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!!!

Claire tries Sweet Potatoes

A few days ago Claire got to try sweet potatoes. Much to my surprise, Claire never developed a liking for the potatoes and seemed to much prefer the squash. Our next adventure will be carrots...and of course there will be video of that too.

Test Results, October 13

Knock on wood, this actually looks like a short stay in Doernbecher's. Claire has had relatively few seizures over the past 24 hours. It is difficult to say whether this is due to a Phenobarbital loading dose or due her Phenytoin level dropping rapidly. At any rate, she has been able to eat by mouth and has had some rare awake time.

This morning, Dr. Roberts (the primary Epileptologist) came in and informed us of test results from the muscle and liver biopsies. Claire has what is called a Mitochondria Complex III Disorder. This will likely end up leading to a diagnosis in the Mitochondrial Myopathies family of diseases. You may find some helpful information on www.mitoaction.org. Rebecca and I see this as a positive development. Mitochondrial Disorders are treatable with what's called a Mito-Cocktail--a highly concentrated mix of vitamins, proteins, and antioxidants. The Metabolic team is currently working on formulating Claire's Mito-Cocktail. There is no certainty that this will impact Claire's Epilepsy. We have to operate under the assumption that we will still have to manage her with anti-convulsants.

We have weaned Claire off of Phenobarbital and have now dropped Phenytoin as well. This will allow us to use these drugs as back-up rescue meds when Claire's seizures get out of control as they did on Monday. We are adding a new drug called Vimpat. This is a newer drug that has fewer side-effects than some of the drugs that Claire has already been on. It is not approved for children, but that is not unusual in drugs used to treat rare diseases.

So long as the Metabolic Department is timely with their Mito-Cocktail and there are no complications from adjusting Claire's meds, we expect to be released on Friday. Please continue your prayers for Claire--that she responds well to the new treatments and begins the process of healing and developing as she should.

Jake