But, all is good. Madalyn's behavior is improving each week as we wean off Keppra and increase Depakote (both seizure medications).
Madalyn is a great little laundry helper as you can see in this picture! She is also great at holding open doors, and swiping hotel cards to enter the hotel.
I am enjoying getting to know more and more about Josephine each day. She is opening up and becoming more expressive. She doesn't have many new words, but has started babbling with a lot of expression and laughter. She now smiles easily and often. She loves to get her sister hyper and will act crazy in the bed at night just to entice Madalyn to tickle and wrestle with her.
Tonight when I asked Josephine "who is mommy", she hugged my neck tight and kissed me right on the cheek. I am amazed by this child's sweetness! As I was playing with Madalyn this afternoon, Josephine asked to get in her highchair. She ate a snack and then reached for a crayon and coloring book. She quietly colored (scribbled on the paper) for another 30 minutes.
As far as camp progress, Madalyn can do monkey bars again. She lost her ability to do monkey bars sometime after she had to stop her first seizure medicine. I don't know if it was because she didn't practice for a few weeks, or if her motor skills regressed due to spiking. Unfortunately, the therapists here feel she has regressed some from last year. She is still doing great, but her left hand is not as quick or strong as it was last year. Because she does constantly use all of her skills, I don't think she has regressed because of lack of practice or therapy. That leads me to believe it is from the seizure activity. This means once we get that under control, she should gain it back.
The main goal for this summer for Madalyn is crab walk. Monkey bars and crab walk are strength building activities which are great exercises for all people, but especially someone with hemiparesis. The tightness (tone) and weakness is forever, but with a regular strength training regimen, she will get the most function possible. The therapists think crab walking is difficult for Madalyn because of a weak core. Therefore, they are working on exercises to strengthen her core muscles.
Josephine has gained strength and over the weekend was able to hold a side sit position for a few seconds without support. This is a major accomplishment. She still cannot open her fist, or move her fingers, and realistically, that may not happen this summer. I've talked to parents of kids with arms similarly affected, and it seems the children are around 3 or 4 before they are able to open the fist. I do think we will get there eventually.
For now, I'm thankful that she is adjusting well and is happy. Motor skills, although a worthy goal, are less important that health and happiness:)
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