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 her neck is still stiff towards the right side (again, especially when she’s upset).  After two full weeks, she’s getting used to the therapy schedule and Jen’s been trying to accommodate them by offsetting the feeding schedule and napping schedule.  Speaking of napping, she’s been sleeping well at night, but has inconsistent naptimes.  Some of it is due to the therapy schedules, but it could also just be  transitioning to another location.  Her eyesight is still not back, but some therapists say they noticed her focusing on things, but not consistently.  Still hard to determine how much she can see, if anything at all, but we’re hopeful that these are signs of progress.

Her feeds are still going through the G-tube and she’s gained over 2 lbs (which is quite a bit at this age) since arriving at KKI.  Jen’s very interested in starting to feed her orally but the specialists are still concerned about her ability to  swallow.  Due to her stridor, there is concern that she will breathe in at the wrong time and potentially inhale her food into her lungs.  We are hoping that she can start eating a little bit of purees soon.  She seems interested when Jen places a small spoon in her mouth.

She’s recovered enough of her vocal ability to complain vigorously during her PT and OT sessions.  Here they are working on her core by having her sit and support herself with her arms.  The therapists try to support her neck as little as possible so that she can re-learn how to use all those muscles.  She looks like she’s in pain, but if she’s too comfortable, it means that she’s not working/strengthening enough.  There are other sessions where she just sleeps throughout and those aren’t very useful.

When I visit, it’s usually during naptime, so here’s her sleeping on my chest.  Her weight gain is very noticeable and reassuring.

This day, both of us fell asleep (sorta) and it’s the first time that she’s actually slept on her back in my arms.  You can tell her hands aren’t tight anymore, which is a great improvement.

We wanted to thank everyone for their continued prayers and for sending us notes and messages of encouragement.  Bill’s co-workers/company have been very supportive and his team at work have stepped up to cover during his absences.  Bill’s dad has now officially taken over the bedtime routine after Abby’s bath and the morning routine after she wakes up, which has been immensely helpful.  Jen has been ordering parent trays for meals and is getting used to the sleeping conditions, though she treasures the two nights a week she gets to sleep at home on the weekends.

For your continued prayers, we hope for continued recovery for Maddie and strengthening her body daily.  We also need wisdom and patience as we wait God’s timing for many aspects of our lives.  We’re about halfway done with our stay in Baltimore, but transitioning home will bring with it more challenges.