Hi Everyone,

We have some vision updates!!  As a quick recap, back in January, Maddie had her visit from the VA state department for the visually impaired and Maddie’s condition/diagnosis was described as cortical visual impairment (CVI).  CVI is visual impairment due to a problem with the brain and not the eyes.  Nothing is structurally wrong with Maddie’s eyes, but the brain doesn’t understand what is being seen so she doesn’t have any “functional” vision.  Essentially, she doesn’t know what she’s seeing until and if the pathways between her eyes and brain re-form.  The promising thing about CVI is that with proper and early intervention, there is room for improvement.

The County’s Early Intervention program currently doesn’t have a vision therapist.  However, through our occupational therapist, we were able to get in contact with a local expert (whose Ph.D. dissertation was CVI-related) who regularly provides therapy to children with CVI.  Long story short, she was willing to come out and meet Maddie even though she wasn’t contracted with our county.  She then offered to work with Maddie if the county was willing and praise God(!) everything worked out and we should be able to start vision therapy in the next few weeks!!!

Currently, she seems to have some visual responses to items that are shiny (see her looking at Bill’s borrowed hoodie below) and/or objects that are of the fuchsia/magenta color family.

Our goal is to get her to consistently see familiar items and to eventually associate various objects with different parts of her day.  Below is Abby helping with some of Maddie’s vision exercises!

Maddie has continued to try the gate trainer during her physical therapy sessions.  You can see from the pictures below, she’s better at keeping her head up on her own and using the armrests.

       

We’ve also been practicing cause and effect with switch toys where if Maddie presses/kicks a button (the large yellow/red circle), some action will result (e.g. music will play, toy will spin, etc.)

       

       

Maddie’s fine motor skills also seem to be a bit more controlled and purposeful.  Her left hand used to reach up for her bottle and immediately pull it out, but she has more control now and is able to steadily hold it (although she’s still not quite strong enough to hold it up on her own).

At the advice of our physical therapist, Maddie started seeing an orthopedist and had her first visit a few weeks ago.  We went in with 2 concerns: (1) potential scoliosis because of her preference of curving her body to the right (2) her hips being out of their sockets because she’s not standing at this age.  The orthopedist took a baseline x-ray and thankfully neither concern is an issue at this point, but she’ll continue to follow Maddie and we’ll go back in 6 months.

With the warmer weather, we’ve been taking more walks outside in her new stroller.  She’s not really fond of it as she prefers her infant snap and go carrier (but she’s reaching the size limit in that).  However, we can get the occasional smile!

     

Following up on the issue with Maddie’s myoclonic episodes from the last post, they seem to have calmed down again so I haven’t contacted the neurologist although we have a pre-scheduled follow-up appointment in a few weeks.  With the milder episodes, her mood has also improved greatly and we’re seeing lots of smiles again!

       

 

Thank you for your continued prayers and support.