Thursday, February 10, 2011

New treatments and therapies.

We met with Henry's speech therapist last week. We're going to table the idea of using the PODS until we're clear about his vision. Instead, we'll use his hands, left is yes and right is no. We'll ask him a question and look for that postive response that he gives with a smile, and teach him to move his left hand in response as well. His right hand is for a negative response.
"Henry, do you want to watch videos with daddy?" Henry smiles - we tap his left hand on to the palm of ours and say "Yes, you want to watch videos with daddy."
Our hope is that he'll eventually be able to use switches and some recorded options to tell us what he needs.

We met with Henry's OT this week. We're starting to slowly, 1ml at a time, introduce oral feedings. We'll see how well he tolerates it. So far, he's had a couple of tastes of Odwalla Mango.

We also went to meet Dafni at the prosthetics clinic this week. Henry finally got his braces. He needs to wear them for ten minutes at a time, twice a day for a few days, and then we build up to a half hour and then to an hour twice a day. They are meant to be used with the stander.
Jodi came for the stander this week, because another family wanted to try it out. So we may end up needing to share it with another family until ECCares can/will order another. I looked up the cost of a stander... it's staggering.
Ours is lime green.

Next week Henry meets with an eye doctor. We're hoping for some insight into his vision disabilities. We'd like a confirmation of CVI so that we can start him on a treatment plan for that too.
We see Wadie next week for a follow up on the Gtube, too. We also have an appointment for Lewis and Anastasia. Next week is going to be busy, and we need to fit a birthday party in there somewhere!

Physical therapy with Dafni starts back up in a week and half. I'm not sure how well it'll go. He's been so stressed, recovering from the Gtube surgery.

We have a meeting scheduled at the feeding clinic in March. We'll meet with a nutritionist and another OT. I'm certain that we'll only take instruction from the nutritionist...

So, as we move into the third year of Henry's life, we'll have
2 Physical therapists
and educational specialist
a neurologist
a vision specialist
an occupational therapist
an orthodics doctor
a speech therapist
and a General Practitioner...

We are lucky to have so many skilled people to assist Henry and his growth... but we need to meet some regular folk!  


  1. wow, so much to do! one baby step at a time (or two or three sometimes). don't forget to fit in support for each other, professional or otherwise, in there somewhere. :>>)) so proud of you guys... i'm sure it must feel like "your 19th nervous breakdown" sometimes. sending lots of love. xoxoxoxooxxoxoxoxoxo

  2. Well Henry might not walk like normal kids,...but he is taking his steps with your help. Just look how far he's come and in 2 years! And him being Stressed! The little guy had major surgery! He's allowed to be stressed... and as long as mom and dad fell stress...he will to. You know he senses what your feeling. If you guys start to relax he will too!

  3. Lovin you.....give Henry a big squishy hug from meeeee.....XOXOXOXO <3<3<3