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 …
It’s been a busy couple of weeks since the last post… Maddie’s received some long awaited therapy equipment, had a few doctor appointments, was a flower girl and dressed up for Halloween! Maddie’s growing so fast we had to order new orthotics (specifically, AFOs or ankle-foot orthosis foot braces) for her because her old ones …
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 …
Hi Everyone, It’s been a while since our last post, so get ready for lots of photos! Since our last post, Maddie has been to a couple of doctor’s appointments: pediatrician for her 18 month check-up cardiologist for a normal follow-up GI doctor for her g-tube removal (yes, you read that right, her g-tube is …
Just a quick update, but we heard back late last week from the neurologist and he's okay for us to stay where we are! That means Maddie can continue at this lower dosage of anti-seizure medication and hold off on starting the second medication. We will continue to monitor her episodes for severity/frequency and contacting the …
Hi Everyone, These past few weeks have been more routine and relaxed as compared to the busy festivities at the end of last year. Maddie continues to have three to four therapy sessions per week with doctor’s visits here and there. Maddie’s biggest accomplishment recently (that we’re so proud of!) is her ability to sip from …
Hi Everyone, These past few weeks have been busy with the holiday season coming and going. Maddie was even able to partake in opening one of her presents Christmas morning! Over the past few weeks, Maddie‘s head/neck control and core strength have noticeably improved so now a lot of her therapy sessions are focused on …
Hi Everyone, Maddie has continued to get stronger and stronger these past few weeks. See below for some therapy session pictures. As mentioned in last time’s post, the most exciting development has been the emergence of some fine motor skills with her left hand. In these recent weeks, the right hand is also showing signs …
We are getting into more of a routine these days, with Maddie getting 3-4 regular therapies every week. She has physical therapy (PT) and occupational therapy (OT) sessions every week at Inova-Fairfax (see picture below). For speech therapy (also at Inova), she has “graduated” to every other week because she’s doing so well! She also …
Hi Everyone, Just wanted to share some positive updates so far this week 🙂 Maddie's stridor condition improved significantly last week and I have barely heard it at all this week! This makes therapy sessions a lot less stressful (for me) and more productive overall. Feeding is also continuing to progress! Maddie started sucking on a …
Bill + Jennifer 