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Recovering.... the perfect word to describe our current emotional state. I wish I could say the holidays brought joy and happiness for our family. Alas, Jack spent Christmas and his 1st birthday (Dec. 28) on as much morphine and tylenol his little body could handle. Jack has eight teeth trying to grow in, and it's been a slow and painful process-- for all of us. On New Year's Day, however, things started turning around. Despite Jack's seizures and teething issues he appears now to be happier, and is even eating more! We are very excited and encouraged by this. Yes, 2008 has gotten off to a good start. As far as Jack's medical and therapy sessions go, here's where we are: Jack is a growing boy! If you've seen his 1-yr. picture, you know he's outgrown the baby stage. Sad for us, but good for him. And I will say, he is an adorable little boy. We'll keep him :) Some of you also know the struggles we've had over the past six months, trying to get Jack a new, specialized feeder seat and stroller (since he's totally outgrown his infant seat.....which we're still using....). Long story short, we were working through a home health company that provides rehabilitation equipment to children. For six months we've been waiting... and waiting... and waiting. We recently found out this particular company never submitted our prescriptions or paperwork to our insurance to approve! Not only that, when they transferred our case to another home health agency (that's another story), they falsified records stating that Jack had already been visited and measured for his feeder seat and stroller. You can imagine my reaction upon discovering this information! In any case, Jack has now (thankfully) been measured, and we'll be waiting only another six weeks for insurance to approve the request, and the equipment to be delivered. Until then (since we decided to discontinue using the infant seat, and we still don't have a stroller), guess what I bought the other day-- I've been wanting it for months, but didn't want to pay the money-- the Ergo Baby Carrier!!!! It's the cadillac of all baby carriers, and it's perfect for anyone with a special-needs child. I say "child" because it can hold up to 100 pounds-- no kidding. On one website I went to, there is a picture of a mom carrying her 9-year-old in it. I'm not making this up!! Anyway, it has extra head supports and it's super comfortable. I can't believe I didn't get this earlier. If you know anyone with a special needs child, this is the carrier for them! So, there's my pitch. Are other piece of good/interesting news came when we visited a geneticist earlier in December. I don't think we ever really wrote about what happened at that visit. Though we still have not decided whether more biological children are in our future, the good news is that through gene therapy we can still consider having more children. The actual procedure is called "Preimplantation Genetic Diagnosis testing." I'll let you look it up, but essentially, it is taking my eggs, testing them and removing the Menkes gene, then going forward with in-vitro fertilization. Ordinarily an incredibly expensive process (upwards of $20,000 for the initial try), our insurance, except for doctor co-pays, will completely cover it. It's pretty amazing what science can do these days. We hope your 2008 is a good year. We continue to take each day as it comes, and thank God for the time we have with Jack. Blessings, Katherine, Anthony, Jack & the pups (Sophie, Bailey, and Pecas) |