Made of Gray

A breath of fresh air

Holly D Gray2 Comments

We decided to start picking the many weeds that covered the front yard. Eric and I loaded Caleigh up in her stroller and she watched us for a bit.

and then she fell asleep...... I guess we weren't entertaining enough for her.

Things have been relatively quiet lately. We have been holding our breath waiting for Sunday and our trip to Pittsburgh. So far things are still on track and we keep telling Caleigh about a great 'car' ride that she will going on soon. I've been hesitant about our trip and not really sure why. I guess it is probably just the unknown that is getting to me.

Caleigh has been doing well. Eric and I did our first blood draw for Caleigh's weekly labs. Interesting fact...our nurse asked us what we thought her role should be anymore..... We told her that it shouldn't be much. That night, Eric and I did Caleigh's CVL dressing change and noticed a bit of a rash around her g-button and chest area. She has done this before so we started putting Nystatin, an antifungal cream, on it. The rash hasn't resolved itself so we started an antibiotic cream. We are thinking maybe the rash is something bacterial or maybe something contact. We also had to change her line dressing again last night because there was a tiny area that was open. I think all the creams made the tape not adhere well. Lets all hope for a clean, infection free CVL. The rash isn't better as of today so well see.

Caleigh's belly has been up and down with bacterial overgrowth since we left the hospital this last time. Her stools have been really loose, large amounts and she is really gassy, plus she has sweet smelling breath. These are all classic overgrowth signs and she's got'em. So we started the MUD antibiotics back up and hopefully that will nip it before it gets bad. Yesterday we went to the lung doctor, Caleigh did really well when we hooked her up to the oxygen saturation monitor. Despite her doing good without the oxygen, we all decided that Caleigh still needs the oxygen. Mainly for car rides and procedures that are uncomfortable and lengthy. When she isn't crying we can take her off of it, when we think she is content and doing well. We will get to visit the lung doc when we get back from Pitt to reevaluate. Today we all loaded up in the car and went to Caleigh's GI appointment. Same ole same ole, and it looks like we have the go ahead to jump a flight to Pittsburgh. We talked about other hospitals in the country to take Caleigh to for intestinal programs. We talked about cereal and decided to wait until we get back to try it. There are lots of plans, but everything is waiting on our return.

After our appointment, We took Caleigh to the botanical gardens down the street. It was wonderful weather and the flowers are just gorgeous. So here are some pics from today's trip.....

I probably won't be able to get on here until we actually make it to Pitt. So stay tuned for updates up north.

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