Tuesday, August 5, 2008

It's August Already???







I can't keep up with the months anymore. They are flying by this year! Not much has gone on this last week. James had this past weekend off so we spent time around the house hanging out with Kendal. Saturday was nice and we went outside and played with moon sand and finger paints. I tried not to freak out about the mess and just enjoy it. I know Kendal loved it.

Dr. Barnes (neurologist) has advised to go ahead and get Kendal in a sleep study. He indicated that it is normal for kids with Angelman Syndrome to go through phases of good sleeping and bad sleeping. They have scheduled her an appointment for the first week in September. I really dread doing it but I know next time she has another bad sleeping phase I will have wished that I did the sleep study.

I had to pick up Kendal from daycare today and take to the doctor due to fever and a possible ear infection. They stated it was probably just a viral infection going around and they prescribed a steroid to help clear up the inflamed throat. Nana will be watching her tomorrow (thank you!) which is both good and bad. Good in the fact that Kendal will get to spend time with Nana. Bad in the fact that Nana spoils her to death and she probably won't want to come home with me.

I called the geneticists today to try to get an update on the latest tests to determine if Kendal has a mutation of a gene on the 15th chromosome which would be the cause of her AS. I'm sure the people hate me in the doctors office (it has been 4 weeks since they were to run the test and I still haven't heard a word), but I have learned to be extremely persistent about things especially when it comes to Kendal. We have to fight for what we think is best for our kids. I think that God has literally suited me up with battle armor sometimes because I feel like I sometimes have to go to battle to get things handled correctly. It is just the price we are willing to pay for our children.

I've included some pictures of Physical Therapy from this past week. Kendal, as usual, had a ball.

Hopefully in the next couple of days I will have a video link of what Kendal is working on in Speech Therapy. Stay Tuned!

2 comments:

Shirley said...

How much fun is that!?! I want to go to therapy myself! She looks like she's having a blast!

Anonymous said...

I agree with Shirley..I think I could some of that therapy myself...Kendal looks like she is having a wonderful time! Kerrie, just get used to the time flyin' by thing...it seems the older I get the faster time goes..our time here is much shorter than we think. You are doing an excellent job taking care of Kendal. Who cares what the drs office thinks? She's your daughter and you do what you have to do to take care of her and don't worry about what others may think of your persistance:) I for one think Kendal and James are very blessed to have you in their lives:)
Rhonda

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