Since today was not a plex day, Bella got to sleep in a little bit. In spite of that, she was in a lot of pain and was not ready for PT at 10:30. She had a good attitude about it and made every effort but had to take a lot of breaks. PT found the perfect cure for Bella’s aching back and sat her on an exercise ball. While on the ball, she practiced toe taps and we played volleyball with a beach ball. Since I’m not getting my workouts in anymore, I took advantage of lunging for the volleyball when I had to retrieve it for Bella.
I forgot to mention this yesterday but we’re pretty sure Bella’s double vision is cured! She hasn’t needed her patch the last 2 days and the neuro doc that examined her yesterday did a pretty thorough eye exam with her iPhone. It was the coolest thing! She had both eye charts and the color tests. She said Bella has 20/20 vision. Woohoo!
We’ve been having some difficulties getting the right people at Dell Children’s to talk to our case manager. I’m not sure how hard our case manager was trying before yesterday. Brian toured Dell today and found out that because they just opened the new tower, they are busy transferring the patients that are already inpatient and have not been admitting new patients. Now that they know how serious and interested we are, I’m hoping that they will be able to work things out. Doctors are still talking about Thursday or Friday but all of that depends on Dell and insurance.
I managed to escape for an hour today but had to leave Bella alone. I really needed to get out – needed some more k-cups, some vegetables, Bella’s end of plex and surviving EMG gift AND I needed a good cry. What Bella is going through just sucks! Being in the hospital for one month today (minus 4 home free days) sucks! I miss Brian, Faith and Brody terribly and I’m not sleeping well. Mainly my heart just hearts so much for Bella that sometimes I have to allow myself a little breakdown so that I can be strong for her again.
Fortunately while I was out Bella’s good friend Avery stopped by for a visit. Bella really needed to see her friend, and I came back to a happy rather than frustrated child.
During Bella’s OT session, she painted a ceiling tile. We had decided that Bella would leave her mark on this hospital since we've spent so long here. OT had to make it difficult so she put weights on Bella’s wrists and made her sit on the rubber disk while she painted. Bella is a perfectionist and loves art so she was not pleased with the results. She got pretty frustrated with herself in the middle of the session but then took a break and finished strong. I think her tile is awesome (will post a pic in a few minutes)!
We were able to go outside for a little sunshine before they locked us in tonight. Security closes the doors to the courtyard at 6 every night. With Bella’s busy schedule, it is hard to get outside before 6. I think it helped her a lot to get outside and breathe some fresh air and it helped me to thaw out. Not sure if I've mentioned this but one symptom of GBS is being very warm all the time. Hospitals are already cold but then we keep the air all the way down and I shiver all day. Bella, however, is always hot.
Tomorrow is the final plex treatment and then Bella will get her vas cath out! She’s nervous that it will hurt and I must admit it scares me too but I cannot wait for her to get rid of that thing!
“Even on my weakest days, I get a little bit stronger”
No comments:
Post a Comment