Sunday, September 26, 2010

Video of Claire's first cereal



Claire is loving her cereal. When she is not awake enough to eat by spoon, we add rice to her formula and she eats it right down. Getting permission to feed Claire baby food was a big win for me (Rebecca). It is nice to see Claire learn an age appropriate skill and allows for a little normalcy in our lives. I have started thickening the cereal and Claire is tolerating the thicker cereal just as well. Up next in another week will be oatmeal. Once we've tried oatmeal for a couple of weeks we'll get to add veggies. Thank you for your continued prayers and for following all of Claire's milestones with us!!

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

Tuesday, September 7, 2010

Praise Report!!!

When you have a sick child price is no object for their care. Jake and I decided soon after Claire was born that we would not worry about Claire's medical bills. "God is faithful" became our motto. I received 26 explanation of benefits from the insurance company today. In going through and reviewing each one I was in awe that each EOB stated "you may owe provider...$0." When I sat and added everything together...100% of the Dr's fees were covered from Claire's stay in the NICU @ the Salem Hospital. For those who are curious...that's just over $25,000.00 that we do NOT owe a single penny for. Give God the glory and remain faithful...if this is not a reminder I do not know what is. Thank you all for your continued support and prayers...we are TRULY blessed.

On another note, since being home Claire seems to be slightly improved. The travel home was rough on her, but she had awake time yesterday and again today. We are looking forward to getting her in therapy and enjoy every moment she is awake and playing. I am happy to report that Claire's appetite is improving and she is again eating a more appropriate amount of food for her age. Each and every day God gives us a miracle.

Sunday, September 5, 2010

Going Home...Again

So it's September 5, 2010...and we are headed home from The Children's Hospital here in Denver, CO. Our 4 day trip quickly turned into 3 weeks but we leave knowing that no stone has been left unturned in the effort to find a reason for Claire's seizures. The good news from our trip is that overall Claire seems slightly improved and we'll chalk that up to the new medication that was started. We look forward to getting her in therapy so she can begin to strengthen some of her weaker muscles and begin to learn skills where she is lagging. Though we leave without a diagnosis or prognosis, we continue to trust and pray for a miraculous healing from our great Lord and Creator. We are also leaving knowing that the Dr.'s here feel confident in our ability to care for Claire. The neurologist that we were referred to said the only reason Claire should have to go back to a hospital is if she is requiring some iv medication...meaning her seizures are so bad we can not stop them at home. We hope and pray this is our last hospital stay! We thank you all for your continued prayers...they really do make a difference.