Over the last two weeks, Colten has met three new specialists he will be working with: teacher, physical therapist, and occupational therapist. Based on the goals of his IFSP, he will meet with the teacher once a month at our home and she will evaluate his social/emotional/cognitive milestones and work with him and us to continue progressing him along the current trends he is showing (on target for his age). The physical therapist will see him every other week at one of the ISD buildings to work on large/gross motor skills and the occupational therapist will see him in our home the opposite weeks to work on small/fine motor skills.
The teacher visited about two weeks ago and brought a couple evaluation tools and some toys. She spent a good part of the time observing, asking questions and engaging Colten in play while talking and singing with him. She provided me with some additional playtime suggestions and Colten was happy as a clam while she was over. A couple days later we met the physical therapist (PT) and spent about an hour with her. She was very impressed with Colten’s movement and is anxious to get him into more standing opportunities and eventually, of course, trying to take steps. Colten enjoyed a new experience of knee-walking behind a rolling cart! She would like to see him wearing his AFOs more often – especially the right foot one, as she wants us to avoid over-stretching those ligaments. Once ligaments get overstretched, there’s no way to really get them back, as far as we understand. We have mixed emotions about this because when Colten is in his AFOs, he moves around so much less than without his AFOs, and pulls to stand more without them. For now, we’re giving Colten a little more time in the right AFO to see how he does. Last up to meet was the occupational therapist (OT). When she came, she was so pleased with Colten’s fine motor skills, she will end up working more on environmental skills for him – getting up and down from steps, “fixing” his feet when he transitions (they get caught and bent under him in very painful-looking ways!), some language, etc…
So we add those specialists to his regular weekly physical therapy session and we’re at a base of two appointments each week, sometimes three, then more if we throw some Ann Arbor trips into the mix, such as this week! Colten’s appointment at the U of M Kellogg Eye Center was Wednesday morning. We were referred to the eye doctor back in November due to the floating of his left eye. We have noticed less floating recently but it’s so hard to get appointments in a timely manner we figured it wouldn’t hurt to go through with the appointment just to make sure we had nothing to worry about. And we have nothing to worry about for now! The doctor would like to see him back in about four months if the floating has not completely gone away or it gets worse.
On the helmet front, we’re making progress! If you’ve been following the helmet saga, this is helmet #2. The first helmet that Colten had from about 9 or 10 months until just over a year was open up top. While it helped correct some unevenness, it did not help widen the back of his head like we hoped. Instead his head started to grow up through the opening which meant we had to discontinue use. After discussion with various doctors, it was determined to give a fully closed helmet a shot for about 2-3 months, check for progress and either discontinue use or keep it on for another 2-3 months. We are happy to say this helmet does in fact seem to be working! Granted, knowing that, it looks like Colten will probably be in the helmet until late spring.
Here’s a picture from before the first helmet, then after the first helmet, and now less than one month into the new helmet. His head is still long and narrow, but it’s finally getting fuller in the back than the front.
Tuesday of this week was a big PT session for Colten. It was arranged for the home medical supply rep to join us at the PT session to put Colten in a demo dynamic stander. In short, it’s a wheelchair you stand in instead of sit. I had looked at the stander online, I’ve seen videos of other kids in them and there’s a part of me that is excited for him to have another option for mobility. What I didn’t expect was the other part of me that welled up with tears when I saw the stander being rolled in. There was that part of me that was sad that my little boy couldn’t stand up on his own yet or take his own steps, and there was no telling when he might do those things and what sort of assistance he would even need to do them. The sadness passed quickly as I recounted to the physical therapist how Colten crawled up an entire flight of stairs at home earlier that day (under closer supervision from Daddy, and encouragement from cheerleaders Parker and Max)!
The supply rep then showed me around the mobile stander. It has a tray attachment, quick-release large wheels (the ones used for him to wheel himself), a torso pad, butt pad, knee and ankle straps. Let me tell you, it is quite a contraption! I’m sure it gets easier as you get used to it but it certainly took all three of us to get Colten strapped in! Since he only really supports himself when he can push up and use his torso, he was NOT helpful during the strapping in which made the whole thing more difficult. Colten was probably also hungry, not happy that I woke him up from his nap in the car, and really wanted to move around freely, not be strapped into some new-fangled device. All of that combined to a very unhappy boy. He was only in the stander for about five minutes and screamed and cried for four of those. Once we had him strapped in and pushed him around, he settled down just fine. Having experience with wheeling himself in the Bumbo wheelchair a family passed on to us, he knew just what to do in the mobile stander and for about 30 seconds, showed off his skills [ watch video HERE ]. The torso pad is a bit high for him but he actually will need a size up because then the wheels will be closer to his hands – he is at the top of the height chart for this size stander.
The hard things about the stander…
– While he can be more “mobile” over long distances, he is strapped in and cannot get himself in/out.
– It does not have enough support; his legs are just too weak to hold his whole body up without the aid of his arms pushing.
– It forces him into a position that can be uncomfortable for him (legs straight out under him) due to contractures in his hip flexors.
The good things about the stander…
– He can be more mobile over longer distances.
– We can add a bike seat sort of thing that will help hold up more of his weight as he builds up to standing without it.
– It forces him into a position that he needs to be in to help stretch those contractures.
– Research is showing that standing has a variety of medical benefits, including improved circulation and digestion (both of which he needs improved!), increased bone density (remember the treadmill study he was in?!), enhanced social skills (puts people at the eye-level of their peers), and more.
So, we are getting one ordered – a size larger than the one we got to try out. It should last him at least 2 years. It could take a few months to actually get it but the demo is staying at the PTs office so he will get some practice time in it each week. Hopefully by the time we get his, it will be a more comfortable experience for him.
That’s it for now… before we sign off though we want to send a big huge birthday kiss to Colten’s big brother, Maxson! He turns 3 on Thursday! Maxson’s nickname for Colten is “Colty” and he loves playing with him, except when Colten takes his cars. He gets so excited to see Colten every morning and calls him “my baby” (I have to remind him that Colten is MY baby!). They enjoy wrestling together and screaming contests. Max usually wins 🙂 Max is excited about going to preschool in the fall, but not excited about wearing underwear when he’s 3. He has a very creative, dramatic mind, and a rough and tumble body. He has so much love for his two brothers – at one point he requested I have “another Colten baby”. He has the most adorable expressions and makes us laugh every day! His favorite color is pink, he wore Richard’s childhood Superman cape (handmade by one of Richard’s grandmas) every day for MONTHS over the summer and fall, he comes and cuddles with us every single morning (sometimes a little earlier than morning), and I think he will grow up to eat us out of house and home! So happy 3rd birthday Maxson, our own little King of the Wild Things!