2:58 PM:
From last night - Bella & Brody snuggling. I intended to write a long update last night but it just got too late. I'll do that later but for now just wanted to tell you that both the OT and PT said Bella had her best day of therapy with them yesterday! Super Bella is trusting her cape again!
11:23 PM:
It has gotten harder and harder to write updates now that we’re attempting to lead semi-normal lives. My last update mentioned the awful screaming in the night. We started giving Bella both a Melatonin and a Benadryl at night, turned off her monitor and told her she was only allowed to text us if she needed to go to the restroom. That worked well for several nights (until last night). Bella did not cry out but she did text us a few times during the night to have her legs moved. The good thing is that she was coherent enough to text but she is not supposed to ask for help moving her legs or doing things that she should be able to do on her own (therapist’s orders). Even though Brian is the one who gets up to help her (so he can carry her to the bathroom if that is what is needed), we both still wind up feeling like we’ve been run over by a train when 5:45 AM rolls around and it’s time to face the day.
Bella has maintained a positive attitude for a full week now. It’s been so wonderful to see her cheerful! She appears much stronger and we can tell she is really trying. I’m still frustrated by the very slow progress. She is however getting ever so slightly better. Her OT commented today on the improvement since yesterday. She had Bella picking up colored cotton balls with a clothespin-like clip and dropping them in cups. Yesterday Bella was not able to grip the clothespin so it had to be fastened to her hand. Today she held it and squeezed it on her own. At therapy, they are now putting Bella in this new supported walker (can’t remember what they call it). It fastens underneath her to form a seat and has a cushioned surface for her upper body to rest on. She feels a little safer in it so it is helping to build her confidence in her body. She took some steps in that yesterday and today.
I was able to get Bella into see her Austin neurologist today. It took some coaxing and pleading to have them agree to see her sooner than October but I was disappointed in the visit. This doctor just didn't seem confident enough in the answers he gave to my questions. His office of 8 or so neurologists only has about 4 GBS child cases a year. And yet, he felt like he had enough experience to say that most kids with GBS get better in weeks. Doc said we could perform another spinal tap and EMG on Bella (while sedated – just to make sure nothing was missed) or we could wait and see if she keeps improving. Of course, I want to wait and see rather than make her suffer through those tests. While I do not look forward to the trip, I think we’re going to have to try to get in to see our Dallas neurologist again. I just feel much better about her experience with GBS and her ability to provide a good treatment plan for Bella. I’ll call her office tomorrow and see when they can get us in.
Still working on the home therapy and the counselor. I've been given some names of 1st year physical therapy students who are looking to earn some extra cash. We’re hoping to get one here daily for a few hours.
Tonight Bella stood by herself for about 30 seconds while brushing her teeth! We've been working on standing to brush but usually have to support a good portion of her weight. It’s late again and I think I’ve forgotten half of what I wanted to say. Bella is making improvements, very small improvements but improvements none the less. The self-supported stand tonight was a huge improvement! Praying we start seeing huge leaps in progress.
11:57 PM:
Falling asleep and I remembered one of the things I forgot. I was nervous today that the neurologist would not be satisfied with Bella's slow recovery and would stick her back in the hospital. I prayed and asked for some good news. HE answered. Thank you God!
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