I lied...there is still seizure business to discuss. Charlie Claire's clusters are happening a bit more frequently and there are a few more spasms in a cluster than there had been. We called the neuro's office today and they told us to increase her Sabril to 12.5mL twice day - up from 10mL twice a day - this is the maximum dose she can get. We were a little reluctant to increase her dose so I called and talked to one of the nurses and she explained that since the infantile spasms are so devastating developmentally that what we are looking for is total elimination of the spasms and we aren't there yet so here we are...increasing her dose...
Speaking of development, Wendy the physical therapist came today. If I haven't said this before, we love Wendy! Since Charlie's mood has been so much better the past week and a half we have been able to get more PT in then we had in previous weeks. Wendy was super pleased that C is holding her head more center than she has been - in the past C would look to the right a lot and then switch and look to the left a lot and now she is looking straight ahead a decent amount. Charlie Claire also seems a bit more interested in holding things in her hands so we worked on finding the toys that she prefers. She still really likes the 2 toys we have that vibrate. We also started working on placing toys on her stomach and letting her grab at it with both hands and then bringing it up to her mouth. C did really well with this today. We have been doing sit ups with C for a while now and she has always done very well with this. Today, Wendy noticed that while doing her sit ups if you pause midway Charlie actually starts to pull herself up - Miss Wendy liked this!! More than likely Charlie Claire is going to be a lefty (I secretly love that we are going to have our own little south paw, get it ROCKY!) and she has certainly started showing a left hand preference...she holds toys better in that hand, sucks on that hand, etc. but yesterday she started sucking on her right hand - I am not going to lie, I almost started to cry I was so happy!
I did think of a couple things that we left out the other day in regards to surgery. It is unclear right now if the surgeon is going to have to take out C's motor and/or sensory strip. By the looks of the MRI her motor strip looks like it will be spared but as we have heard time and time again, they really won't know until they get in there. If they do have to take her motor strip out she is still young enough that her brain should compensate for what it is missing but only time (and a lot of PT) will tell. If they do remove it, C would probably not have fine motor skills on her right side - the surgeon said she probably wouldn't be able to play the piano but she would hopefully be able to play soccer. The lesser of the two evils is the sensory strip. If they need to remove this C won't have fine sensation in her right side, she will only be able to feel deeper pressure. Again, they can't give us a clear cut answer on that until surgery day. Another issue is how this surgery will effect CC's cognitive thinking...again another wait and see situation. As far as another risk...one of the things that could keep C in the hospital longer than expected would be if she needs a shunt. There will be extra fluid around her brain and it will be a matter of if her body is able to keep up and flush it out. If she can't then they will need to put a shunt in. The surgeon said this is not typical of the area that they are operating but it is one of the risks.
We are currently trying to get the ball rolling on all things Richmond. We are basically moving to Richmond for 2-3 weeks and the list of things we need to bring certainly isn't small. Mainly a lot of it has to do with Jackson - diapers, clothes, bibs, formula, toys, you get the idea! He doesn't travel light!! With Jason coming/going to and from Richmond plus working he isn't going to be home much so we had to set up care for our 2 dogs...who is sleeping at our house, who is coming over during the day to let them out, etc. Our family and friends are AWESOME, just in case you were wondering!! We booked our hotel (the corporate housing didn't work out) and the hotel is within walking distance, has a complimentary shuttle, etc. The hotel gave us a great rate and also gave us a friends and family rate so if you want to come visit us email me and I will send you the info. My mom, Jackson, Charlie Claire and I are heading up on the 28th to get settled and Jason will be meeting us there on the 29th...so will Aunt Sally! :) I am pretty sure MCV isn't going to know what hit it when the rest of our family shows up on the 30th!
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