Too Much Has Happened!!

Hmm, what should I title this posting? First it was going to be another update of Faith's Baha implants which are healing well and will be ready for her to wear her sound processors (the little aid she has been wearing on a headband since she was 2 months old) in about one more month. Then there was the stomach virus that got everyone but me for a solid week and almost landed Faith in the hospital for dehydration. Then it was going to be Anthony's 5th Birthday Party at the Bowling Alley and his party at home on his birthday, then Christmas, then January came and I found out I was getting laid off (which is official now, my last day of work is Friday, 1/30/09) and last of all it is going to be about Faith's upcoming Jaw Distraction that we have moved from this summer to next month because of me getting laid off. I promise I will come back and insert pictures from Anthony's Birthday and Christmas as those were very good days in a very difficult month!!

Unfortunately I really don't have time to write much now as it's already midnight, but just wanted to provide a quick update. I/we/no really just I figured we need to do the surgery now because I have 4 months of severance with pay and health insurance so it would be better to get it done now than try to find a new job now and try to take 5 weeks off work a couple months later. So, we are close to finalizing our plans to take Faith to Cincinnati Children's Hospital around the week of Feb 16th for her first major jaw distraction surgery. If it is as successful as we are hoping, it could result in Faith not needing to be trached any more (although this would likely take several months to a year following the surgery to do sleep studies and testing by capping her trach before making the final decision to decanulate). The surgery itself has three separate parts, the first surgery is to put the distractors on and cut the jaw bone, then we spend about 5 weeks healing, distracting (widening the gap 2mm daily so new bone will grow) and more healing before the second surgery where the pins will be removed and stabilization plates will be put in. About 4-6 months later, those plates will be removed in a 3rd surgery. From all the parents who have been through this before us we have learned this will be a month of hell -- it will be painful for her and she won't sleep much if at all through the nights during the middle phase -- but the results are worth it. We are not excited about it, but I am glad we finally are ready to go through this first step towards giving her a normal airway and better mouth structure for breathing, eating and learning speech. Speaking of Faith learning speech -- you should hear her now!! She is really starting to be very verbal and we are able to understand an awful lot of what she says, although it's very choppy right and context is critical. Her "thank yous" come out like "ank-oo" and most of her words come out primarily as the vowels in the word without the consonants. I really need to video tape her again before her surgery!

Well it's very late and I have to quit for now. I'm hopeful I will get some pictures uploaded very soon. Thanks for checking in and listening and commenting - the support we get from so many people really gives us a lot of comfort and strength!
Robin