Hi everyone,
Please excuse my long absence on updating the blog. As you can imagine, my days are much busier now that Tina and the boys have made their way to New England. It's incredible to be able to come home from work and hold Kevin and kiss Tina. It's equally as great to be able to hop in the car down to Boston and visit with Ethan whenever we can. We've still got much to get done around the house, and there seems not to be enough time in the day, but things are improving substantially.
An update on Ethan. He's been doing great since his transfer to Children's Boston. They've done several tests, but no new procedures as of this point. However, he's been off of the ventilator since he's been out here. They are to the point now where they are letting him breath on his own for 6 hours at a time, and putting him on pressure support (similar but better then CPAP) the following 6 hours. He's been thriving under these tests, and has not had to get a custom trach tube put in. They've done another ecocardiogram and they do not believe his pulmonary stenosis is as severe as they first thought. They are saying now that his heart surgery will be mid to late January at this point.
The most exciting news right now is that they are telling us he could possibly be home for a few weeks around Christmas. There are still a lot of tests to determine if this is a real possibility, but it's very encouraging to hear that it's possible. They surgeons here have also told us about a procedure they do called a "aortapexi" which could potentially get him off of the trach as early at March. Again, we still don't know anything for sure, but we are greatly encouraged by the news. We really miss Sharon and some of the nurses at Nationwide Childrens, but are very happy with the care he's been getting here as well.
For those who didn't see our Facebook posts, we sold the MDX and bit the bullet and got a minivan. It's a very difficult decision to come to, but in the end I think it makes the most sense. I've received plenty of advice on how to make it cooler, with adding "ghost flames" being the most popular idea. We did find one that's all wheel drive though which I have a feeling will come in handy given the New England winters.
Another side note, we started construction on our garage this past Thursday. When we bought our new house in foreclosure, we had planned to add it on as it only makes sense out here. The contractor is telling us it will be done by the middle of January. I firmly believe the testosterone of the construction, balances out the lameness of the minivan!
Kevin is doing so much better since he's been out in New Hampshire. After the first night here, he's been sleeping much better through the night. Usually we get him to sleep from around 10 or 11 pm to 5 am straight which has been incredible. It's amazing how Tina's spirits have lifted by a combination of sleep and having our family reunited.
We are very happy and grateful to have my sister Kristen living with us. She's got a job at Mt. Sunapee ski resort as a ski instructor this winter (taking after her big brother). I tried to score a season pass, but she couldn't get us a deal yet.
Tina loves the house, and is settling into the greater Concord area. She's still working on the navigation aspect, but has figured out where the grocery and mall are at. She looks like a hot hockey mom in her new van. (I've looked, but have had trouble finding gear for the boys just yet). Apparently they don't make skates in premie.
We have so much to be thankful for over this holiday season. If our entire family can be together over Christmas, it would be the greatest gift from God. Tomorrow it will be Tina, Kristen, Kevin, and I working on a 10 lb. turkey. We plan on eating early and then driving to Boston to visit with Ethan. We hope everyone has a joyful and Happy Thanksgiving. Thank you all so much for all of the prayers and kind words. You guys are the wheels that keep us moving.
Much love,
Ryan, Tina, Ethan and Kevin
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