EI Meeting

Our EI meeting went fairly well as we are going to start Oliver on more therapies and see how he tolerates them. He'll have PT and OT once per week each and then Speech twice a week with one of the sessions focusing on feeding. We are also going to have him evaluated for vision (finally, should have a phone call by the end of this week) and by a developmental therapist. We'll be meeting with a social worker once per month to help navigate resources available in the city/state.

A year ago , when Oliver was diagnosed, I never would have imagined a meeting in which I blatantly discussed the disabilities of my child and what we can do to make it easier on all of us. Even as I was sitting in the meeting looking around at all of the therapists, I was thinking to myself "I can't believe this is my life". It took a lot for me to be positive and ask the right questions and write down the tasks I need to complete without breaking down into tears.

I am learning more about navigating the special needs world and I'm finding that a lot of it is unfair. Kids that need so much receive so little. It really amazes me. I hope that we're lucky enough on our journey to get what we need for Oliver with minimal fighting but I think many things will be a battle.

The good news is that Oliver's bath chair has been ordered. The bad news is they never did order more supportive seating for him for meals and therapy. So we're going to go through the physiatrist at RIC and see if she can help us at least get him fitted for all of the equipment he needs and then we can try and order it through EI even if it takes a long time to arrive.

He has been fairly stable health-wise and we are so grateful for that. He's been teething up a storm and now has 12 teeth! The seizure count is lower the past 2 months and we're hoping that trend continues. We have about a month left on Vigabatrin and then he'll be seizure med free. We're crossing our fingers we can get to that point and see how he does without meds. During the wean we were hoping to see more alertness and strength. I'm a bit disappointed that we haven't as it means that a lot of his delays are likely caused by the CDG and not so much the medication. We'll see how his next EEG looks, hopefully he'll have one in the next two months.

On the GI front things are about the same though he seems to be doing better having bowel movements every day or every other day without help from suppositories. This is since starting the carnitor supplement. We hope to try the motility meds in May and see if that gives him the relief from the awful reflux that keeps him unable to eat most foods.

Tobin is happy, healthy, thriving and looking forward to warmer weather so he can go to the park and the beach. We consistently have temps in the 30s and we're all ready for spring to finally arrive!