Saturday, July 3: Update

UPS delivered pieces of our new reality today. After Claire used the wedge last week to lay on her stomach, I began ordering equipment for our home therapy sessions. Our wedges arrived today, one six inches high, the other eight. It was the first piece of equipment that was delivered.

As we begin to forecast what the future looks like for the near term months, we are making a list of the things we will need to maximize Claire’s recovery potential. We are eager to have Claire home at the appropriate time, and we know that when she is here we will be leading the majority of her therapy. In addition to our wedges we have ordered a new bed/crib, tumbling mat, weighted blanket and vibration snake. We expect the list to grow.

This planning helps us regain some feelings of control. We have a lot of uncertainty about Claire’s recovery potential, but we know that we can control the environment and effort put toward it. The researching, buying and organizing is cathartic for me.

Claire’s exhibited improvement today was more therapeutic than my shopping list. Tiffany and I took Claire for a walk outside and it was her best outing to date. She showed very little agitation and seemed to enjoy the sun on her skin. We managed to catch the one hour in the metroplex when it was not raining: while humid, the walk was nice and temperate.

Claire’s walk followed a long day of rest. She slept very well last night and woke up only once for an hour. She napped through the early morning, only waking to confirm the resounding German victory over Argentina. The rest did her good.

We made a slight change to Claire’s feeding schedule today. Claire has been eating via G-tube every four hours with each feed taking two hours to cycle. This has left us with few hours to do therapy, get baths and take walks. We experimented with accelerated feeds so that Claire only takes an hour to eat instead of two. She did great. No reflux. No aggravated stomach issues. We will keep the two hour cycle through the night, but if looks like we’ll be able to reclaim some working time during the day.

We hope everyone is enjoying their weekend. Thank you for your prayers and support. Happy 4th!