Drive, Alex, drive!

As Alex's Botox and phenol treatments have gradually helped his legs loosen up, we've seen a lot of improvement in his ability to move...he is frequently asking to "walk" (while holding on to our thumbs). He needs improved leg strength and his brain needs to learn how to balance his body standing up, but if he is able to pull those two pieces together, I think we're going to see him walking with canes within the year.

Here is another milestone. Alex's grandma had picked this little scooter up for him prior to his arriving home. Well, he wasn't able to balance on it, much less make it go, for the longest time. But just the other day, he figured out not only how to balance, but how to make it go. Here's what it looked like:

Alex in the news

Our local paper did a big front-page story on Alex on Christmas Day. You can read the article here:

http://www.winonadailynews.com/news/article_8ba702ae-4e12-11e2-8b38-001a4bcf887a.html

Run, Alex, run!

Alex received Botox and phenol injections on Tuesday. Today, just two days later, we're already seeing such a huge difference in his muscle tone and flexibility--and Alex has noticed, too. He could tell that something was different! And once he figured that out, he wanted to do a lot of walking and standing with assistance. To fully appreciate the following video, it helps to have seen him try to walk before. When he tries to walk without having his legs strapped into a walker, they "scissor"--each leg gets drawn in front of the other by the tightness of the abductor muscles in his leg. Having his legs constantly want to cross at the ankles makes it very difficult to walk--he needs to keep pulling one foot out from behind the other.

But today, he spent almost 45 minutes voluntarily walking around, with minimal support for balancing purposes. He was thrilled; in the video, you will hear him say, "Run! Run!" While he isn't exactly "running" yet, this is a HUGE breakthrough:




And the best news of all is that this is just the beginning. The effects of the Botox and phenol should continue to increase for the next month or so, opening up a window for more effective physical therapy.

On another note, we are still collecting money to send to Alex's old orphanage in time for the Ukrainian Christmas. If you are interested, please contact us by Jan. 1.

Botox and Phenol Injections

Some of you know that Alex was scheduled for a little outpatient surgery today at Gillette.  He is getting what many kids with CP get in this country, botox injections in especially affected muscles and phenol injections on a couple of nerves.  The idea is to weaken the hypertonic muscles and interrupt the message the muscles are receiving from his brain to overtighten certain muscles.  The effects are temporary but usually significant.  It should help him walk better and stretch his arms better, although the bigger issue may be making sure his muscles can stay relaxed enough that his legs don't contract out of his hip sockets.

Anyway, the phenol requires general anesthetic, so I was a little concerned, but Alex sailed through like a champ.  I was able to go back with them while they put the ether mask on him, and he was very calm throughout.  Waking up later, he began crying.  I asked him if he hurt (I even threw in the Russian to make sure), and he emphatically said no.  I asked him if he was scared (we think he knows the term now), and he also retorted no.  Our best guess was just that he felt disoriented and "weird" from the anesthesia.  He calmed down in 5 minutes with the help of a promised popsicle.  Halfway through the popsicle, he began asking to go home now.  OK, then here we go!

We should see some kind of results in a week or maybe less, gradually increasing until the 1-2 months out mark, and then decreasing.  This will likely be a 3x a year thing, although not always with the phenol, which lasts longer.  We'll keep you posted!

A Christmas present for Alex's orphanage?

Sorry we haven't updated as much recently...we have photos, we have news...what we lack, especially during the holiday season, is time!

I did want to briefly share with you our plans to make a small monetary donation to Alex's orphanage, to be used as the director sees fit. You might recall that the money we donated out of Alex's state-sponsored fund was used for meat and seven real windows, to keep out the freezing cold. There are millions, if not billions, of needy people in the world, and many worthy causes. We happen to have a personal connection to these children, so we will do what we can.

We are not actively fundraising for this, but if anyone wants to "add on" to our contribution, please feel free to do so. We are currently waiting to get the okay to move forward from the team in Ukraine. We hope to have something to them by Jan. 7, the date for Orthodox Christmas this year. If you'd like to participate in this, please drop us a line or leave a comment on this post.

Alex at five and a half months

We know that when we start hearing a lot of “How’s Alex doing?” questions, it’s time for an Alex Update, so here you go!

