October 7, 2008
We’ve had a busy last few weeks. Avery went to see an endocrinologist at the end of August. He’s a lot smaller than most kids his age so the doctor wanted to test him for growth hormone deficiencies. She said even though he’s small for his age he’s still growing so he probably doesn’t have a deficiency but we could test him to make sure. The test got cancelled due to the hurricane and we haven’t made it up yet. I know I need to but I dread the fact that it’s a 4 hr test and he can’t have anything to eat or drink starting midnight the night before. It’s the only way we’ll know though so it has to be done.
We also saw the urologist at the end of Auguast as well. It was time for our yearly follow up visit to check Avery’s kidney and see if he still has the reflux. We did some tests a couple of weeks ago and we go back tomorrow to get the results. Avery has spent the last year taking an antibiotic to keep the reflux from giving him a kidney infection. If he still has the reflux and it hasn’t gotten any better he has to have surgery to correct the problem.
Last week we went to see a dermatologist for Avery’s skin. It gets very dry and he has bumps all over his legs. He’s always had them and it’s common for CFC but it really bothers him and he scratches really bad at night. He has scars on the inside of his ankles from all the scratching he’s done. The dermatologist gave me a few different meds to try but wasn’t sure any of them would work.
Friday we went to see a GI doctor about all of Avery’s constipation issues. He was back in the ER on Saturday, Sept 27th. He was constipated so bad he couldn’t even sit up straight. There wasn’t much the ER could do for him so they just gave him an enema. It helped some and he did poop but it was only a temporary fix. The following day he had diarrhea all day and then went Monday to Friday without pooping at all. The doc on Friday took an x-ray of Avery’s belly and said he was constipated again. We would have been right back in the ER in a matter of days. Avery current medication wasn’t really working. If we gave it to him every day he had diarrhea but if we gave it to him every few days he was constipated. We couldn’t find the right dosage to give him a happy medium. The GI doctor changed that medication and said to come back in 3 months unless there was no improvement.
Physical therapy is going really well. Avery’s standing a lot more now….and without the help of his stander. He still has to hold on to something or have some help from someone but we’ll take what we can get. The home page is under construction right now but if you go to www.averysjourney.org Jeremy posted a recent picture of Avery standing while he’s holding on to the couch. His teacher at school told me today they put Avery in his stander for 30 minutes every day. I also put him in there regularly and she said if we keep it up he’ll be standing on his own in no time. Once he does that we get to move from a stander to a gait trainer which will teach him how to walk. I can’t wait for that!!
I hope everyone had a great weekend. Tonight is National Night Out so make sure you get out and visit with your neighbors!