We got Cate's tests results back, and they were okay! Hooray! The problem is, we already were pretty sure she didn't have one of the major mutations that causes CF because she hasn't had any respiratory problems so far. This test was only for the major mutations. There are about 1300 minor mutations that cause CF, and there is not a test that tests for all of them. So, basically, we're in for more testing. This time we have to wait about 2 months to get an appointment with the specialist so he can answer our questions, make a plan, order the tests, etc. So, we wait.
Will saw the developmental pediatrician today. He was very pleased with Will's progress and is now calling Will's disorder Pervasive Developmental Delay (PDD). This is a well-known and established diagnosis and more importantly is paid for by insurance companies! I still think he has Angelman Syndrome. We're going to Arkansas Children's Hospital in Little Rock next month for him to see a neurologist I worked with as a medical student who has a lot more experience with Angelman than the neurologist here in Tulsa. Will is also most likely going to have surgery next month to help with his reflux and his retractile testicles (sorry if that's too graphic). He will stay in the hospital for 3 or 4 days if all goes well.
Please keep us in your thoughts and prayers as we prepare for this.
Sorry!
Sorry for the delay in posting. I was on vacation last week and had a wonderful time in Alabama with my family. No news on Cate yet. I called today, but no one called me back. We're going on 5 weeks since the blood was drawn, and I'm starting to get a little angry! Will may have to have surgery to help with his reflux. We'll no more in a few weeks. Hopefully I'll have some good news to post soon. Until then...
She Gained Weight!
Cate went for her monthly weight check yesterday, and guess what! She gained 13 ounces!!! That is a huge improvement and the most weight she's gained since she was 2 months old. She now weighs 15 pounds 0 ounces. She is still at the 12% for weight, but she didn't fall on the growth chart this time. She's actually about the same spot she was on last month, which means she might have picked a growth curve. Hooray!
Will went to the eye doctor today. We are supposed to wait 3 months and watch his eyes. If the wondering gets worse, we're supposed to call and be seen sooner. If he doesn't get worse we'll see the doctor again in February. At that point, one of two things will happen. If his eyes are the same, he'll have to start wearing glasses. If his eyes are better, we may not have to do anything. That would sure be nice. I can't imagine trying to keep glasses on him. We'd have to duck tape them like they do his shoes at school!
Will went to the eye doctor today. We are supposed to wait 3 months and watch his eyes. If the wondering gets worse, we're supposed to call and be seen sooner. If he doesn't get worse we'll see the doctor again in February. At that point, one of two things will happen. If his eyes are the same, he'll have to start wearing glasses. If his eyes are better, we may not have to do anything. That would sure be nice. I can't imagine trying to keep glasses on him. We'd have to duck tape them like they do his shoes at school!
No News Is Good News?
So, still no word on Cate's test yet. I wish that meant it was good news, but I'm afraid it only means the lab is slow! She was a little sick last night and had her first fever. I think it's just a cold. Jeremiah said he thinks there was a baby in the nursery at church yesterday with a fever.
Will is doing really great. His PT at school recommended that he start wearing orthodics again, so we're starting the process of getting those ordered. I'm sure he won't like them, but she thinks it will give him more stability when he walks. His reflux has started acting up again, which really stinks. He was doing really well for a few months. He also goes back to the eye doctor tomorrow for a follow-up on his "wandering eyes." I'll be sure to post as soon as I get any results back.
Will is doing really great. His PT at school recommended that he start wearing orthodics again, so we're starting the process of getting those ordered. I'm sure he won't like them, but she thinks it will give him more stability when he walks. His reflux has started acting up again, which really stinks. He was doing really well for a few months. He also goes back to the eye doctor tomorrow for a follow-up on his "wandering eyes." I'll be sure to post as soon as I get any results back.
Santa
The kids went to have their pictures taken with Santa this weekend. I was concerned about how Will would do...if he would sit still, if he would smile. I was pretty sure Cate would do well. She did so great with her 6 month pictures last month, that I wasn't worried at all. Turns out Will did great and Cate wouldn't smile to save her life! Will just laughed and smiled. He gave Santa high fives. Cate was either looking at Santa (I don't think she's ever seen a beard before) or crying. I don't think she was afraid of Santa, I just think she wasn't happy. Anyway, here are a few pictures. We should get Cate's results back the end of the week. I'll be sure to post when we do.