Let’s start with his physical medicine and rehabilitation appointment at Gillette Children’s Specialty Healthcare on the Tuesday before Thanksgiving. We spent the hour we had with Dr. Najarian peppering him with all of our pent-up questions. Some key developments:

• Alex should be able to be toilet trained, in the sense that he is intelligent and shouldn’t have any cerebral palsy related problems with bladder/bowel control.
• Alex should be able to walk “independently” someday, with the aid of a light walker or possibly forearm canes.
• Alex is going to start getting Botox and Phenol treatments in his legs. These chemicals basically block neurotransmitters so that the message from his brain that constantly tightens his muscles is partially blocked, reducing the “tone,” or “tightness,” in his muscles. We’re waiting on paperwork to be finished to know exactly when he can start this local tone management, but we expect the first treatments to start within the next couple of months. The shots will need to be repeated every three months. Fortunately, they sedate the children so they don’t remember the experience and it isn’t as painful.
• The doctor also wrote a prescription for Alex to get a special seating device called Seat2Go. This device will provide the stability Alex needs to sit up straight and not worry about falling over, which in turn will allow him to focus on other tasks—like eating with two hands, other fine motor skills, etc.

Besides the good news out of the appointment, Alex has continued to make progress almost daily on all fronts:

Language

Alex’s English continues to improve steadily. He has completely stopped using Russian, and readily repeats any new word that seems significant to him. The more we see of his language development, the more we suspect that he never had enough language exposure growing up to really develop basic language skills even in Russian. In other words, our suspicion is that he is not only learning a new language, but in many areas, we think he may be learning language skills for the first time.

How well is Alex speaking? We think his vocabulary may be around 500 – 1000 words, although his sentence structure more resembles a three-year-old’s. Our toddler is more fluent than Alex, with a greater vocabulary and understandability, but Alex is catching up fast. His articulation is frequently poor. Those of us who work with him regularly can understand him well enough, His speech therapist believes his articulation will resolve (or at least improve) on its own, although he will probably need to work on it with someone down the road.

Alex clearly understands more than he says…a big clue being his improved ability to hold very simple back-and-forth conversations with grandparents on the phone.

Some favorite words and phrases that we hear from Alex: “Thank you!” “Almost all done?” “Have a nice day!” (to sibs leaving for school) “Okay!” (This last one you have to hear to appreciate, because he has this cute sing-songy way of saying it.) Many of his sentences begin with the words, “I want,” which is not surprising, given how important it is to be able to express needs/wants; I know I learned the Russian equivalent and used it frequently. He still relies heavily on single words to convey an entire thought or idea.

Social

Alex has just recently started interacting with his older siblings in a more intentional way. He can say all of their names (except Matthew’s) very clearly, and calls on them to play or to help him with his needs. He enjoys playing with his older sibs, and can actually wait to take turns and interact appropriately in most instances. One of his favorite things to do is to “ride” with Julia on a little scooter that his grandparents bought him; she uses her feet to propel it quickly around the house, which of course he loves; he grins and shouts, “Dad! Dad! Bye!”

His interaction with Matthew is much more limited, probably because their relationship is so ambivalent, and he knows Matthew’s ability to understand and help him is very limited. As far as I know, he does not interact with other kids at school on a regular, first-name basis.

Over Thanksgiving he got to meet his eighteen cousins on my side of the family…all at once, which was a little overwhelming…but the Gundrum boys took him under their wing and helped him to play some football, which he really enjoyed.

Overall, his social interaction is warm and friendly, and seems pretty typical for a kid his age, if you account for the impact of his orphanage experience. His psychologist and therapist are both extremely pleased with his level of attachment and social interaction. “Amazing” and “awesome” and “wonderful” are words they use a lot.

Physical/mobility

Thanks to the school district and friends with kids with disabilities, Alex has been accumulating a small fleet of mobility devices—a tricycle, a walker, two different wheelchairs, and a mobile stander. His current obsession is with the small wheelchair that he can use to get around the house. Because that wheelchair fits into our van easily, he also takes it out and about.

Getting PCA services at home as well as physical therapy every day at school has meant that Alex spends most days doing lots and lots of exercising and movement, and that’s showed in terms of his ability to sit up, stand up, and otherwise do what he wants physically.

And…I am going to have to say, “To Be Continued,” because it’s late and I need to get to bed!