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 to settle down. Jen’s also adjusting to a small room and busy schedule with limited food and recreation options.

Maddie has therapy in the mornings and afternoons (minimum of 3 hours in 30 min increments) with a combination of the following different specialist areas:

• Physical therapy: helping her sit up, roll and have better head control
• Occupational therapy/speech: helping her eat by mouth; responding to different stimuli
• Recreational therapy: responding to various stimuli (smell, sound, sight)
• Behavioral psychologists: tracking sleep patterns and preparing for eventual in-home care
• Neuro psychologists: tracking overall progress of responsiveness
• Nutritionists: monitoring intake and growth
• Doctors: monitoring medications and overall health

The first few sessions were a bit difficult since Maddie is still on timed feeds (her formula is pumped over the course of an hour into her g tube) and she is so sensitive to wet diapers.  These limited what the therapists could do with her, but after shifting her feeding schedule and being more vigilant about diaper changes, she has been able to fully experience all the therapies.  She is more vocal and definitely lets you know when she’s upset.  Her stridor gets very loud and she moves her legs and arms when she’s upset.  There haven’t been any clear signs of positive responses yet.

On Thurs the entire rehab team, including admin staff, doctors, therapists, nurses, and others all met with Jen and discussed current progress and set a tentative discharge date of 8/17.  Bill called into the meeting from work and was able to participate in the discussion.  The staff answered all of our questions and we feel much more comfortable about the decision to come here.  They will reconvene in a week to discuss progress and we can touch base with any of the teams at any time.

On the home front, Bill’s dad, Lee, has been staying over at the house from Sun to Thurs and taking Abby to and from daycare.  We are so grateful that his schedule is flexible enough to allow for this and for all the help he’s provided running errands, cooking, cleaning, and giving Abby so many piggyback rides.  Jen’s mom also helps to pick up Abby and feed her on the days Lee needs to go back home.  Grandparents, auntie Kelly, and a few friends come over on the weekends to make sure Abby’s days are exciting and relatively routine.

For your prayers, please ask God to give us strength and wisdom as well as patience as we have 4-5 more weeks of separation.  Pray that Jen will be able to sleep better at the rehab center and is able to stay physically as well as mentally strong.

As with each  update, we are very grateful for all the support and would love to hear from you!