Waiting...

Hey, it's Ryan here for another update on the ongoing drama which we call life. I swear you can't make this stuff up. First, an update on Ethan. He's gone through his cycle of antibiotics to combat the strep throat he got last week. They really didn't seem to help. He has been able to gain back some weight. Last week he got back down to 5 lb. 13 oz., but as of last night he was back up to 6 lb. 11 oz. They've really increased his daily caloric intake to help him gain weight. The reason we think he wasn't gaining quickly enough was because of the j-tube feeding directly into his intestines. This by-passes the stomach, and doesn't give his body enough time to absorb all the calories he needs. The catch here is, he must keep the j-tube until his esophagus surgery is completely healed. This is to make sure any feeding to his stomach won't reflux back into his lungs. He got an esophagram last Friday, and at that time they couldn't find any remaining holes, but they also couldn't confirm there weren't any. (I guess that's just the way it goes for us right now). Hopefully, this Friday they can confirm his surgery is all healed. During that same esophagram they also noted that his esophagus has a severe narrowing; at one point it's only 1 mm wide. They are going to have to dilate his esophagus over time, using a series of larger and larger tubes. This means he'll need to be feed through the g-tube in his stomach for a while until that can be dilated enough that he could feed orally.

We got the approval for his care to be at Children's Hospital Boston. Before you get too excited though, we have not yet received approval to transfer him there. Insurance initially has denied this claim, citing no medically necessary reason to move him there. The flight would cost close to $20,000. (The kid likes to fly private!). We are going through the steps of the appeal process now, and hopefully something will happen soon. As soon as we get that word, Tina and I will make arrangements to drive with Kevin out to our new home in New Hampshire. It's amazing to think that will be the first time she sees this house. Please pray that Ethan can get transfered out here soon and that our family can be together again.

We can't forget about our little Kevin. He's continuing to do great. At times I worry that he gets overshadowed by his big brother, but then I just think of all the individual attention he gets when we are not at Children's. The kid is pretty spoiled. He's has his good nights and bad nights with Tina. I can usually tell how the night went when I talk with Tina in the morning based on if she sounds like she's slept at all. She's been such a trooper through this whole event.

[Side note, the Reds just got no-hit in their first playoff appearance in 15 years! Go figure]

Things in New Hampshire are cooling down, and getting beautiful. The trees are starting to turn, and this afternoon I drove up north to the mountains to look at a couple of risks. Not a bad day's work. I'll post pictures of our new home soon. I've been waiting to let Tina get it settled the way she wants.

I can't forget to say Happy Birthday to my little sister Kelsey. She turns 21 at mid-night tonight. The Chicago nightlife doesn't know what it's in for with her! Love you peanut.

Thanks again for everyone's prayers and support. You guys are what get us by right now.

Much love,

Ryan, Tina, Ethan, and Kevin