We’ve been busy. Clearly, because it’s taken me this long to post any kind of update. It’s also probably a little bit of self-preservation after two and a half months of intense trauma and focus.
It feels unbelievably normal to be home. And it’s simultaneously a huge relief.
We’ve spent a ton of time reuniting with family and a few friends, with lots more on the list.
And most importantly Jack is doing great!
The last month in a nutshell as it relates to Jack’s recovery:
Thanks to the support we received through the GoFundMe campaign, we’ve set him up for regular private PT at Kid’s Physio which has been fantastic. We really love his therapist. I have found she really notices the slight changes he makes in his motor skills, provides us with fantastic exercises and things to work on with him and Matt also commented on how great she is at communicating both with him and us. She has been floored at how much stronger he is each week. It’s always super encouraging to go to a physio session with Jack and hear her feedback. We’ve also accessed naturopathic and osteopathic complementary care.
Jack has been accepted into the Community Brain Injury Program which has already allowed us to access regular OT sessions and tomorrow he will meet with a Speech Pathologist for the first time. We’ve also been referred to Sunny Hill for adaptive equipment and swallow/feeding assessments.
Yesterday we finally got in to see his pediatrician which is huge because it’s started the ball rolling for all of the referrals to specialists we need: radiologists, pediatric neurologist, a biomedical team for metabolic disorders and an ear, nose, throat doctor. And now the waiting game begins. So for now we just power ahead with therapy.
As for Jack:
Generally, this boy is killing it.
He is still army crawling but he ain’t messing around. He moves quickly, and has great bilateral movement. He has also started to lift his bum more while crawling. He is pulling himself up to his knees regularly now on certain lower furniture. And sometimes tries to stand but mostly still needs help to get there. He can push himself up from a crawl position to his knees (this is a recent development within the last few days!!) and from there he sort of straightens one leg to come into a sitting position. He LOVES to be standing and can do so really well in a passive stand on a couch and as long we’re behind him can do so on his own while holding onto furniture. When someone holds his hands he is now trying to take steps and has been alternating well and rarely drags his feet.
It’s been the general consensus of his medical team that he is doing just fine from a cognitive and language standpoint. He talks. All. Day. Long. As in from 5am until 8pm this boy is babbling away. He’s developed more words, more animal sounds and has recently taken to giving his affirmative answer to “would you like a snack?” with a solid nod and a definitive “yeahhh!”
Fine motor has been improving as has his left-hand play and strength. He sometimes lifts both hands above his head simultaneously which to me signals how much stronger he is getting. Mostly he still avoids two-handed play but will easily hold on to furniture with one hand while playing with the other.
And this kid has an appetite. Which is good because I’m pretty sure he burns it as fast as he gets it in. Pretty much every care-professional we’ve had since we’ve been home has commented on Jack’s determination. I don’t think “give up” exists in his world.