Several weeks ago a co-worker told me that reading the blog gave her the impression of a baby chick fighting its way out of a shell. She likened the struggle to a rebirth and necessary but hard. I have watched Clare and have written about many of these challenging days as she struggles and fights with frustration to free herself from the fog that is holding her captive.
In the past week Clare has continued to make great progress but not without struggles along the way. I had no idea there were so many levels of awareness that people with brain injuries go through as they heal. When Clare was in a coma we got to know the coma scale that went from 1 to 15. Now that she is not in a coma we have been introduced to the “Rancho Los Amigoes Cognitive Scale” which goes from 1 to 8 and measures cognitive skills from “No response to pain, touch, sound or sight” (Level 1) to “Purposeful and appropriate” (Level 8). Clare is probably around a Level 5 right now. If you want to learn more about this you can go to http://www.northeastcenter.com/rancho_los_amigos_revised.htm
Clare remembers her past but seems more challenged with things that have happened the last 6 months or so. That memory seems to come and go with her agitation level. After a wonderful day of therapy and participating more than she has before, she engaged us in some conversation and during the questioning and answers she became more aware of things she did not remember. That really disturbed her and she became very distraught and tearful and kept saying “why don’t I remember?” “I can’t remember anything.” “I don’t remember you.” (Looking at me.) “I don’t remember you.” (Looking at her brother Nathan.) “I don’t remember you.” (Looking at Kris.) All the while looking scared and almost sobbing. She really does remember but when she works herself up it appears that her memory and brain go into protection/vacation mode. It is very hard for her, not to mention hard on those that are caring for her.
Clare is using her right arm more every day. The fine motor skills are not there yet but she is moving her arm. Her right leg is also moving better and transitioning from bed to wheelchair is much easier for her. It will be another 4 weeks before she can put weight on her right leg. She is also showing a sense of humor too. The other day her therapist asked her if she could tell him the goals they had set the previous day. Clare responded quickly to him that the goal was “to not have any more therapy.” The therapist said, “no that is not the goal,” and then noticed the big smile on Clare’s face and realized that she was teasing him. On another occasion Clare was scratching a lot and Kris was comforting her telling her how beautiful she was. Clare said, “even if I itch?” and Kris said “Yes you are beautiful even if you itch.” Kris went on to tell her that he scratches a lot and it is ok to itch. I asked Clare, “does that make you worry that you are ugly?” and she immediately broke into a huge smile and started shaking her head yes. Kris soon realized the joke Clare and I were sharing and we all laughed. Clare still has a quick wit and with time I am confident that she is going to be just fine.
Kris continues to receive physical therapy almost daily and is making progress. He is hoping he will be able to go back to work soon. The MRI and other tests on his heart came back good and they took the monitors back. What he really needs is to get Clare and him back to normal life. Sleeping in strange places and eating fast food can not help with recuperation.
With every advancement and progress there comes a struggle that Clare must fight through to get to the next round of challenges. We are so grateful she is making so much progress every day. It is like watching a glacier move down a mountain. It keeps moving and sometimes a big piece breaks off and we see more progress and rejoice. Most of the time the progress is ever so slight but we see it and are so thankful. It is wonderful to be witness to this miracle. I think there are many many of you that are the reason this miracle is happening. Focused faith can move mountains and in this case heal people. Thank you again.
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