Wednesday, June 28, 2006

Good news, good news and more good news...
It has been a very busy week. On Monday, the physical therapist came over to evaluate Sophie (our parent educator referred us to the Missouri First Steps program which helps children from birth - 3 years). The therapist said that Sophie would not qualify for the program because she is not lacking more than 50% in development. Yeah - good news!!! But, Sophie is still able to participate in the program because of her seizure disorder.

On Monday afternoon, I took Sophie to see her pediatrician. Over the weekend, Sophie was sooooo crabby and whined all day long. On Monday morning, I noticed she was scratching at her ear a lot so I thought she might have an ear infection. When her pediatrician examined her, her ears, nose and throat all looked great. She said Sophie was teething and sometimes when the tooth is coming in it hits a nerve causing a shooting pain from your mouth up to your ear. So we gave her tylenol and she has been fine ever since. Yeah - good news!!!

Today, we took Sophie to see the neurologist for another EEG. The results showed that Sophie no longer had hypsarrhythmia (chaotic brain activity)!!! Yeah - GREAT NEWS!!! Her EEG is still slightly abnormal, though. She no longer has areas of suppression but still shows areas of drowsiness. Her background rhythm occasionally is a 5 or 6 but not as much as her neuro would like to see. Also, her left and right side of the brain is working together a lot better. With this information, the neurologist decided not to switch to prednisone. We are going to keep her on ACTH but start the weaning process (60 units for 4 days, 40 units for 5 days, 20 units for 5 days, and 20 units every other day for 10 days). This weaning process is very important. If Sophie's seizure activity does not increase and if her brain activity keeps normalizing during the weaning process, then it means her body does not need the steroid to stay this way. So now we wait and pray that she does okay with the weaning process.

By the way, Sophie had a wonderful day today. Usually, the EEG wears her out, but today she was so incredibly happy and vocal. We met with the doctor after the EEG and she kept making these long, drawn out yelling noises. Brandon said she sounded like one of those flying dinosaurs (teradactyl???). It was hilarious. She kept smiling at the doctor and just wanted to explore his whole office. Actually, she was in an exploratory mood the entire day. She sat up so well and was reaching for all her toys around her. She is really starting to stretch those arms and look beyond than what is just in front of her. Today is the best day she has ever had!!! My heart is filled with so much joy and hope right now!!!

3 comments:

great aunt barb said...

Well, this is a great way to start my day!! I had such a good time over the weekend visiting and playing with Sophie. I love that little giggle when she gets going. I'm sure the Dr. was pleased to see her little sunshine personality shining though.

When I give Sara the news, she'll be driving Laura nuts with planning a party and a trip to Great Wolf Lodge for Sophie.

Give Sophie a hug and kiss for all of us here in KC. Hope to see you all again before school starts.

Love,
Barb

Anonymous said...

I am so thrilled to hear of Sophie's progress! What great news! That she's sitting alone and reaching for toys is super!
I will be thinking of you during the weaning process...perhaps she'll be drug-free by the time I see you in August.
Good that you followed up with the ear check, you are super observers of her behaviors. Glad there was no infection.
Give Sophie a hug from Miss Denise. I'm glad to be able to read about her progress on the blog.
Take care. Miss Denise

Anonymous said...

I am SO glad to hear all the great news! I learned from Brandon last week that Sophie has been making great progresses lately; looks like there are just more and more positive changes coming! Keep up good work! As always, my very best wishes.

Vivian Liu