In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, is defying the odds and not only living, but thriving and loving his life. This is an effort to share his joy in his journey. Like the little purple pansy, he is tiny, but strong and brightens his corner of the world. If you'd like to see more pictures and his story from April 2010 to March 2011, go to Http://www.carepages.com/carepages/GiftfromHeaven
Aaron's doing well, although he's a little higher on his oxygen and has been retaining a little more fluid than usual. We'll have to see if he makes it to church tomorrow. It will depend on how he does tonight. Maybe his bath will help to start moving the gunk in his lungs. It's been a little while since I did a real update, and we have some news.
First of all, last Saturday, some of the kids and I went to see Rio. While that was fun, it wasn't the highlight. We also got to meet a family that lives in the area who has a 5 month old baby girl with full T18. Mom and Alayna weren't there because Alayna had been sick the night before, but we got to meet dad and her 3 older sisters and older brother. It was really neat to connect with them. I'll put up some pictures we took of everyone together in the next few days. Aaron essentially slept through the movie, which was nice because then I got to enjoy it too.
Second, we finally got approval for Aaron's circumcision. He needs to have it done because little boys with circs have slightly fewer urinary tract infections than little boys without. A UTI isn't good in and of itself, but he also has a grade IV urinary reflux (grade V is the worst) which means that instead of going straight down the urethra and out of the body, the urine also refluxes back up the ureters and into his kidneys. This means that any UTI can also easily cause a kidney infection too. So the doctor applied for approval, I think in January. It was denied so I sent in an appeal and the doctor also appealed with more information. Again, denied. So I asked for a hearing. On Tuesday, we were supposed to have a pre-hearing conference over the phone with insurance, me, and the doctor. Two hours before the hearing, I got a call saying that the insurance doctors had gone over the file prior to the call and decided to approve it. Yea for actually reading documents before automatically denying something. Imagine that, they decided it WAS medically necessary. Plus, since it will be done in conjunction with his lip repair, ear check, hearing check and bronchoscopy, it will only be a tiny fraction of the bill, less than it would be for a 24 hour inpatient stay. If he ended up with a kidney infection, it would be much longer than that.
Finally, I have a favor to ask. There is a baby girl in Gilbert, Arizona being born on Friday. She also has full T18. I've been in contact with her mom several times over the past few months and remember only too well the fear and pain of those last few days before Aaron's birth. I'm sure they will be fasting for little Sophie and her mom, but I'm hoping that anyone who knows Aaron and is fasting might include this sweet family too. They would so much like her to have the chance to live with them here on earth for as long as possible. While the gospel plan is wonderful, and the knowledge that they are ours forever is priceless, it is still an almost unbearable agony to contemplate losing your baby. So if you can, please join your faith and prayers with this family. I know they will appreciate it.