Thursday, July 24, 2008

The appointment with the Neurologist.....

Well, we finally had the appointment with the neurologist and everything went really well. My stepmother, Doris, came to the appointment with us which was a blessing in itsself. Without her, I would have gone crazy after the 1 hour and 20 minutes in the waiting room before getting called back. Kendal was as amazing as usual. She was great the entire time and thoroughly enjoyed checking out all the new people that were coming into the office. She was even trying to kiss a little boy and girl in the waiting room that she was playing with.

The wait was worth it though because this doctor was actually pretty familiar with Angelman Syndrome. We discussed seizures, but since Kendal has not had even as of yet he just went over the different types that they usually have and what they look like. He said about 80% of the kids with AS have seizures.

He was really understanding about the sleep problems that Kendal has. She is currently taking Melatonin (1.5ml) before bedtime, and it usually eases her into sleep. It has been wonderful but we are still having periods of her being up throughout the night. He told us to double the dosage and that I could even go up to 6ml/24 hour period. If that didn't work, he said that he would probably put her on a prescription medication to help. This was so nice to hear. I am used to doctors telling me that she's just going through a phase and that nothing is really wrong with her. Now, I go to a doctor that tells me this is VERY common for kids with AS and that he will help me with the problem. What a relief!!!

We won't have to see him again for a year unless something changes. We have an EEG scheduled in August and that will complete everything the neurologist needed at this time. Now if we could just get the next results on the genetic testing to determine if a gene mutation caused this diagnosis.

Tuesday evening Kendal saw Donetta. She put one shoe on Kendal's foot, and asked Kendal to find the match (it was clustered with several other pairs of shoes), and she found the match correctly both times. I was so happy and surprised. I had not wondered if she had this skill as it had just never come up in our daily life and I was pleasantly surprised that she had no problem doing this - and doing it all on her own!!

Wednesday morning we were back on schedule with Speech Therapy. Kendal again did great. Suzanne taught her the "choo-choo" and "go" sign and Kendal copied them both - and these are not easy!!! So next time you see Kendal, be sure to ask her to do these signs. She has been soaking it all in and now she is really beginning to spit it all out.

This morning was Physical Therapy and again all was well. Amber works Kendal so hard but does it so skillfully. Kendal doesn't even realize it because Amber makes everything so fun. She worked on jumping and extending her upper body. It's funny to watch Kendal do all these things because not to long ago, she couldn't hardly do anything. I first took her to Amber when she was only 13 months - now she's my little girl, not my little baby anymore.

Tomorrow morning at 6:30am she has Occupational Therapy (I dread this early appointment all week, every week). After that, we will be done until the following Monday. I love the weekends!!

Tomorrow is also the last day that Kendal will be with Teresa (our beloved friend and babysitter). It is very upsetting in the fact that I won't see her everyday, and that Kendal won't be totally spoiled by her, but I know this is a good thing for Kendal and her continued growth. I will be posting some pictures of her last day with Teresa over the weekend.

It's late - time to go to bed.....

2 comments:

Shirley said...

That's really great about Kendal picking out the correct shoe. I don't know that many kids her age would be able to understand and do that on the first try! I always knew she was smart.

Each new phase (like moving on from a baby sitter to preschool) is always sad and yet exciting at the same time. The sad truth is that it will probably be much harder on mommy then it will on Kendal :)

Anonymous said...

Kerrie, I am so glad to hear that things are going so well! I know the help with her sleeping is such a relief. Isn't it such a blessing to finally find dr's that understand and that can HELP!? God is good:) Lots of happy thoughts and prayers for you guys!

Love ya,
Rhonda

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