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 1/2 oz a day.  This will help Maddie practice swallowing without potentially choking on the liquid.  She’s making progress with turning over to her side and even onto her belly.  The neurologist and neuro-surgeon both saw her this week and were happy with her progress.  Neither ventured any timelines for milestones but were encouraged she is still steadily improving.  We are still working on her sleeping schedule as she’s been waking up around 4-5AM each day and her napping is still a challenge with only a few 15-20 min naps a day.

Please pray for continued wisdom and patience with all the things that need to be done to fully transition her home.  We are also thinking about moving Abby to a new daycare closer to home and hope that she transitions well.  It’s been great having so much help and support from our friends and family.

Here are a few pictures from the past week:

Maddie sleeping in her new rocking chair after being fed. She still tends to arch her head sideways.

She’s making progress with her turning – but only one side.  We think it’s partially due to her left side being stronger and partially due to her G-tube being on that side as well.  It probably hurts to roll on that side.

Abby is so thrilled to have Maddie home.  She is very caring and helps out as much as she can.  Here she is giving Maddie a good night kiss.

In the morning they play in our bed and here’s Abby giving Maddie a fist bump since her hands were clenched.

We had a family gathering to celebrate Maddie’s first birthday (the day after she arrived home from rehab)!  Auntie Kelly came over last week to help set up some decorations with Jen. Here’s one part.

Here’s the rest.  Those are custom cut paper animals (courtesy of auntie Kelly)!  Abby was super excited.  (She doesn’t usually sit in a highchair…)

The sisters took a picture together.

Here’s a couple of Maddie with mommy and daddy.

And the cake was delicious.

Jen has taken over as chief therapist.  Here she’s having Maddie work on her core muscles and head control.  Maddie’s getting a little bit better, but still can’t fully control her head.  She also complains loudly the entire time and seems to be questioning why we are putting her through it.