Mother's Day

Below is a picture from Mother's Day.  I was able to spend it with all 3 children and my mom.  What a special day!  The nurse's took a nice picture of the 5 of us (Jason, me, Samantha, Alli, and Josh) and put it with a cd of mom inspired tunes.  It was super thoughtful.

Below is a picture of Alli with her bipap mask on.  She looks a little bit like Scuba Steve.  She tolerates the mask pretty well, given that it constantly feels like she is driving with her head out of the window.  The next step from here will be to the high flow oxygen cannula.  The high flow cannula does not provide pressure support.  So, this will be an indication of how she might do without the more aggressive forms of oxygen therapy.  She will do short trials with the cannula and then return to the bipap to gradually increase her ability to tolerate not having the additional support.

 













Alli has been continuing with physical and occupational therapy.  Yesterday they had her on a mat on the floor sitting up with an ace bandage around her stomach to help provide some additional trunk control and support.  This seems to help her be able to focus on moving her arms and head control, instead of having to actively engage all of those things on her own.  She did a really great job!  The last couple of days she has spent a couple of hours in a Kid Kart.  She tolerates this well and looks pretty comfortable.  Yesterday we were able to read some books together.  It was nice having her down on my level so I could more easily show her the pictures and engage with her while reading.

Before Alli was admitted back in February we had her fitted for a Kid Kart, so seeing her in this the past couple of days helped me picture what it might be like to have her in this at home.  Totally doable when the time comes.  My mom has been back in town helping us.  Yesterday she brought Joshua with her and spent some time visiting with Alli.  They read stories and made animal noises - well, mom made animal noises.  She does a great job with the elephant :)  Alli seemed to enjoy it.

After our visit at the hospital, I took Samantha out for an impromptu dinner (followed by ice cream at the Frosty Caboose) with her buddy, Gabriela Elisa, and her mom.  It was a much needed break for both of us.  We had a great time!

The Special Olympics are at Emory this weekend.  So we are thinking about taking Samantha over to watch her friend, Sarah, compete as a unified partner in gymnastics.  Sarah also has a sister with down syndrome and has been a good friend to both Samantha and Alli.  We look forward to cheering her on tomorrow!