Week 2, Day 5

Sometimes it is hard to see progress until the end of the day.  Things started out a bit rough in our first session, with Sunshine refusing to take bites when she was supposed to.  I got to learn how to gently hold her arms and head still to get the bite or drink in.  With Sunshine, if she needs that sort of redirection, after she gets one bite in then she is usually back on track and continues to take her bites and drinks like she's supposed to.  While I do not like having her throw her "tantrums", I am glad for the therapists and doctors to see it and help me know how to react to it.  She did not meet her new goal for intake for that session, which was discouraging at first.

Matt went with her to her next session and said she did great!  She did meet her new snack goal and that was awesome.  She continued to do well in her afternoon sessions, with only one or two moments of "bite refusal".  Supper at the Ronald McDonald House was difficult again.

Part of the problem is that she begins to severely tire out around 20minutes into the 30minute eating time.  Those last 10 minutes are much harder to get food in.  And I have to be careful because it just gets worse if I try to hurry things along to get a good total and don't give her enough time in between bites.  It is hard for me to remember that the quality of the bite is still more important that the quantity.

But, with all those difficulties, the numbers came out pretty good!  By the end of the therapy day, she had already had 22.5oz!  And tonight, despite the struggles, she got 5.6oz!  That made a total of 28.1oz for the day.  Way to go, Sunshine!

This weekend we are going to keep up with doing all five feedings ourselves, and were even asked to make some of her food ourselves.  I have instructions from the clinic kitchen on how they make things and what brands, etc. they use so we can make things very similar to what she's already been getting.  She has a small variety of fruits and veggies she's already tried, so we are supposed to stick with those same things over the weekend.

Today was the last day of therapy for our friend N. His mom has been such a help and encouragement to us and the girls have had a great time playing with their new friend.  We are going to miss them next week!

P.S. A funny moment today was a mom trying to set Sunshine up with her little 5-year old boy who also has Down Syndrome.  She just couldn't get over how cute she was and how she didn't look like she had Down Syndrome at all.  She was convinced that they would make a good match.  Guess we're going to have to keep our eye on this little heart breaker!