Hello everyone, this is Denise, Sara’s step-mom. First, I want to express my appreciation too for all those—and there were many—who were involved in the Benefit Concert last Sunday. It was an exuberant mix of the secular and the spiritual, and I really enjoyed myself much more than I expected under the circumstances. I am sure that Kristina is grateful for some funds to cover things beyond what my Kaiser insurance allows.
Tracy and I visited Sara this morning, and her room had undergone quite a transformation with cards, tchotchkes, and decorations—many of them from those who had attended the concert. We brought her some Christmas presents, two CDs (including one of classical music called Sweet Dreams), and peppermint scented foot gel. She was already in her chair and the most awake I have seen her. I must admit I have been a little skeptical of what others have reported here. She just has seemed not very responsive, except for one of our previous visits—on that one she gave opinions on what CD she wanted to listen to, and gave us the “S” and “A” when we asked her to spell her name on the spelling board. Today Tracy used her new color-coded spelling board to elicit whatever she wanted to tell us, but it took some getting used to. We didn’t want put words in her mouth (so to speak) by assuming what letter she might choose. As she responded, I took down the letters as he called them out. She signaled, “I want w” and then chose the row that started with the letter I, but bypassed that letter. Tracy told her that selecting a letter any farther in that row would not make a sensible English word. The nurse came in about then, so we all took a break. Spongebob was on at 11am, and she watched some of that until the ICU doctor came in. He asked her questions until she was able to indicate exactly where she was having pain, and they scheduled her for an X-ray. The team decided to put her back into bed and do some “personal maintenance”, so we stepped out for a while to give her privacy.
Once she was back in bed, Tracy tried the spelling board again. She seemed to pick up where she had left off—continuing with “wake me”, although she did not indicate that that was the end of the word or of the sentence. If put together, she said “I want wake me”. I am not sure that that is how she meant it, or if that was the complete thought, but it certainly was nice to see them working together.
Tracy’s glasses had broken last night and he had to get some made before dark (as he only had sunglasses to wear), so he explained to Sara why our visit was shorter than usual. I know that he has been disappointed too that he has not experienced what others have reported here in regard to movement or smiles. So when Tracy asked me if I had anything else to say to her, I asked “Can you smile for your Daddy?” (Sorry, I think that’s what she used to call him, and I just can’t use the term “father” as I have never heard her refer to him that way), and there was no response. Then I asked, “Would you like to smile for Daddy, but you just can’t?” and she indicated, “Yes”.
Tracy and I visited Sara this morning, and her room had undergone quite a transformation with cards, tchotchkes, and decorations—many of them from those who had attended the concert. We brought her some Christmas presents, two CDs (including one of classical music called Sweet Dreams), and peppermint scented foot gel. She was already in her chair and the most awake I have seen her. I must admit I have been a little skeptical of what others have reported here. She just has seemed not very responsive, except for one of our previous visits—on that one she gave opinions on what CD she wanted to listen to, and gave us the “S” and “A” when we asked her to spell her name on the spelling board. Today Tracy used her new color-coded spelling board to elicit whatever she wanted to tell us, but it took some getting used to. We didn’t want put words in her mouth (so to speak) by assuming what letter she might choose. As she responded, I took down the letters as he called them out. She signaled, “I want w” and then chose the row that started with the letter I, but bypassed that letter. Tracy told her that selecting a letter any farther in that row would not make a sensible English word. The nurse came in about then, so we all took a break. Spongebob was on at 11am, and she watched some of that until the ICU doctor came in. He asked her questions until she was able to indicate exactly where she was having pain, and they scheduled her for an X-ray. The team decided to put her back into bed and do some “personal maintenance”, so we stepped out for a while to give her privacy.
Once she was back in bed, Tracy tried the spelling board again. She seemed to pick up where she had left off—continuing with “wake me”, although she did not indicate that that was the end of the word or of the sentence. If put together, she said “I want wake me”. I am not sure that that is how she meant it, or if that was the complete thought, but it certainly was nice to see them working together.
Tracy’s glasses had broken last night and he had to get some made before dark (as he only had sunglasses to wear), so he explained to Sara why our visit was shorter than usual. I know that he has been disappointed too that he has not experienced what others have reported here in regard to movement or smiles. So when Tracy asked me if I had anything else to say to her, I asked “Can you smile for your Daddy?” (Sorry, I think that’s what she used to call him, and I just can’t use the term “father” as I have never heard her refer to him that way), and there was no response. Then I asked, “Would you like to smile for Daddy, but you just can’t?” and she indicated, “Yes”.
Rather than make a whole new post for today, I figured I would just add to this one. Looks like Tracy and Denise where the morning shift, and I was the afternoon
ReplyDeleteWell today went much better with Sara than last week. I figured out that a joke I had made didn’t go over well with her. I explained that I didn’t mean to offend her. We are ok. When I got there, Sara had only been in the chair for about an hour today. She was happy to see me and active at first. So I asked if she wanted to watch a movie. I brought Galaxy Quest with me. She said she had never seen it and we had a good time watching it. It was so cool to see her smile and laugh at all the funny parts in the move. After the movie ended it was time for her to get her wash from the nurse. I grabbed a cup of coffee and when came back about 40 minutes later. Sara had a strange look on her face, and I asked if she was Ok. She said yes. She was crying a little, so I asked if she was worried that I had left. She said yes. Talk about a heart breaker. I had told her I would be back when she was done. When I didn’t walk in the door when the nurse was done, she had assumed I left. I told her I would be there for a bit more and she was happy with that. I then did what has kind of become our weekend ritual. I Put lotion on her lower legs and feet, and some lip Balm on her chapped lips. She said it felt better. I asked her if she was sleepy and she said yes so I tuned down the lights. She was still pretty wired and would not let herself fall to sleep. I put on some music for her. Asked her if Alia Keys was good and she said yes. Finally at 9 pm. I had to leave. Normally I like to leave when she is a sleep, but she wasn’t having it tonight. So I told her I loved her and I would see her soon.