10/16/04

This past week we've been busy with trying to get all the equipment we need. Cass is adjusting well to being home and so are the rest of us. He sleeps pretty well and seems to sleep through being suctioned most of the time. He gets upset easily though when he's moved around too much. He loves to be held and falls to sleep easily in your arms. His temperature regulator in his brain doesn't seem to function well because one minute he's sweating profusely and then the next minute he's cold. His temp is all over.
Yesterday was his first check up at his pediatrician since his homecoming last week. He lost 1/2 an ounce this week which is surprising since he's on 21 hour feeds. So, his feeds were increased from 35 ml hour to 37 ml hour and calorie intake increased. He seems to be tolerating it well. He still vomits at least once a day and it usually occurs around 7 am. We decided to elevate his head even more to a 45 degree angle. Maybe it'll help the acid drain better out of the G tube.
We also heard back from the Genetics Specialist from Children's Hospital in Seattle. The initial chromosome test said that everything was normal, but something just didn't sit right with her so she ordered a retest. It turns out he has all 46 chromosome XY. Normally we all have 2 of each chromosome 1-22. Cass has all that, but further exploration of his chromosome showed that his #4 chromosome was where the problem was. One chain of his 4th chromosome was normal, but the other had a band missing. It's called deletion 4q34.2 or qter and it occurs during embryonic development for no apparent reason. Some symptoms are mental retardation, unusual facial and cranial malformations, heart defects as well as limb deformities. How severe his symptoms are, we're not sure but the doctor believes he may have a milder case. The problem is that there isn't a whole lot of literature on this topic because it is rare. We don't really have an exact guide to what to expect because there isn't any literature on his exact case. We'll meet with the genetics specialist in the beginning of November and we'll have more information by then, hopefully. He just seems to be so alert it's hard to believe that he may have some mental development issues. If anyone knows anything about this topic it would be greatly appreciated. All I have is what I've read on the internet. It's good to have a reason to why he's having so many problems so we can work with it. For the most part we are in good spirits and are prayerful that all will work out for the best. It's in the Lord's hands and we trust fully in Him. Thank you for all of your continued prayers and thoughts. We are truly blessed!