A wealth of good news

Gee, it has been a LONG TIME since this blog was updated. We have been busy people (well, what is new?). Also, I keep hoping to finish the mega-huge thank-you post listing everyone who has helped us along the way...it's going on six pages in MS Word now.

In the meantime, here is an update on Alex, followed by some pics and videos -- lots of exciting news:

• Alex had his first visit at Gillette Children's Specialty Hospital in Saint Paul this past week. We traveled up the night before and stayed with relatives (thanks Mom, Mark, and Meagan!). It was an all-day appointment that began with a thorough physical therapy evaluation (see video below), followed by a meeting with an interdisciplinary team of doctors (see photo below). The whole trip was pretty grueling, especially for Alex, but the people at Gillette were great. This is going to get the ball rolling on a number of fronts for Alex. Most importantly, the Gillette team will be charting a path toward greater mobility for Alex. It's pretty complicated because of all of the physical and neurological issues, but the team seemed pretty optimistic about Alex being to walk someday. We're probably looking at that happening some ways off, given the extent of the intervention needed, but that is good news indeed. They will also address some of his other pressing medical issues as well.
• Yesterday Alex tried out a wheelchair for the first time. We have been slogging through medical appointments and paperwork on our way to getting better mobility for him, including a wheelchair...and who finally introduces him to a new world of mobility? Our friend from the local motor and mobility group, who we happened to run into at the public library. She was out with her kids, including her son, who was playing on the computer...Alex took an immediate interest in the chair, and she offered for him to try it out. It was truly eye-opening to see a kid who you're used to having to help to get everywhere suddenly liberated, moving all over the place with much less effort than army-crawling. Check out the video below!
• It turns out Alex will be going to school after all; it is just a question of how soon. There is a preschool here in town that focuses on special needs kids (although non-SN kids are integrated into the classroom as well). The head of the preschool called us up and specifically invited us to check it out. We'd had other plans -- basically to create an IEP for in-home care -- but this looks like a better option. The staffing ratio is so low -- 1:3 -- that Alex would get great attention from the staff. He would also benefit from daily physical therapy, speech therapy, and occupational therapy -- something he'd never be able to get anywhere else. Plus, they have a wealth of specialized therapy equipment and adaptive equipment right in the room. The only real question is how he might handle separation...we're thinking probably not so good, so our plan is to introduce him to the environment slowly, working him up to half-days every day. We visited this preschool years ago (when we were looking at options for our oldest child) and we were very impressed at the time; this place continues to have a great reputation. While dropping off paperwork necessary for his IEP, we ran into the woman who would likely be his teacher, and she dropped what she was doing to come out onto the playground to meet Alex. She stayed maybe half an hour getting to know him. Wow. What a great first impression.
• Alex is now wearing his first pair of braces, and with them, real shoes. He hates the braces, which are designed to stretch the tendon in the back of each foot, but they are one piece of the overall program that will eventually have him walking (we hope).
• A number of things are falling into place to help us with the financial end of things; while we are not finished, the excellent support system that we told the Ukrainian court about when we were adopting Alex is starting to kick in. I love the American government right now -- or at least the Minnesota branch of it that provides "above average" care for our kids with disabilities. We also got a disabled persons parking tag, which will be useful in the winter when it is snowy and icy outside, and we are on our way to getting a dedicated disability parking spot in front of the house, which will also be useful on snowy, icy days when Winona State students decide that our house is the perfect one on an otherwise empty block to park in front of.
• We have been encountering angels here, there, and everywhere...besides the ones mentioned above, we (me and five kids) were going into the supermarket the other day and were stopped by two older folks who were just so complimentary and encouraging -- just what I needed to hear! And then, inside the store, another gentleman bought the kids donuts, handing them to Ben with a receipt. Wow. Note to self: Do the same thing for someone else who might need encouragement!
• Alex's PT has been raving about the progress he has been making, which is not surprising given how low his baseline was. But he can now sit up at the top of a slide for thirty seconds or more unassisted, and push himself down. He also sits up in a chair better, and can stand up for about a minute at a time. He also can pull himself to a standing position from a sitting position, given something to pull up on.
• Alex has been acquiring words at such a rapid pace that we no longer keep track. His speech is now a mixture of Russian words he knows that we know and English words. So far we're just hearing one word at a time, with a few two- or three-word phrases thrown in. I have heard reports of sentences from others, but haven't heard this myself yet. Sentences would be the icing on the cake.
• Alex's weight is now just under 28 pounds -- almost a gain of three pounds in nine weeks, which his doctor at the International Adoption Clinic says is great progress. He also sports a healthy-looking tan!
• Finally, we have to direct you to the Bringing Laurel Home blog, where the Harlans have been documenting the story of their adoption of "Laurel," now "Alexandra Hope." This is the teenage girl we had been considering adopting. All I can say is...wow...it is SO MOVING to see the pictures of this happy girl on her sixteenth birthday! We saw her and spoke to her briefly at the orphanage while we were visiting Alex, and she is a delightful (if somewhat shy) girl. She was destined to be transferred to a mental institution on her sixteenth birthday...but instead, look at that HUGE smile! Thanking God for a happy ending...keep her in prayer as she makes one of the most difficult transitions of her life.

Lest we leave the impression that all is sunshine and light over here, let me just say that the days continue to be HARD, especially with Susan working full time now and five kids at home and limited PCA support. Alex is as much a handful as any child his age, except that in his case, any change in the object of his interest requires assistance from someone else. You don't quite realize just how transient a small child's attention is until you're required to facilitate it. We also have other kids who need our attention and who struggle with the adjustment, especially our youngest.

 On the whole, though, we have seen a lot of progress since our last update. We also know families who have adopted little ones who are having much greater difficulties with behavior and/or medical issues. We think of them often, and keep them in prayer.

And now for some pictures and videos:

Sitting up at the top of the slide. He can also do this without holding on.

It turns out that shucking corn on the deck with brothers and sisters
is a lot of fun...

...and great for those fine-motor skills!

On the playground.

Close up!

Shucking corn at the farmer's market (live music in the background).

Playing with water in the pool.

The kids improvised this cardboard go cart.

Helping to pick carrots, from inside the carrot patch.

Experimenting with music. Just be glad this photo isn't accompanied by a sound track.

Four of the doctors on Alex's Gillette medical team.

Trying out the wheelchair at the library.

Like all the other kids, it is murder trying to tear Alex away from this computer station at the library.

Alex's new braces and shoes.