Encouraging news...Sept. 23

Last Thursday we had a clinical visit with Dr. Roberts at Doernbecher’s. This was a short visit but we had some positive news. While in Denver we had a MRI, but the only information we really got back about it was that Claire’s Neuro connections were behind and that she was underdeveloped. Dr. Roberts went back over the report. Yes, she is behind, but not as far behind as the Doctor at Denver Children’s suggested. This was very promising to Claire’s future prognosis.
We are continuing to reduce Claire’s medications. If you’re keeping score, she’s currently on Phenobarbitol, Phenytoin, Topamax, Keppra, Parydoxine (Vitimin B6), and Ativian, her rescue drug. We are tapering Phenobarbitol and her last dose is October 3. This is very good. Phenobarbitol causes drowsiness and causes the liver to work in overdrive. Very likely dropping this medication will help her other meds be more effective. We will then likely taper Phenytoin which has similar side effects to Phenobarbitol. It would also allow us to go to Phenytoin as a secondary rescue drug.
We still have no concrete results from our visit in Denver. Dr. Roberts is most interested in the skin biopsy. They take the skin sample and actually grow the skin in the lab. The variances they see in the lab over time could expose metabolic disorders. Unfortunately this is time consuming. Other tests we did involved genome sequencing and are also very time consuming. I don’t expect to hear anything until our next visit with Dr. Roberts in the second week of October.
I wish I could say that Claire’s seizure control has improved. But the reality is that she still has good days and bad days. Her best day could only have 5 seizures. But a bad day can still easily clear 50 seizures. The only thing that has really changed is Rebecca and I’s ability to manage her. We are very strategic about her rescue drug. We know that Claire has her worst seizure in the stage between sleep and awake and vice versa. A long string of seizures during that time don’t allow her to rest therefore she gets exhausted and tries to sleep, causing more seizures. Those are time when we give her regular doses of Ativan to help her sleep. We have found that buys us more regular 5 hour stretches of awake time.
Those awake times are extremely valuable to us. We play with her and encourage her to exercise her muscles and interact with us and her toys. Last night, she picked up her rattle for the first time on her own and put in her mouth, quite the milestone for her. We also started her on cereal last week and spoon fed her for the first time. These little wins are very encouraging.
Next week Claire has her Early Intervention appointment with Willamette ESD. We hope to get therapy from both them and private therapy sessions to help improve Claire’s Cognative abilities and her strength.
In other news…. Well, let me preface this by reminding you all that Rebecca had 5 miscarriages prior to having Claire. For that reason, we were resistant to going on a Pharmacuetical Birth Control and risking damage to our delicate systems. In short, Rebecca is pregnant with number two. We had an ultrasound on Friday showing a healthy baby with a heartbeat. We are 11 weeks into this pregnancy. For my part, I am excited about this. I surprised myself by the joy I take in having a baby in the house, even with Claire’s special needs. Since our COBRA will not expire prior to the birth of number two, we will still be double insured at that time. Our newest addition is estimated to arrive on April 17, 2011.
I know the first question many of you will have is “Does another child risk the same disorder as Claire?” The truth is that nobody knows. Since Claire’s disorder falls into a 1 in 500 million category I would suggest we have a better shot of winning the lottery twice in a row than our second suffering the same disorder. That being said, if the geneticist are able to identify the issues, we will have our second tested for the same issues.
Since our family is expanding rapidly. I have decided to retire my company car and take the company stipend. On Saturday we purchased a Volkswagen Routan mini- van from a client in Medford. The van was delivered today.
Thank you for your continued faithfulness and prayer. We ask that you pray for Claire to improve and develop through her therapy. We ask that you pray for the perfect health of our second child.

Sincerely,
Jake