The sweet friends from PCY who had their first communion. We took a picture together yesterday because we couldn't do it after Josie fell. So glad we did it.
Dr. Mitchell and the Girls
How cute is it that Grams did the quilt sewing project at school with Josie's class. Gramps came for moral support. They came over for dinner last night so we could make sure my machine was working properly before today. They got to the class before us because we were stuck at Josie's neurology appointment at Childrens Hospital LA (more on that later). It is so remarkable that Josie has such young great grand parents and she can really have them participate in her everyday life. Thanks G and G!! We love you so much.
Onto the beginning of the day. It started at 7:45 with her annual IEP. Always an interesting meeting especially we you are trying to decipher the likes of Josie. Challenging at best. It was the overall consensus that she is learning despite the many distractions like missing half the year and more time hen that for appointments,etc, being put on yet another nasty seizure med and trying to find out how to get through the side effects that aren't actually listed as possible side effects, dealing with a body that doesn't want to do what the mind does, trying and achieving social butterfly status (yes she has mastered the social skills category as you all well know). How about the fact that she is missing 10% of her brain and has had more surgeries than all the lost teeth in her class to date. Well, I have to say we doing ok. Grade level appropriate? no, but thriving, YES! IEP complete. Thanks to the wonderful people that help her at PCY. We are the luckiest family to know them.
From the IEP we went straight to Childrens Hospital Los Angeles for her neurology appointment with Dr. Wendy Mitchell. Funny thing there, when we got put in a room, I went up to the front desk to bring them our paperwork and there in the waiting room was her sister, Teresa with Florie and Vivian. We didn't communicate very well on that one. The good news is that the girls got to spend the next hour together waiting for the doctor. Teresa was "talking" and smiling at Josie. Josie loved that she was there and was really playing with her. Always a treat to spend time with sister. Just a quick update on neurology, she was put on Topomax about 3 months ago. It has never gotten rid of the seizure activity or even decrease it. As soon as she was on it, she couldn't recall words or concepts like she could before. There has been a huge breakdown in word recall and even in tasks like math facts and letter recognition since this time. We have all been stumped and hoped it wasn't a regression. Not regression just seizure medicine. Needless to say, she is being weened this very minute. The bad news is that there isn't much more we can put her on. In about a week we will do a 4 day inpatient video EEG to try to determine the frequency, length and area of the seizure activity. From there we will be presented with options such as the Keto diet first and onto brain mapping which if they are localized could lead us into removing the part of the brain where the activity is taking place. This would only occur after extensive testing and if it won't cause more brain damage. Darn seizures. I haven't told her about her inpatient stay yet. It will be hard to keep her down that long when she feels fine. Lots of games, toys and books. Visitors are welcome. At least there is a great explanation for the lack of word recall and memory loss. I can't wait to have that back.
She sure did great at therapy today after a very long day. She is a champion. Liz does such a great job with her. Liz changed her stepping order and it seems to be really working. We are trying to get it to be a habit before we return to Michigan so they can keep it going. We are so fortunate to have such a great team.
Please pray for our Mending Kids International medical mission to Ecuador. They will preform 40 - 50 open heart surgeries in 10 days. Remarkable to say the least. I will find out what the blog is so you all can follow this incredible heart mission.
Thanks for checking in with us. Night, Jenny and Josie
No comments:
Post a Comment