Poor Casey

Last night around 12:30 I noticed some red spots on Casey's shoulder. I was worried that something had bit her so I grabbed a flash light to take a closer look. I did not want to turn on the overhead light since she was asleep. When I started looking with the flashlight I noticed the red marks were not just on her shoulders, but her entire chest, thighs, shoulders and neck were all covered in red whelps. It looked awful. I woke Tim up and we covered her eyes so we could turn on the big light. It just looked so bad. She never woke up, but something was wrong. We checked her vitals (heart rate, oxygen saturation, temperature, etc). Everything looked good, except her skin.

I gave her some Benadryl (one of the few advantages of the G-Tube is you can feed/medicate without having to wake up the baby). After about 30 minutes the whelps were gone.

All day today Casey has been so fussy. She spiked a little fever around lunch. With some Tylenol the fever came back down. She just was so upset all day. We even had to cancel her water therapy today. I hate having to cancel things she loves. Around 4 we were running out of ideas. We decided to give her a bath a little early. Maybe the bath would calm her down a little. After we got her stripped down her nurse noticed a spot on her back. It looks like something did bite her last night. There was 1 big and 2 small areas that I think are bite marks. After her bath we put some Cortizone on the bites. She finally started to chill out. Poor thing. I think her back must have been itchy and bothering her all day.

I have no idea what got her. We were in bed next to her and we were both fine. I just changed the sheets and could not find anything there. We have seen the occasional spider but that's really about it. We have a treatment done every couple of months to be sure that we don't have anything, and when we do see spiders we have them come out right away. I really have no idea what bit her. It doesn't seem infected or bad today. She just had a weird reaction to it last night. The itch cream seems to be all she wanted.

Maybe next week we can get her in for an extra pool trip. We will have to see what we can do.

That's about it for now. As always, we hope everyone is doing well.

Busy Busy Girl

What a week Casey has had. She had therapy on Monday. A doctor appointment followed by labs on Tuesday. PT followed by water therapy Wednesday. A play date on Thursday. 2 therapies on Friday. Family came in on Saturday for a family party (delayed Mother's Day and my sister and my birthdays).

Casey's cousin, Riley came in with her Aunt Molly from Fort Worth. Riley is 4 and they have a lot of fun together. Her Cappy and John stayed over so her Aunt Megan came back today so we could all have brunch together too.

I have got one tired little girl. I think she had a really fun week. She just got finished with her bath. Afterward I gave her her nightly medicine and she is crashed on the couch. Poor little party girl, she wore herself completely out.

Not a whole lot going on this week. Just therapies (including water therapy). I think we will rest up over the next couple of weeks. We have to start getting ready for her ear tubes and Botox coming up on June 12th. As always, we hope everyone is doing well.

Play (Sleep) Date

Casey sort of had a play date today. Her friend Maya and my friend (Maya's mom) Elizabeth came over for a little while this afternoon. Casey must still be tired from all her fun yesterday. She fell asleep right as her guest arrived and she did not wake up until they were about to leave. Poor Casey. I had been telling her all about her play date and getting her so excited, then she missed it. Hopefully we will be able to do it again soon. Either way it was good to see Maya and Elizabeth. For the time that Casey did wake up I think she had fun.

Water Therapy

Casey did so great at her first water therapy today. She really loves the water. At first the therapist (Margaret) tried to use the floaty collar. Casey was not having that. Once she got the collar off Casey was so happy. She got to kick, walk on the bottom, float, play in the jets, ride a noodle horse, all kinds of fun stuff. Maritza took a bunch of pics. If you want to see more of Casey's exciting day you can see them on her Flickr page. We can't wait to go back next week. Such a little fish :)

There is a video from today too, and one from her coloring a few days ago. She just learned how to make drawings for us.

