We had a family conference with Emilys therapists yesterday. They are impressed with the amount of work that we have done over the summer with her, basically motivating her to do more for herself. As much as she can, while keeping her safe, and then stepping in to help where needed. For instance, we are now doing her teeth brushing at the sink. We help her to stand up, set up her toothbrush for her, and she holds onto the counter with one hand while brushing her teeth with the other. While she is doing this, we stand next to her with our arms around her- but not touching unless she starts to fall. She tends to wobble a lot trying to keep her balance and timber. At the beginning of the summer her brain did not know when she started falling and she would just keep going. Now she is at the point where she can right herself about 50% of the time. In PT, she has been working on balance, sit to stands, posture, bed mobility and standing endurance. If Emily stands for more than 4 minutes with her walker her hips start giving out, her knees start buckling, her legs shaking. She tends to put all of her weight on her right leg, her left foot and toes not completely touching the floor. She is doing her transfers as a pivot transfer, using her walker with total assistance. She needs verbal cues on where to move her feet, and sometimes physically we place them where they are supposed to be. Holding on to her walker with my hips, using my hands to tap her legs, and guiding her feet with my feet- its a pretty delicate dance we do together. PT has not worked on walking all summer. Its hard to comprehend- you would think walking again would be the be all, end all to this process. But if she cant sit up in bed and get herself to the edge of the bed and stand up- there is no walking. If she cant keep herself upright or control where her foot gets placed- there is no walking. She cant do any of those things yet. Her brain is not sending the right signals to her body for all of that to happen. So, we keep working. In OT, she has been working on a variety of things and has probably shown the most functional improvement over the summer. Its easier to measure the task as completed when she can open a pack of gum on her own, put on her lip gloss, or finish a plate of food without asking for help. In ST, she has dropped down to 2 hours of therapy a week. They are working on some math, some reading, and cognitive skills with distractions. We think the upcoming school year will help keep pushing those things along. She will be taking functional math in a resource class this year and I am hoping her math skills will improve. She is still very confused with math- adding single digits with her fingers only gets her answer right about 80% of the time. Subtraction is much lower than that. All in all, we continue to plug along. A goal we just started working on in PT is floor mobility. Trying to teach her how to assist in helping us get her off the floor will be a huge help. She has had some falls and they are traumatizing. Her PT wants us to be able to put Emily on the floor at home and let her figure it out, like you would an infant. Let Emily figure out how to move her body and stretch and exercise from the floor. Start at the basic level where it is safe for her to explore. Emotionally, Emily has been much calmer and happier. I attribute this to getting off of the Keppra (replacing with another seizure med- Lamitcal) and getting on Synthroid (replacing the hormone she was missing all these months). She is still very OCD, and gets things stuck in her head. For instance, if she knows there is a can tab in the car then her brain will not relax until she knows that I go out there immediately and pick it up and then put it in her ziploc bag. She gets very frustrated if I do not do the task immediately. I think this is partially due to her getting frustrated with not being able to do things for herself, and partially because she is so worried about forgetting that she focuses extra extra hard. Anyhow, thats where we are today. Thankful she is alive and here with us every day. Still as strong-willed as ever. Its almost been 21 months, we are all beyond exhausted but she keeps us going.
Posted on: Fri, 22 Aug 2014 15:29:27 +0000
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