Tuesday, October 26, 2010

Update, Oct. 26

I know there hasn't been a whole lot of updating going on and I do apologize. In our day to day goings on I forget to stop and report what is happening because it all seems so status quo. Since coming home from Doernbecher this last trip I would say that Claire has had some slight improvement. Claire is able to wake up most every day for at least a few hours. We continue to work on feeding her new foods and playing with her as much as possible. Claire's seizure activity has changed yet again and it is difficult to say what has caused the change. Claire is having fewer seizures per day, but on the flip side when she does seize it seems to last between 1 and 2 hours. Thankfully these long seizures are not actually harmful to Claire. Our little girl is strong and can keep her airways clear and breaths well through these episodes.

In our previous post we stated Claire would be started on a "myto cocktail" but when all was said and done the metabolic specialist wanted to start Claire on one supplement at a time so we can more easily pin point what is actually working. Claire is currently taking Creatine twice a day to help with her severe lack of energy. Though we don't know if it has helped her seizures at all, Claire is much more alert and "with it" when she is awake and the creatine is helping her motor control a bit.

On Nov. 1, we will have a therapist out to the house to show us the exercises they would like us to do with Claire to help strengthen her muscles and help her gain head control. Though the therapist will only visit us 2 times a month...you can rest assured Jake and I will work with Claire every waking opportunity we get. Claire is currently trying to move her head more than ever, but lacks the strength to control the movements.

We are again consulting with the neurologist in Portland to see if there is any tweaking of Claire's meds that can be done to help reduce the length of her current seizures. We will as always try to post updates.

On a side note...baby number 2 is cooking along. :) I am now 15 weeks into this pregnancy and so far so good. I am healthy and we have seen the baby's heartbeat @ 11 weeks and heard the heartbeat last Friday. We are scheduled for the "big" ultrasound on Nov. 24...the day before Thanksgiving. Believe me when I say though times are more challenging than we would like...we have much to be thankful for this year.

Oh...one other quick praise report...we are receiving explanation of benefits from the insurance and the coverage they provided Claire while we were in Denver was outstanding. We thought for sure we would owe bunches of money....but so far we only owe $29.75...Praise God!!!

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