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I think I maybe should have stayed in bed today. Casey has a pretty full day so I got early to get dressed and try to get a head start on things. After I got dressed I REALLY wanted some coffee. I got it all ready, pressed brew and stood back to wait for my …

We have been training and working with 2 new nurses over the past month. Angela comes Wed-Fri then we have Ann Mon-Tue. Angela is the one I was really worried about. On her 3rd day she pulled out Casey’s gtube. I was so worried that she was not going to be worth keeping. She actually …

I wrote MANY months back about having to take Casey to stay at a nursing home for one night. It was a horrible experience and really put a lot of things into perspective for us. Mainly, that we want to do everything humanly possible to avoid having Casey ever end up in a place like …

Casey wears splint or gloves on her hands that are designed to keep her hand and thumb open instead of in a fist. She has had to wear some version of these since short after birth. You can see some of her baby NICU pictures with little blue plastic ones. The first set were to …

I have seen people put up posters for lost dogs, cats, even birds but never a fish. I honestly don’t know what happened to Casey’s sucker fish. If I thought there were a chance for him to come back home I would put up the “Lost Pet” poster for him. Every so often I have …

We had a meeting with our lawyer this morning. We have been working on setting up our wills, and a trusts for Casey and all that good stuff. Today was our final meeting. We had to go in, review all the final drafts, and sign a bunch of stuff. We decided to take Casey with …

So Friday was a bad day, Casey’s nurse pulled out her tube and things were just really stressful. Then Monday came with a new nurse and things just seemed to go from bad to worse. I was so frustrated with the nurses by the end of the day Monday that I didn’t even know where …

Oh man, it is so hard to get the right nurse. We interviewed/met a bunch over the past month. Out of them all there was 2 that I really liked and 1 that I was on the fence (just couldn’t read her in our meeting). We hired my favorite (Michelle) but sadly Michelle is a …

What a month it has been. We had a ton of appointments this month but I have rescheduled them all since we have not had nursing in place. Maritza left us the last week in July. We had Michelle for 2 weeks. Michelle had just started to get used to taking care of Casey when …

Isaiah came over with his parents for a little while this evening. Casey really seemed to like him. She has always really taken to boys. It’s kind of funny. She likes to play with little girls too, but she really shows off when little boys are around. She was looking around and talking to him. …