I remember this moment like it was yesterday... dragging his feet back and forth making a pattern in the those jagged rocks. Jack was just 21 months old then and only beginning to bear weight on those weak little legs on his. I remember wondering how long it would be until we saw those shaky first steps, will it happen before his 2nd Birthday, his 3rd? when will we see him run like a typical toddler or play a good game of tag with his brothers...
But never did the thought run through my head, once gained that he would ever lose these skills or find himself still struggling years later... and why would I, all we knew at that time is he was born with low tone, had some sensory and feeding issues, but with some therapy our son would eventually catch up and everything would be ok...sigh, so why are we here, years later with this devastating diagnoses and a feeding tube keeping him alive...is it too late to go back to the "everything would be ok" part?
Jack has had a rough few days... falling down several times, and even injuring his right foot Sunday evening. Monday morning he could barely walk on it, needing to be carried to his classroom. I wanted to keep him home but losing so many school days because of the Flu last week, I felt it was too important to see if things improved over the day. Thankfully he was able to hobble around enough to stay in class. Today he fell again at school, doing the splits during recess and landing him in the nurses office covered in mud. Its like we're seeing a new pattern with him, not as stable and having too many falls, especially at school.
I guess this just brings us back to our appts. we had last week and what I was told we may expect in the future regarding Jacks mobility... Im really not sure what to make of it. Is this entirely the hip thing or more so a balance problem. Maybe both. I watched him carefully tonight, and notice him losing his footing more than once. In the past week, he's come up to me saying, "I feel funny" and has even uttered the word dizzy a couple times but I'm not sure this is related or not.
I received the PT's outpatient note in the mail today... Besides her mentioning the powerchair again and his obvious low tone, she added a lot of numbers of measurements that didnt make a lot of sense to me. I'm adding few assessments she made that day-
"Jack's gait exibits a decreased stance on the left with a slight increase in the internal rotation on the left. He demostrates decreased endurance with his walking" On decending stairs, with a step to step pattern, almost falling and catching his feet with each step."
"He demonstrates a painful left hip, especially at the end ranges of motion. He has lax joints throughout. Jack demonstrates decreased strength, especially around the hip and knees today. Standing balance is considerably challenging for Jack. Jack stands with a sway back, bilateral knee hyperextension, slight calcaneal valgus with mild pronation.
I still dont know much about the therapy they wrote the referral for, as Im not sure they will have any sessions available for late afternoons. I cant have him miss several school hours. Im still waiting to see if he'll be put on a waiting list or what they will have available to fit his school schedule. Both the Physiatrist and PT believes therapy is the only answer, to strengthen his hips and knees to avoid pain and possibly these falls. I pray theyre right, its not easy watching him struggle with a milestone I thought we would never have to revisit.
































































































