Last week was so hectic, I apologize for not updating. Aidan had 4 doctors appointments last week. We met with the rehab doctor for a follow-up. He's very limber everywhere except his ankles. He still wants to drop his feet even with wearing the splints (AFO's). We're scheduled to go back in April, a year exactly from the day he came home. We're supposed to continue stretching him and putting him in the stander up to an hour 2x a day. If we can't get his ankles to relax, we'll be doing a botox injection at that visit. I'd rather not have to do the botox, personally. His ankles are better than they were, but they still need some work.
Wednesday, we met with the ENT again to discuss putting tubes in Aidan's ears. Every time he gets an ear infection we have to stop his hyperbaric treatments for a week. He's had 3 ear infections since we started this and before that he'd only had 2 in almost 2 years. So we are scheduled to go in for that surgery on Halloween morning. It will be a quick out-patient procedure. And we can start back with the hyperbaric treatments right away. This will equalize the pressure in his ears without him having to swallow or whatever.
Thursday was our appointments with the neurologist and the endocrinologist. Our neuro said that he's very pleased with how Aidan is doing. Aidan was even trying to follow him with his eyes. We're starting to decrease his valium which is great. I'm hoping that by doing this we'll start to see more voluntary movements and a more alert little boy. He had been on 34mg of valium a day and we're going to try to work down to 20mg per day. He's on enough valium to knock out a normal adult and then some. It'll take us about 7 or 8 weeks to get him weaned down that low. We have to do it slowly so he doesn't go into DTs. I hate to say it but my baby is a drug addict. He's been on so much medication for so long.
As for the endo, she did some bloodwork and asked a lot of questions about family history. She said that if Aidan's weight gain is related to the hypothalamic injury, then there really isn't anything you can do to treat it. However, she thinks that most of his growth is just due to his normal growth. She said that around the age of 2 is when most kids start showing their growth pattern. We'll just have to wait and see what his blood work says. We have a follow-up in December to see how he's doing and talk with the nutritionist again.
So, last week was pretty busy. It was a lot of info to take in. Friday morning I woke up and couldn't even walk. My left knee completely gave out on me and I couldn't bear any weight on it. It was horrible. I couldn't pick up either of the boys, so Russ had to work from home so he could help me out once the nurse left. I went to the doctor and they did an x-ray, but it only showed that I have arthritis. My doctor said it was bursitis and gave me a script for an anti-inflammatory and some pain pills. The next day it was better, go figure. It was the weirdest thing. I've never had something like that happen to me. I knew that I was starting to get arthritis, but it doesn't bother my knees too badly. Anyway....
That's what has been going on. We had a pretty uneventful weekend. I've been trying to clean out the boys old clothes that they've both outgrown. I never would have thought that we had so many boxes of clothes! I never really got rid of anything when I found out that Evan was on the way. Now it's time to get rid of what Evan has outgrown, and I can actually really get rid of it. I'm going to try to list all of the baby stuff on craigslist in the next few weeks, but it's a lot of work, especially when I need to be getting ready to move.
We're moving into the apartment on November 1. We're pretty excited about it. We've gotten just about everything we need. I'm still looking for a dining table and chairs though. Russell's mom is flying out for Thanksgiving, so we're looking forward to that too. It will be good for her to spend time with the boys. They haven't seen her since April. I hate that we're so far away now, and I hated that we were so far away from my family when we were there in OK.
Oh, well. I guess I should go. Evan is into anything and everything he can get his hands on. He's just like Aidan was at this age. I hope that everyone is doing well.
Thanks for the continued prayers and support. We love you all!