Guiliana

Yesterday was a beautiful and heartbreaking day.  Guiliana's service was yesterday afternoon.  We were able to get Casey's nurse to come in so that Tim and I could both go to the service.  It was beautiful.  They had a picture slide show that showed so many wonderful special memories through Guili's 6 years.  Guili's dad promised her that when the time came he would tell the world how amazing she was.  He did a great job of showing everyone the person she was, not the fragile, sick patient, but the little girl with a heart of gold and feisty attitude.  Guili and Casey were so much alike.  Everything that was said during the service was so relate-able for us.  No one should ever have to bury their child.  The grace that we saw in Guili's parents was inspiring.  We have a special place in our hearts where we will always hold Guili close.  It's hard to believe she is not with us anymore.  We will miss you Guili.

Roller Coaster

This week has been a roller coaster.  We started out with a visit from some old friends that were in town from California.  Casey had a great time with them.  They read her an elephant story, they had a tea party, and then they all watched ponies together.  She paid the price for a fun day shortly after everyone left.  That night she had a lot of bleeding in her tummy (this seems to happen when ever she gets stressed out or over does it).  We suctioned out as much as we could and gave her some medicine, but it made for a miserable night and following day.  She had to get more morphine in that 24 hour period than she had had total in weeks before.

I had to run some errands in Belton Tuesday and was able to see another other friend for lunch (just me, Casey stayed home still recovering from Monday).  It was nice to catch up.  Our friends on Monday and Tuesday are friends that we can see every day or every 10 years and we are always able to pick up right where we left off.  Those are pretty special friendships.

Wednesday we got some really bad news.  One of Casey's friends passed away in her sleep in the early hours.  Guili has been mentioned and pictured in many of our posts.  She had the same diagnosis as Casey and they were very much alike.  She has had a rough time with seizures over the past year and was in the hospital with us back in April.  We are so sad that she is no longer with us and we miss her terribly already.  Our hearts go out to her family.  We have come to know her family really well over the past couple of years.  We can only imagine what they must be going though, and we ask that all of you keep them in your thoughts and prayers.  They are a wonderful family.  We hate to see anyone go through this type of pain and loss.

Thursday Casey seemed to have recovered from Monday so we took her to meet some of her little friends and watch 'Monsters U'.  She had a great time.  She talked through most of the movie and was so into it the entire way through.  A new trend we have seen over the past few months is that anytime we do anything fun (or stressful) Casey pays the price soon after.  Her heart-rate was way up and her oxygen was way down when we got back home.  We had to load her up on pain meds and drag out the oxygen again.   She calmed down in a few hours, and we did have some blood in the belly later.

We want to be sure that Casey gets to do fun stuff, but it's hard to balance.  Every fun activity takes such a toll on her.  She has a great time doing these things though, so I guess we have to just find a way to help her recover as quickly as possible.