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Not even an hour after I posted how we finally have a nurse that we like picking up 2 days a week, I get a call from our agency saying that she can only do 1 day, and it is much shorter than we had planned.  Ugh!!!  I guess 1 short day is better then …

We had a follow up with Casey’s dentist last week.  Casey has been teething (really since she was about 9 months old).  She has lost 10 teeth now and has 15.  Her molars are all coming in, and they look so painful.  Some are coming in her tongue bed, some on the outside of her …

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 …

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 …

Things have been busy- as usual- but good.  Casey is still having feeding issues.  She has not been able to gain weight like we had hoped and so we are spending a lot of time trying to get more calories and fluids into her each day.  Her site is still so leaky that it’s hard …

Casey had her recital last night and she did a great job.  All of the kids did great.  We are so fortunate to have an organization like Legacy of Hope in our area to offer programs like 2Dance2Dream for Casey and other kids with complex needs.  Being able to see Casey take the stage was …

It has been a long week around here.  We are not sure what is going on with Casey.  She started doing this crazy thing when we would take her to bed EVERY night.  She would look fine for 15-30 minutes, then her heart rate would shoot up and her oxygen would fall.  We would have …

Where do I even begin?  Shortly after my last post, Casey started to do much better.  She was not needing oxygen except for a few ours every few days.  She was getting her spunk back.  She had started back to dance, music and therapy.  All in all, things were going really well. We had her …

Casey has been getting stronger by the day.  After a great week we decided she was up for her birthday celebration with her friends.  She was so excited last night about seeing her friends that she could not even get to sleep.  She got all dressed up today in her My Little Pony dress, the …

We have been home for a little over a week now and things are slowly improving.  This is pretty normal for Casey.  She can go downhill really fast, but the climb back up is always a long one. Casey has still not found her voice.  She is trying to make some sounds, and there have …