Hi Everyone,

Hope you all had a great Thanksgiving with loved ones, delicious food and maybe some shopping too!  Here’s Maddie with her turkey shirt 🙂

Since our last post, we’ve had some gains in Maddie’s vision, although not consistent every day.  She’s getting better at using her vision in positions other than flat on her back (see picture below).

Additionally, while laying down, Maddie’s also maintaining focus for longer periods of time on familiar/easy-to-see objects (e.g., her red pom pom).  Although not in the picture, she’s looking at her red pom pom below and loving it!  The vision therapist mentioned that longer periods of focus helps the brain process information better so we hope to work towards more of that.  There is still a long way to go before she has what we consider “normal” vision, but we praise God for all these little baby steps towards that goal.

Below are some more pictures of her using her vision on her back.

Below we’re using her lightbox with a black and white turning wheel.  She was able to turn the wheel by herself twice during playtime!  Whether or not it was intentional, it was exciting to see and hopefully it will eventually become intentional.

 

From a physical therapy perspective, Maddie’s also sitting better by herself (even without her DMO suit!) as you can see in the pictures below.

In terms of equipment, we have one final piece we finally picked up yesterday after months of waiting: her gait trainer!  This device supports her while she learns how to stand and walk.  We ordered the same one she practiced with during physical therapy at Inova Fairfax Hospital, but that was only once a week.  Now we can practice at home everyday!  Look for pictures in our next post!

As mentioned in the previous post, we were going to see how Maddie does on the lower dose of anti-seizure medication this past month.  We didn’t see much difference in the first two weeks, but in the third week, we saw a noticeable decrease in the severity of her twitching.  There were less clusters (just single twitches instead) and only twice in that week was it severe enough for her to cry.  Prior to that, she would cry about once a day from twitching.  This past week has been hard to say because she’s fighting a cold, but after describing the changes on this lower dosage, we’ve received permission from her neurologist to observe Maddie for another month before making any changes in medication.

As mentioned above, Maddie’s currently fighting a cold so we hope you can keep her in your prayers to recover quickly.  So far, it’s coughing and congestion accompanied with a mild fever, but we hope it doesn’t get worse!

And last but not least, here are some recent pictures…

Napping so peacefully… (Abby and I were decorating the Christmas tree and Maddie ended up falling asleep on the floor next to us 🙂 )

So tired she fell asleep in her seat…

Abby showing Maddie a picture she colored for her…

That smile!