We had our 6 month EI checkup today.  We talked about progress, goals, and next steps with equipment.  So this seems like a good time to update you as well!

Currently we receive speech, vision, and physical therapy through the state based Early Intervention Services.  The assessments today were mixed.

For speech, we’ve made great progress on spoon feeding.  The boys are now enjoying a snack each day!  The therapist admits her hands are a bit tied in pushing the feeding given that the boys are reliant upon a G-tube.  And she can’t do much that we aren’t already doing.  So we’ve changed their appointment structure to be as needed.  D and I will continue to work on oral stim, and spoon feeding.  Recent tools in this area include the suction machine, (which has come in very handy on a few bad days).  I’ve also acquired a few gadgets to help provide different textures to their mouth.  Some of them include:

Duo Spoons

NUK Brush

And a good old vibrating toothbrush!

Vision Therapy is a tough one.  It is very hard to assess the boys’ vision potential.  And it is even harder to predict when they will be alert enough to participate in therapy.  We’re going to continue as is for a while, with the hopes that with frequency, we’ll occasionally get a solid visit. Recent gadgets include:

A light box (on loan from EI)

A little bear sees IPAD app

A Power Point based on CVI colors and shapes made by Aunt Crystal

Physical Therapy remains a top priority for me.  We spend a lot of time doing stretches, rolls, assisted sitting, tummy time, and anything else we can think of.  Having D with the boys throughout the day has made a huge improvement because we can capitalize on their wake times, whenever they may occur.  The therapist hasn’t seen improvements that can be documented, and can’t justify keeping the frequency of visits we’ve been having (weekly).  BUT…we will not let that discourage us.  We may not have checked off official boxes, but they are doing several things better now than they were a few months ago.  We are in a game of inches, not miles.  And realistically it is on D and me to incorporate therapy in to their daily routine, more than it is on a therapist to make an impact.  We need to continue to observe and learn from everyone we can, then put it in to our daily lives.  The repetition, the routine, making it fun and part of the normal day is key.

No new equipment lately, but we still have mats, wedges, and rolls.

We are looking in to a stander with the help of EI.

We are looking in to next steps in seating as they will soon outgrow their special tomato seat, hopefully also through EI.

The Faith vs. Folly part comes in trying to balance what is a reasonable expectation vs. a goal that isn’t worthwhile.  Some goals are obvious.  I want their days to be full of love.  I want to protect them and keep them safe and healthy to the extent I can.   I want them to be comfortable and happy.  But I also want them to reach their full potential, whatever that potential may be. I know I run the risk of not seeing the forest for the trees.  I’d rather say I can’t see the sky for the stars.  So aim for the sky we will.

Here’s a (sideways) video of Nolan, displaying improved head control with D holding his hands at midline.  He isn’t falling asleep by the way.  His eyes are closed often, particularly if he is trying to concentrate.  🙂  At the end he seems mad Landon keeps trying to distract him.  😉

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