Mixing It Up

Playing in the water at the Peggy Noteabart Nature Museum Aleck is having a great time. He loves to laugh.

Lately I’ve been looking into other resources for Aleck’s therapy schedule, mainly Shriner’s as an alternate option.  Their local branch is only about 5 miles from our home and I’ve been very impressed with the therapists I’ve met there.  When Aleck was a baby we inquired about their therapy program but at that point they only offered therapy to inpatients.  We’ve been on the waiting list since September and as we were working out the nitty gritty of Aleck’s schedule I mentioned, as I had many times, that we have to work around his therapy schedule at the RIC.  Suddenly the woman I’m on the phone with, the same person I’ve been speaking with for 5 months, lets me know that they won’t take Aleck for outpatient therapy because he’s already getting therapy through another hospital.  Wow, this would have been great information back in September when I first made the call.  I’m always open about our relationship with the RIC and even told my contact then that Aleck was about to start hydro therapy there and I wouldn’t want to start with Shriner’s until the hydro therapy was over.  She turned me over to her supervisor, finally, and we were able to work out an alternate solution.

We have no intentions of giving up our time slots and our relationship with the RIC; that’s where his surgeons are, that’s where his orthotist is, it’s home base for our entire team and they can talk to each other easily and we can push to get things done faster since everyone is there.  However Shriner’s policy is that they don’t take kids who are getting therapy in other places, they only take kids for one therapy session a week (he could have one PT and one OT) and the sessions aren’t ongoing, they are only for twelve weeks.  In our case it certainly wouldn’t make sense to lose the care we are getting at the RIC in hopes that Shriner’s may be better so the therapy supervisor and I worked together and came up with a fantastic solution, I hope. Next week Aleck is taking a week off of the RIC and off of preschool to go to Shriner’s and do at least 2 therapy sessions a day for at least 5 days.  I’m pushing for three and would even forgo his regular nap schedule to get as much out of this opportunity as possible.  After all, our last visit with a therapist at Shriner’s sparked a ton of change to Aleck’s lifestyle, imagine what a week of tough love could do.  My main focus will be on his transitions; sitting up to lying down, lying down to sitting up, and really engaging his upper body more in his day to day activities; holding his sippy cup, taking off his coat.  Right now my theory is that part of the reason Aleck isn’t interested in potty training is because he’s still not comfortable going from a standing position to sitting down, and vice versa.  Hopefully this intensive program will be just what we need to help propel Aleck over this plateau and get us back on the track to making real physical progress.

The timing of all of this couldn’t be better.  I’ve been very frustrated with our therapy program at the RIC and found myself on more than one occasion looking around for a therapy manager or some person in any management position to talk to about my grievances, most of them centering on Aleck’s OT situation.  At the end of July we had lost his rockstar OT when she went on maternity leave and then gave birth to her beautiful baby girl.  We tried waiting out the three months with the new person they hired and found ourselves scrambling to get him the care he needed, the splints he needed.  Even after three months of bi-weekly sessions this woman just couldn’t connect to Aleck, couldn’t engage him, and we would have to leave the room during sessions otherwise he would repeatedly run to us for hugs and attention during the session, a behavior he’s never displayed.  I was trying so desperately to be patient but finally lost it when it was November, well past three months of maternity leave, and no one had any answers on whether or not our OT was coming back.  Then both Craig and my mom said the same thing, as they so often do (unlike many women, I really did marry my mother), “This is a complete waste of time, she can’t engage him.  He engages every single person he sees when walking into therapy and knows the name of every therapist on the floor.  Engaging Aleck is not a tough job.” I knew she wasn’t working, I’d known that for a while, I was trying to wait for our OT to come back. This is a boy who can start a conversation with a cute 28 year-old woman at a house party on a Saturday night; we should have no problems getting him to engage with his OT, about the same age and just as cute.

So I kicked up a fit and finally got the attention of the head of outpatient therapy who explained that they were in the process of hiring a new therapy manager and finding new OTs.  In the meantime they offered us the head of pediatric inpatient therapy who is also an excellent OT.  We knew her from when we were inpatients, was never really impressed with her as a therapy manager, but she was great with Aleck and reaffirmed that we really had been wasting our time with this other OT.  But then she just got a promotion, a job in another location, and they’ve pulled someone else from the inpatient floor to work with Aleck.  We’ve only been with her, OT #3 in the last few months, for a few sessions but she’s a great fit.  Engaging, creative, and on the ball, working to make sure we are going over our goals for Aleck and moving in the right direction.  She’s even blocked off time in her schedule to come with us to see his orthotist to discuss alternate options to help his elbows.  Our new OT is also concerned that there might not be enough room between his joints for serial casting to be a success and suggested getting t X-rays ordered so we can get a clearer picture of his arms to better plan for his treatment.  One idea is a splint he’d wear for short periods of time during the day that we would be able to keep cranking into a bent position.  Of course my stomach drops, both at the idea of X-raying his arms since I often have to hold him upside down and screaming to get the angle they need, and at the idea of more equipment, something new to get adjusted to for everyone in the family.  That’s the flip-side to new ideas, creative and more aggressive treatments; the potential results are exciting but the paths to get there come with a whole new set of adaptations to our already complicated daily schedules.

In other news, Aleck was recently administered his second round of Botox.  Because Aleck is on All Kids / Medicaid instead of BlueCross BlueShield he was approved for another round of Botox treatments in his triceps (hooray).  Again we are hoping the Botox helps to freeze the triceps a bit, allowing for his biceps to activate more freely, and are anxious to see how much more range of motion we can get in his arms.  However, since we have no upcoming surgeries (woooo hooo), he was awake for the injections and it wasn’t pretty.  Two shots in each arm and he was hysterically crying long after the needle had left his arm.  We talked at length about how to prepare Aleck for the injections and in the end settled on this; we are going to the RIC to see Dr. Gaebler, she will be giving you medicine in your triceps to help your arms bend better.  And Aleck replied, “Triceps are muscles, not bones.” Amazing.  We should be seeing the results of the Botox soon and we are really excited to see what they can get out of him at Shriner’s.  Hopefully this can help propel Aleck to the next level of self-sufficiency like last time.  It’s time for him to start holding that sippy cup all by himself.

Aleck and his daddy playing in the water at Peggy Noteabart Nature Museum.


One Reply to “Mixing It Up”

  1. Good read about the adventures of Aleck and his team led by parents who know how to get the best for the amazing 3 year old. The one who knows triceps are muscles.

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