You are currently browsing the monthly archive for January 2009.
January has felt like a chance to take a breath and regroup. There have been no trips to Cincinnati and while those only took up a week out of each month, in terms of stress and worry they seemed to swamp every month. So while we are still processing what we found out in December, it has still been, for me, a chance to get my feet under me again.
We got some more test results back this week, his vitamin levels all came in good except for his vitamin D, which was quite low. The one and only job of vitamin D is to help our intestines absorb calcium. So it goes hand in hand, I’m assuming, with the fact that his bone density is low–the actual numbers they are reworking considering his bone age scan. We got the results of the bone age scan back this week as well and his bone age is 14, rather than the 18 and 8 months he was at the time. We’ll be going over what that means in terms of treatment when we go back next month.
Which brings us around to February, we’ll be heading back to Cincinnati the third week of February (it’s always the third week as that is the only week of each month that Dr. Harris is in Cincinnati). We’ll be leaving on Sunday the 15th as we need to be in the surgery area at 6:15am on Monday the 16th. They’ll be fixing his feeding tube hole that morning (finally, after 12 years of leaking and driving Michael insane). I know that we need to do it, that it is something we CAN do versus all the things we can’t do anything about–but I’m starting to get a knot in my stomach about it. Anyway, he’ll spend the night and will be able to leave the next morning (Tuesday) as long as he is eating and drinking fine. Before we leave the hospital we’ll be seeing Dr. Crawford (the orthopedic surgeon) to go over surgery options. They put Michael’s case before a conference of orthopedic surgeons and pulmonologists and they called this morning to say they would like to sit down and discuss options (and the knot grows larger). On Wednesday we’ll meet with Dr. Harris as he wants to see him every 3 months and that will be three months since we’ve seen him, and I’m assuming we’ll discuss the bone age, density, vit. D and such.
Before then I want to sit down with his local pulmonolgist (who referred us to Cincinnati last spring) and really go over everything we have done in the last five months and get his input on where we stand, where we go, and etc. He has seen both his pediatrician and one of the pulmonologists in the last month, but they were not very helpful appointments so I feel a sit down conference is needed.
So, there we are, the official “where we stand”.
