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.
When it rains, it pours. We got the certificate of citizenship on Friday--late, but better late than never, as they say. I went into the social security office on Monday morning, as soon as it opened. During my last two visits the clerk had been contending that she couldn't issue a number without the certificate of citizenship and a birth certificate, so I brought a printout of the Social Security Administration web page stating otherwise, along with a printout of all our Facebook friends in the Reece's Rainbow adoption group who got a number without a birth certificate. At first she couldn't figure out how to make it work--she's navigating her way through a series of screens with limited options on the computer system--but after some fooling around, she finally got it to go through. This morning I went back to pick it up, and called our social workers with the number before I was out of the parking lot.
Our U.S. birth certificate for Alex arrived Monday, too.
As for Alex, he continues to do very well. He is smiley and content most of the day, enjoying the little things with great glee (like driving a shopping cart made like a car) and interacting with us more normally day by day. He continues to acquire new English words daily, and has been stringing them together in short phrases. We are a long way from being conversational, but it is good to see progress. I keep wondering where his language abilities may plateau out...while we witnessed limited exchanges (in Russian) with adults at the orphanage, they weren't very sophisticated conversations. We'll see.
A couple big milestones: Alex now folds his hands to pray before dinner, and joins in when we say "Amen." I don't think he has any idea whatsoever of the significance of what he's doing, but it is great to see him participating in a group activity. And Lord knows, the little guy is a prayer unto himself in many ways. We see him acting compassionately and empathetically every day.
My other big milestone...he has started watching TV! "Blue's Clues," to be specific. He asks for it by name beginning in the morning: "Boos Coos? Boos Coos? Boos Coos?" (He is very persistent. Very.) It's a strange milestone to mark, given how anti-television I am (I pride myself on the fact that our two-year-old had remained entirely innocent of Blues Clues, Dora the Explorer, Elmo, or any other television programming, for the entirety of his life up until this summer). I think television becomes a substitute for more productive developmental activity for young kids. But in Alex's case, it is interesting to see that he can focus on something so abstract for a while, and apparently get something out of it. On the long plane ride from Germany to Chicago, he had zero interest in the in-flight programming.
Gee, I never thought I'd be singing the praises of Blue's Clues, but there you go.
We went to Prairie du Chein, Wisconsin, for a couple of nights in a spurt of high hopes for a family vacation. Well, it had some very good moments, and we remarked later that Alex was a trooper for most of it (although he never slept to speak of). We visited some "online friends" on the way (that's always fun), and got there Sunday evening. Of course, we left the diaper bag at our friends' house an hour away. Of course. Otherwise, we found out Alex likes Chinese buffets just fine.
The snack is possibly the only redeeming aspect of a nature hike for Alex!
The waterpark--kinda cool, kinda scary!
Monday we went to Pikes Peak state park in Iowa, a couple of minutes away. A gorgeous park. It has a stunning view of the junction of the Mississippi and Wisconsin rivers. We managed to hike one of the trails with Alex in a stroller. Those stairs were fun, but Jerry was not to be dissuaded (and Alex thought the stairs were bumpy and hysterical).
Then we had a picnic at the Prairie du Chein park, and went back to the hotel. We had found a hotel with two rooms--a main one with a King bed and kitchenette and a room attached with two bunk beds. It was surprisingly reasonable too. But the reason the kids really wanted to go--the hotel had a small water park.
The other hit of the trip was watching the Olympics, which had just started. We don't have TV at home, so the kids really got into it. OK, me too. Julia thought water polo was really boring though.
A trip to the National Effigy Mounds monument in Iowa and more swimming rounded out the trip. I don't know that Alex really enjoyed it, per se, but he didn't hate it and seemed to enjoy being with us for this little adventure. And he was happy to be home at the end (me too).
Beyond that, we've haven't updated much because someone or other has been sick. Matthew had a nasty ear infection, Alex caught a cold, Jerry was sick.... Alex did manage to lose his bottom two front teeth. The first one, we don't even know when he lost it--we just noticed one day it was gone. The second I saw him lose as I was helping him eat, and saved that one. I think the tooth fairy is going to have to hold one to get this one, given I don't even know how to explain a tooth fairy to him yet!
Alex seems to be doing better every week. Our last trip to the PT provider was very affirming, because she had not seen him in two weeks, and was thrilled with the progress he had made in that time. For example, we got him to tailor sit by himself briefly, and stand with his heels down with support, although that is not yet the norm. She clearly likes Alex and is very happy with his progress so far. He should be getting braces next week. Also, Alex has been very affectionate toward Jerry and me (especially Jerry--what a daddy's boy he is). One time I saw Jerry holding Alex in his lap, and Alex was looking at Jerry with absolute unfiltered adoration. My goodness.
Tailor sitting without support.
Alex also has had a language explosion--he is saying more and more in English, almost always one word requests, but sometimes a couple of words together. Honestly, I can't even list all the words at this point. Yesterday I was changing him and he was clearly asking for the word for my coat (it was chilly)--"shirt?" No shirt. Coat. "Coat. Coat." Points at shirt--"shirt."
Jerry interjects: I can list a lot of the words he says! Please, kiss, no, yes, stop, go, eat, sleep, push, swing, slide, walk, ball, balloon, shirt, socks, play, all done, music, open, sit, amen, and much, much more! His latest cute trick is folding his hands for prayer and very enthusiastically shouting, "Amen!"
On the more mundane front, we continue to slog through the paperwork morass. My spiritual director reminded me once that God, being omnipotent, can even work through bureaucracies. Well, you may want to pray for that, because we still don't have a certificate of citizenship or social security number. And we need one or the other, preferably both!, asap.
It looks like we will have a series of appointments at Gillette Children's Specialty Hospital in St Paul in late August, although that isn't set in stone.
Things keep moving, we keep trying to get some sleep. On that note! Have a good night, everyone!
