It’s been a while since the last update but we’ve had so many follow-up appts that each time I thought to do an update it was like, “well he’s got another appt in two days so why not wait?” Well if I keep up that attitude I’ll never get this done, so just means I’ll have another update in my future!
Course now the issue is, where do I start?! Guess the 18 month check-up would be the best place. As of May, Gavin has grown 2.5 inches, gained 2lbs and his head has grown (can’t remember exact number but that it grew is all that matters.) Guess calorie loading is working!! His pediatrician is very happy with his progress and while he continues on his own growth curve, the fact that he IS still growing (and not plateauing) is great. She did refer us for a sleep study (happening this Monday) as we think he has sleep apnea (very common in kids with CP). Lucky for me, Colin gets to spend the night with him in the hospital
We also had a follow-up with his “medicine” doc – the one that prescribed the valium. He was extremely happy to see how well Gavin was doing with the medication and has said we can move forward with daily doses. Should note that we HAVE seen differences in Gavin since giving him the meds. Nothing earth shattering or life altering (at this point) but enough that it makes arm/hand movements slightly easier. You can see more voluntary movements vs. the involuntary “jerky” movements he makes. And luckily side effects are very minimal. So we’ll stay on this low dose for 3 months until his next check up and see what’s next.
Some of you may have already seen a recent (ish) post that I made on FB – Gavin is learning to use a straw! This is HUGE! He understands what he’s supposed to do and it working super hard to make his mouth do what he wants. If you weren’t aware, your mouth is one of the most complicated muscles in your body. Figuring out how to use it in conjunction with your tongue is actually very difficult – and something we all take for granted. For Gavin, it takes concentrated effort to use his mouth and tongue at the same time and to control the “thrust” motion of his tongue when eating or drinking.
Yesterday both boys had their neonatal follow-up clinic. Spencer will likely be kicked from the program at their next appt in 6 months as his development level is inline with his chronological age. Needless to say he impressed the docs and OT. While Gavin can’t be measured by the same test (it’s not an accurate test for those with gross/fine motor problems i.e. those with CP) his doc has seen HUGE improvements since our last visit 3 months ago. Since he was on his meds, his movements were more “fluid” (for Gavin), his hands were open, his head control stronger and his drive to move and crawl was strong as ever.
In addition to his sleep study, he also has an appt with Shriner’s Hospital next Thursday for a device fitting. We’re hoping to get him a walker and hopefully and Upsee!!! (FYI and Upsee is a new device that just came over from Britain. The parent wears a harness around the waist that the child fits into thereby enabling the child to experience walking.) It’s super cool. While there we’ll look at other options that might help him with various movements.
Through all these appts, Gavin remains a happy and healthy little guy which is honestly all I can ask. His bright smile and infectious laughter bring smiles to everyone he encounters.
Till the next update – hope you are all enjoying the warmer weather!