From Brian @ 9:15 PM:
Just met the father of, Josh, the boy next door. Please add them to your prayers. 15 yr old Josh was crossing a street after school on April 15th and was struck by a car going 55mph. The doctors removed a large portion of his skull to allow his brain to swell and heal. I assume they'll put it back when they can. He may or may not regain sight in one of his eyes. Currently he can not communicate. While dealing with this he also contracted pneumonia. Parents should never see their children suffer. Please hug your kids and tell them you love them!
Pops, a beautiful Clydesdale, came for a visit today. He was staring me down in one picture!
11:19 PM:
Today was the first bad day that Bella has had at Dell but it was still better than any day that she had at Dallas Children’s or Baylor. She woke up nauseous and with a headache. The headache went away with her shower and the nausea subsided a bit. Her morning PT session was spent working on some stretching and core exercises. Bella was the weakest this morning that she has been in several days. We went from her not needing any assistance to transfer last night to needing between 25-50% support today. She’s still much better than she had been but I don’t like seeing any delay or stalling in her progression.
At lunch we met with Barbra Sonnen-Hernandez, a GBS survivor and advocate. She brought Bella some sweet gifts and shared her story with her. She also gave me some good advice. Apparently May is GBS awareness month and Barbra took a picture with and of Bella. Both are now posted on her site:http://www.barbrasonnenhernandez.com/Advocacy-News-.html
Bella swam again this afternoon. While she really enjoys the pool, I think the swimming may be what is causing her weakness and fatigue. We’re going to ask that she not swim tomorrow. On her way to the pool, she walked about 68 feet with her walker. I try to remember that even though she's weaker today, she's still come so far!
According to the doctor, our insurance company wants to discharge Bella tomorrow. Brian and I don’t feel she’s ready – especially given her weakness today. The doctor will request another night most likely. We’re still hoping she will be discharged Friday but need to see some perkiness tomorrow in order to get out then. I wish her doctors and therapists were determining when she should be discharged rather than insurance!
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