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 …
Category: Maddie
Maddie Update 9/18 – One month at home
Hi everyone, The past few weeks have gone by fast and we've got a lot to update. The biggest change for Maddie has been with her eating by mouth. Maddie was about to turn one prior to discharge from rehab, so the nutritionist suggested switching from infant formula (Similac) to Pediasure formula to ensure proper nutrition. …
Maddie update 9/1 – Week 2 at home
Hi all, Maddie been home for two weeks now and it's been just as hectic. Here are some of the updates from the past week. Maddie has had feeding therapies twice now at Inova and they are going well. We're working on drinking liquids, but it's hard for her to control the transition from the front …
Maddie’s been home a week!
Hi everyone! Jen and Maddie have been home for a week now and it's been very eventful. We celebrated her 1st birthday on Saturday with family and she's had 5 doctor's appointments already. She's eating 2 ozs of purees three times a day and the therapist allowed us to try formula by mouth, but only …
Maddie’s home again!
Hi friends and family, Maddie was discharged from KKI this morning! All the nurses and therapists came to say good bye and wished us luck. Her arms and legs are much looser and mostly do not require splints anymore. She's also been stridor-free for a while now with only one recurrence last week. The speech …
Maddie Update 8/11
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 …
Maddie Update 8/4
Hi Everyone, The speech and occupational therapists finally felt comfortable letting Maddie try pureed foods this morning. She ate 1 teaspoon (5 ml) of apple puree beautifully! She was tasting with her tongue and smacking her lips- I'm sure it was delicious since she hasn't taken anything by mouth in 3 weeks! They will continue …
Maddie Update 8/1
Dear friends, Maddie has now been at KKI for over 2 weeks now and is progressing. She is gaining more neck and head control and is able to turn her head from side to side (mostly when she's upset). The stiffness in her limbs is loosening up and she's getting more midline (straighter core), although …
Maddie Update Week of July 17th
Dear friends, It's been a week now since we transferred successfully to Kennedy Krieger Institute last week. The first few days were very stressful with Maddie adjusting to the new environment. Even though she can't see, the smells, sounds, and feel of the room and building are all different and it's taken her a bit …
Maddie Update Week of July 10th
Hi praying friends, It's been a hectic week for Maddie. In order to ensure proper feeds, the doctors performed a small operation to install a gastrostomy tube directly into Maddie's abdomen. The operation went smoothly and they started feeding from it last Sunday morning and she is now taking up to 7 ounces of formula …
Bill + Jennifer 