What a Day

So Casey had a GI appointment today. No big deal. We went in and overall everything went pretty good. Casey has still been really leaking around her GTube. Also, the wound around the tube still won't heal. The doctor ordered a bigger size. I really hope that does the trick. We had to get some blood work done. After we left the doctor on the second floor we went up to the third to get her labs drawn. The lab was insane. There were so many people and kids just yelling and going crazy. Then a kid would come out screaming from being poked. It was a mad house.

We finally made it to the back. The tech had a hard time (as usual) getting blood from Casey. He was able to get it in the second poke, but each poke was pretty long and drawn out. We have to stay on top of labs, especially with all the meds she is on, but I really hate getting them drawn.

After the lab we loaded up the car to head home. We stopped real quick to grab a late lunch on the way home. When we got home Tim had left some of his tools in the garage. I didn't see a hose and crushed it with the van.

I can not believe what I did next. We have had a GTube on Casey since she was 1 month old (almost 3 full years now). I have always heard people talk about them getting ripped out and popping and all the other things that can happen. We are SOOO careful with Casey's. She had on her extension (a line from the GTube that plugs into food and medicine sources) and I was pretty sure I had moved it to her lap. I don't know what happened. I picked her up out of her car seat and felt wet on my leg. I looked down to see her food making a big mess. When I looked closer I saw I had somehow pulled the entire thing out. OMG!!! Panic!!!!

Tim had come out to help us unload and so he and Maritza got her stuff and I just rushed her to the couch. She never really yelled. It wasn't bleeding either. She looked and seemed fine. Luckily we had an extra GTube. We got the extra one open and put it in. We will keep an eye on it over the next couple of days to be sure it's okay. So far so good. I just can't believe I did that. We are always so careful to avoid that very thing.

The fortunate part of the accident is that since she has been having so many issues lately I had actually deflated a lot of the balloon. She usually has 5-8cc of water. I had only been using 2-3 over the past couple of weeks. So luckily with less water the balloon was a bit smaller. The doctor had just ordered a bigger size so we have another one coming too. So it could have been worse. It was still bad. I am so mad at myself for doing it. But it could have been worse.

Between Casey and Tim's tools I think I have done enough damage for one day. I think I will stay inside for the rest of the day. Casey has her first official water therapy tomorrow. I am sure she will love it. We will get lots of pics. As always, I hope everyone is doing well.

No Pool :(

I was hoping to post pictures of Casey in her first water therapy today. Sadly she woke up with a bit of a tummy bug. Her therapy was at 2, but after a few hours and MANY diapers I decided to reschedule. They could not fit us in later this week so we ended up canceling until our appointment next Wednesday afternoon. The worst part was that by 2ish she was doing much better. She may have been okay. Her nurse had to take the day off so if we did go I wasn't sure how we would get her there anyway, so maybe it was best to wait until next week. Anyway, she is feeling better. That's all that really matters. She has GI next week on Tuesday then we will hopefully really start water therapy on Wednesday. I will post pics once we get there.

Talented Tim

So Casey out grew her diaper stand around age 1. With her being so long and so stiff there was just no way to get her on the standard baby changing station. We have been making due with the floor, beds, etc. All of the beds in the house have the mattress pads on because changing her on the bed has led to many accidents.

We have been trying to come up with a better solution for a while. In our bedroom there is a big bay window. This was just wasted space. We knew that this was the best place to put something, just what?

I am very fortunate to have a talented husband. Tim spent a few weekends and evenings in the garage with his power tools. I think what he built came out so wonderful. We ordered a pillow tow, but he did all the base work.









A lot of window seats have flip lids to get in for storage. Being that we want to use this as a diaper stand for Casey we really wanted open accessible storage. Tim made some really deep cubbies that are perfect. We can store all of Casey's diapers, wipes, blankets, drool cloths, wedges, etc. I am so happy; this makes storage and diapering so much easier.






In addition to using it for diapering we also can use it for getting her dry and dressed after her bath. You can barely see her hand and head sticking out of the towel, but here she is using her her new bench after her bath.









This picture has nothing to do with the bench, but she is just too cute not to post it :)