possibly diagnose a syndrome that is associated with that (he has been given a preliminary diagnosis of DeMorsier syndrome.) Basically DeMorsier would explain his optic nerve hypoplasia. They will also look at his nasal passages and sinuses during the MRI, his pulmonologist suspects that he has some type of deviation in his nasal airway because he can't breathe through his left nostril.
Whew. Well, I think I covered it all. As much as our situation has improved in the last year, things are still pretty stressful in regards to Clark's health. He's really blossomed in the past several months now, he says many words and his first word was "Bible". He has a little Bible and he barely lets go of it and really gets upset if someone takes it away. I hope that's a good sign of things to come. He's a little guy who knows exactly what he wants and will tell someone if things aren't going his way. I feel truly blessed that he is my baby and that we have him here with us.
Please pray for Clark's weight gain and also for his MRI next week, as he will have to be sedated. We appreciate it so much.
