August 15, 2014 I’m so sorry to leave you all hanging. I have written this post a hundred times in my head. In reality I have not had the time, the energy or the words. I’m pretty much hanging out at therapy (3x/week for speech and 2x/week for OT/PT), doing things with Victoria at home, working with school on figuring out schooling for this year, sitting at volleyball and oh yes, being a parent to Andrei, Alyssa and Brett as well! The Middle Place…that is how I would describe where we are at right now. Out of the crisis stage but not back to life as we knew it before. The question most asked is “How is Victoria doing?” Tim and I finally had to come up with a rehearsed answer because we aren’t sure how to answer that question. “Physically she is about 80% back to herself. Cognitively she is maybe 50% back to herself. We are at the beginning of a very long road.” In a conversation, it is hard to give more. Here in this post I will just give examples from our life and maybe you will understand how gray it is. She shows glimpses of her former self but a lot of the times she seems dazed, foggy or lost. She is still a bit weaker on her right side but that is predominantly in her shoulder, arm and hand. There are some things that still challenge her: writing, tying her shoes, cutting tough foods. She has strength but not endurance if that makes sense. When they gave her the strength test she tested pretty equal on both sides but that is holding something for 5 seconds. To do something for longer is harder. For example, carrying her water bottle which requires constant squeezing is hard. She drops it because she can’t continue to squeeze. We have been walking most nights and on our first night out we did about ½ mile. We are up to 2 ½ miles which includes a big hill. She is attending volleyball practice and games when she has the energy and time. Here is where the cognitive comes into play. She loves volleyball, but it is hard to go and not be a full member of the team. It is even harder to go and know that you can’t keep up with the conversations and interactions that happen. She likes to arrive late when the girls are on the court already and leave immediately when practice is done. Her processing is slow. The bleed happened on her left thalamus which is the processing center for the brain. It is the relay center. It is also the area responsible for language: speaking, listening, understanding, and thinking. For those of you who know me, you know I talk fast, move fast, live fast. The speech therapist told me I had to slow down my talking. We all need to give long pauses and let her think. I think God is getting quite a chuckle out of this one. Victoria will tell me to slow down my walking. She is not able to tell us to slow down our talking yet. We are hoping that she will find her voice through all of this and be able to speak for herself and her needs. Cognitively, she has a long road ahead of her. We love our new speech therapist. She has been working especially hard with Victoria to find her areas of weakness and her strengths. So far, we have quite a bit of bad news if you could call it that. Through the testing they have done over the last 2 weeks, it seems Victoria’s comprehension is low. The therapist thinks she’s getting maybe 50-60% of what’s going on around her. This includes all four areas: Thinking, listening, speaking, understanding. Victoria feels thinking is the hardest for her. In some of her sessions last week they started with simple unit sentences: Does a dog bark? Then moved to 3 unit sentences: Does the cow drink milk? Do children go trick or treating on Halloween? (Victoria admitted that she knew Halloween but couldn’t remember what it meant). She dropped from 90% to 65% by adding the third unit. Then, she went to a 5 -6 sentence paragraph and she got only 2-3 out of 6 questions right. She also did some testing with changing the speaker’s rate of speech. As her rate increased to a normal conversation rate Victoria’s comprehension fell. We cannot ask open ended questions: Why don’t you want to go to school? Instead, are you hesitant to attend school because: a) it will be hard for you b) you will feel different than the other kids or c) you just don’t like school. Victoria said all three. We did have an MRI last week and saw the neurosurgeon yesterday. The good news is the clot is shrinking and is about the size of a ping pong ball now. (It started out racquetball size.) He was pleased with significantly less swelling in the brain. The MRI did show that all is well with her veins and arteries. He doesn’t think it is an AV Malformation as previously suspected. So, we continue to look for the initial cause of the bleeding. We will have another MRI in 8-10 weeks which will hopefully reveal some answers. These are the verses that seem to be coming to me from all different directions: Isaiah 41:10 “Do not fear; I am with you. Do not be afraid for I am your God. I will strengthen you. I will help you. I will uphold you with my righteous right hand.” And Isaiah 40:31 “But those who wait for the Lord shall renew their strength, they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.” PRAYERS: That Victoria finds her voice to speak for herself, that she has the courage to come out of hiding and that we have the courage and strength to carry on. For her complete healing and full recovery. Tim and Joan
Posted on: Wed, 20 Aug 2014 03:32:37 +0000
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