Thursday, September 15, 2011

medical update-

Plugging along - that's how I would describe these last several weeks - just plugging along. Camilla has started 1st grade and although there was a little bit of a bumpy transition (just in routine, seizures, rest, stress) things are really good and Camilla still loves to go to school each day. She is in a self-contained classroom for a large portion of the day but still goes to lunch, break and other activities with her class. Although we have not seen very much progress in her ability to focus, absorb information or communicate since the surgery, we are seeing GREAT progress since she has started school. Her teacher called the other day to say that Camilla had gone to the chalkboard, looked at her and said 'C' and then promptly wrote a 'C' on the board. HUGE PROGRESS! She has written the 'C' for me several times at home but I can't get her to say it. Camilla loves to swing, at school they make her say 'hi' before they will push her (this was a word that she already used and they are using it to make her communicate) and after following their lead she uses it regularly for us at home. Also, Camilla is making great strides in potty training. They are sticking to a schedule at school of pottying and she is continuing it at home. We have had several days where she has not wet a pull up and today I caught her in the bathroom, jeans down, pull up off and she was tting in the potty all by herself!

While these are great achievements for Camilla we are struggling with some other challenges regarding her development. After an intense summer of speech therapy we received her final report which put her overall communication skills at age 11 months (she's 6). Words can never describe how heartbreaking it is to see this in writing when it's reffering to your child. As long as it's not in writing or I don't have to say it - it's easy to be strong. When I see it in writing - I just try not to cry. It seems like I've been hit with a lot of that lately - whether it's a skills assesment at the pediatrician, the survey at speech therapy or all of the 'back to school' paperwork that forces you to realize your situation. And let's not forget the constant battle of avoiding all children Camilla's age - once this summer I was cornered while 3 little (adorable) girls exactly her age sang, danced and 'performed' parts of a play for me and since we were backstage while the play was going on - it was really difficult to escape all the while trying not to hurt their feelings - uuuugggghhhh! And last but not least let's not forget the telephone survey from the 'something or other to do with vaccinations' center. Well they only wanted to know about kids 12 mo to 4 years so I had to answer based on Crosby but with our experience with vaccines I was curious what the questions might be. The third one was 'has your child ever had a seizure or been diagnosed with any form of epilepsy?' From there they went on to ask all kinds of developmental questions I just grew sadder and sadder with each passing one, knowing that were they asking about Camilla my answers would be entirely different.

As for seizures, we are in a relatively good week and we are only seeing 2-5 each day. They are definitely different from before, she will freeze what she's doing and her left arm will stretch out and her head leans slightly to the left. She holds this position for several seconds and may or may not shake during this time. She seems to be only minimally disturbed following each one. Since sugery she was seizure free for 5 weeks, then had a really horrible several weeks of 15-20 per day and now we float back and forth between good (like now)and bad weeks (5-10 per day).

Camilla is set to return to Children's October 10-14 for a 96 hr EEG, PET scan, SPECT scan, MRI, lumbar puncture (redoing her genetic testing) all to see if they can locate a focal point(s) in the right hemisphere and determine if she is a candidate for ressection surgery. Please help us pray during this time, we are gathering more information and trying to decide whether to follow through with this testing at this time or postphone it for awhile. We are praying for wisdom and direction.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11