So far so good, the first day or so was a little rocky. I had a couple problems trying to get it on right. First try took about 40 minutes of tinkering. Now, I can slap that puppy on in about 5 or maybe a little less. it is difficult to put on considering Caleb has very limited use and I can't have him help.
It just looks complicated!
when we first started Caleb was only able to manage a pincher grasp using his index finger and thumb. None of his other fingers wanted to cooperate. Now day 5 he is using all the way up to his ring finger. I consider that a pretty remarkable improvement for 5 days worth of use!
This photo is from day 1 I will take some now that he can use more fingers
The amount of his success seems to be directly correlated to how awake and alert he is. I did 2 sessions on Saturday, in which he grasped and released 102 balls. We start out making him drop them in a box on the floor, then we move it up to waist height, then I move it up to chest high. No problem for him! He actually was pretty much throwing them in the box and giggling at his success. Sunday was totally different. He usually gets tired fro his seizure meds mid around noon.He told me he wasn't tired, so we decided to give it a go. He was only able to grasp and release maybe 10 balls. He was getting frustrated and that seemed to compound the problem. We had the same issue that evening so we just called it a day. Monday however, I made him take a nap after school, and then in one session he moved 60 balls! So tired = no saebo action for Caleb.
I am going to try and record some of his OT session on Thursday. If we actually get down to it anyway. The past couple sessions have been spent adjusting it to Calebs hand. Which is perfectly fine, because the more fine tuned it is to him the better the end result.So Thursday we should have more to report. Catch up with you all then :)
My son Caleb was born a month early. At a whopping 7lbs 3oz he was a big guy for as soon as he came into the world.He was born via c-section, and was the most perfect thing I had ever seen. At first Caleb seemed like your average newborn, eating,sleeping, pooping. Once he gained a little control over his head he would fight against me and push his lead into odd angles while being held, or siiting in his car seat. I remember being told that i needed to support his head better, but the thing is I was, it was Caleb forcing his head in these positions. My great aunt noticed the day she met him and exclaimed, "he is going to be an astronaut, he is always looking for the stars!"
At around 4 months old I noticed that he would only reach for toys using his left hand.He was able to roll over, but only to one side. It was at his well baby check that month that I mentioned it to his pediatrician. I was told not to worry, that it would only be a concern if he continued to do so. At the next couple checks again, blown off by the doctor as first time mom paranoia.I was told he was showing handedness early. Finally, at his first year check up when he couldn't crawl or sit up right on his own, I demanded a referral to a Neurologist. This is where his journey began. At 13 months old Caleb was diagnosed as having a neonatal stroke. I was floored. A stroke? I thought strokes only happened to the elderly, or at least only to adults, but to have one before you came in to the world?! That seemed impossible, but it is very possible. Calebs pediatrician had never even heard of a neonatal stroke. Now that the doctor is educated about it, he has tried to raise awareness by having Caleb and I speak to interns and tell them Calebs story.
From that point Caleb started Physical Therapy, Occupational Therapy, and Speech Therapy. He did these for about 3 years. the longest one he has attended is Occupational Therapy. He did this until he was in Kindergarten, and that was when the new OT he was seeing decided that Caleb had "plateaued" and no longer was benefiting from the therapy. We were told to wait a year or so, and then to be reevaluated.In the meantime he did receive OT at school. Life happened and we got so busy that it took a little more than a year to get back into the swing of things. This summer I decided to get our lives back on the therapy track.
Now we are back in therapy, and Caleb is about to start a new therapy using something called a Saeboflex. It is essentially a spring loaded hand that gives him resistance while grasping an object, and helps him to open his hand back up.This is what it looks like
Last week we received the device and spent the day at therapy fine tuning it to fit Calebs hand. Today we will use it for the first time, for actual therapy purposes. Caleb loves his new "terminator hand", I hope his enthusiasm lasts after he realizes it is hard work.I will update this blog weekly so that we can see how much progress he makes. I am hoping that if more insurance companies see how much this device can help they will be more likely to cover the cost of it for future stroke survivors like Caleb.
