Tomorrow we will head back to Children's again for Camilla's first post-op EEG. This test (for those unfamiliar) measures her brain activity and should give us much insight into what is going on in that pretty little head. We are still seeing seizures everyday and they seem to be slightly increasing in severity and frequency with each passing day. This test should tell us the number of seizures she's having on average each day (seen & unseen), how severe they actually are and what parts of the brain they are originating in. Please pray for safe travel and a positive direction based on the test results also that we get finished quick because we are headed to Alabama Adventure afterwards! Camilla can finally get that head wet!
Our last visit to Dr. Blount was a good one. Her incision looked much better and he said we were all clear - he didn't even schedule a follow-up. I'm kinda going to miss him (at least for a little while)- he's one of the few specialists that doesn't treat you like a patient - he realizes he's dealing with your whole world and he acts likes it!!!
We do continue to see small changes in Camilla: she tells most everyone 'hi' and 'bye' when we meet or leave people and sometimes even over the phone - she is attempting some new words - she will stick her tongue out if you ask her to - her appetite is much less than before surgery - hyperactivity continues to improve each day - she is still sleeping through the night - 'potty' issues and bedwetting are slowly improving - she LOVES books now and isn't quite as destructive to them - she is grinding her teeth again:( - she has developed the horrible habit of biting the skin on her fingertips - she is making strides in assisting with dressing herself - the other night after taking her medicine she went and laid in her bed and fell asleep (this has never happened - we always have to hold her to keep her still long enough for her to get tired and then we carry her to bed) - she still loves to screech LOUDLY and I'm sure there are many more things I could list but those are the highlights for now - good and bad!
We continue to go to speech twice a week and physical therapy once so we are still very tied up with the traveling we have to do each week. Between these appointments and the trips to Birmingham for docs we are rarely home and it is starting to wear on us all. The kids sleep to 9 or so each day that we are home because they are so exhausted from having to get up early and not get back till late and constantly being on the road - and in a loaner car at that! My car had to have some major repairs and it is going on 5 weeks now that I've had a loaner but on the bright side this little car gets better gas mileage than my SUV and with all the traveling we've been doing it has been easier on the pocketbook :)
I hope to post pics from the waterpark and results from our test in the next day or so - so check back soon. Please continue to pray for Camilla - it is so comforting to know that at times when I'm frustrated or confused and don't know what to pray for her - that others do. Thank you for that! Even though we do have questions we know that God has brought us this far and that he's not going to give up on us now. "For I am confident of this very thing, that He who began a good work in you will perfect it until the day of Christ Jesus." And thank you God for that!
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