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!