Hi Everyone,

Maddie has continued to improve her fine motor skills and overall awareness these past few weeks. Her hands are starting to (although not 100% of the time) play with each other and to occasionally grab toys from one hand to the other!

Her overall head control has also been improving and is more noticeable now when holding her and helping her to sit. She will still lean her head to the side after a while, but she seems to be able to hold it up for longer periods of time compared to before. She still cannot sit by herself, but is making progress.  See below for some pictures from therapy.

Her vision seems to be making some progress as well. Her reaction from a dark room to lights on (as well as from lights on to off) is more consistent and noticeable as well. During a recent OT session, we used a light box in a dark room and Maddie seemed to be looking in the direction of the light (see below!). Maddie is scheduled for a formal eye evaluation from the state of VA next week and from there, we’ll see if she’s ready to start vision therapy services with Fairfax County.

One other encouraging thing is watching the changes in interaction between Abby and Maddie. When Maddie first got home from rehab, Abby was so excited to have her home and insisted on giving her a pacifier and other helpful things. However, after about a week, we think Abby noticed that Maddie wasn’t really reacting much so she just started to play by herself again and didn’t pay as much attention to Maddie. In the past few weeks, it’s become noticeable that Abby’s starting to talk to Maddie and trying to get her to smile, etc. We’re so happy to see Abby notice the changes in Maddie’s awareness and gravitate towards her more.  We are careful not to force any interaction to prevent Abby seeing Maddie as a chore or burden so the strengthening bond between the two is very encouraging.  Get ready for some sweet pictures!

Abby reading to her…

Abby feeding her…

Abby “sleeping” with her…

Maddie’s clusters of muscle twitches have continued. She’ll have a few “episodes” a day, some very short and some as long as a few minutes.  The episodes are mostly in her upper body and look like a person would flinch if they leaned too far back in a chair, with their head pushing backwards while the arms jerk forward.  Most of the time, she’ll be fine through the mild ones, but she’ll cry during some of the stronger episodes, which will wake her up from even a deep sleep.  Holding her and rocking will calm her down and afterwards she usually is back to doing whatever she was doing before.

With Maddie consistently off the g-tube and on a relatively normal schedule, we’ve been able to attend church services again.  Abby picked up right where she left off with her friends in pre-k and Maddie mostly sleeps through the service.  It’s been wonderful seeing all our friends and finally having the opportunity to thank everyone in person for their prayers, notes, texts, and food!  We hope to continue attending services and are grateful to worship together with our church family again.

And of course, we have to end with more smiling pictures 🙂 !