Sunday, September 12, 2010

Early Intervention Program and Other Worries of a Mama to a boy who had a Stroke

September 12, 2010

As soon as Mikail experienced his stroke, our pediatrician put in an immediate referral for Physical Therapy, Occupational Therapy, and the Early Intervention Program. We have been attending PT and OT for months now and it is awesome. The Early Intervention Program was something I knew very little about and since we were put on the waiting list, I still didn't know much about it until this past week when we had our first consultation.

The EIP Consultant meets with you wherever you feel most comfortable meeting. A coffee shop, their offices, or your own home. I decided it would be nice if she came to our place, so she did and it was amazing. Miss M (as I will call her), is a young Mom as well and has her B. Ed. and her BA in Psychology. She has taught grade one so we have a lot in common. We basically just visited. I told her our story and she filled out a few pages in regards to getting the best intervention for Mikail. She was shocked when Mikail woke up from his nap and she got to meet him. He was NOT the little boy she had expected to meet, according to the file that had been filed by the pediatrician. That makes sense, since he referred Mikail just after his stroke and before we knew the extent of the brain damage done by the stroke. She thought she was going to meet a little boy on oxygen with a feeding tube who was completely limp. Mikail has proven everyone wrong in every possible way, and we are just fine with that.

I asked her if this was a problem--that perhaps there were other families that might need this intervention more than Mikail does. She said we were referred and if we would like the resources etc. that they have available, we should take advantage of it. I said that we would like to stick with it, because in reality, who knows if Mikail will continue to meet his developmental milestones as he has so far. We trust he will, but if he doesn't it would be nice to have that extra bit of input. I asked her if there was anything she could do at this point to help us and she said that there are always things we can do and that she would love to come every week or two for some play time with Mikail and then we can watch his progress more closely. LOVE IT. So, next week she will come and bring some toys and do a more in depth assessment of his motor skills etc. and then she can show us more detailed activities we can do with him to help him develop in any areas that might be weak. PERFECT.

Of course, Mikail is only 5 months old but I am already thinking about Speech and Language. Is he developing like 'normal' 5 month olds in this area? I asked Miss M about this and she said she would bring a DVD for Mikail to watch to help him along in his 'babbling'. Right now his sounds are very gutteral (is that even a word?). They are very much at the back of his throat and limited to mostly Mmmmm sounds and the gutteral sounds.

And then there is the thing of rolling over. He isn't. Is this the point where he starts to fall back on his development? I know I shouldn't worry because the continuum of when kids do these things is all over the map, but with his history I worry.
I know.
I know.
Worry gets us nowhere.
I mentioned my concern to Dr. Langer and he said that I was right. Babies are all over the map when it comes to rolling over and with the whole 'back to sleep campaign' it is taking babies longer to roll over because they don't develop their upper body strength as quickly as babies who sleep on their tummies. So, he is not concerned at all. Sigh. We will continue the tummy time and encouraging him to roll over, but he will get there in his own little time, right?

In other news...Mikail is down to 1 mL of Phenobarbital every morning and there are NO signs of seizures. Praise the Lord. Less than two weeks of medication left and then he is med free...for the first time in his little life. Praying that he continues to do well coming off of it and that he remains seizure free the rest of his life.

So, there's tons of good stuff happening around here for Mikail right now. Many great milestones he is reaching and Mama just needs to chill out and let him get to those milestones in his own time.


Anonymous said...

Out of curiosity, how long were on the EIP waiting list? We're on it now too, and apparently there are 25 kids on the waiting list....

Anonymous said...

were you*

Iris said...

We were on the waiting list for just over 5 months, but since we had tapped into Physio and Occupational Therapy already it wasn't that huge a deal. We were on the right track already. Our EIP worker just checks developmental achievements(which they do at PT and OT anyhow) and answer any questions and help with things like FSCD Funding etc if we want the help. I think if restbite (sp?) is needed the work on that as well, but since Mikail's needs aren't as high as they were initially projected we don't need as much intervention. The EIP workers are super nice and helpful!