Sorry for the duplication for my FB friends who are also in this group, but I meant to post this here and not on my personal wall last night. (You dont have to read it twice. Ha.) I had another phone consult with Robins therapy team today. I love that they do that once a month. It gives me a chance to hear from each therapist, plus the director of nursing and our case manager, how Robin is doing, what kind of progress shes making, and what specific things theyre working on with her. The Readers Digest version is that shes making good gains in every area - behavior, PT, OT, speech, and theyve been able to reduce some of her medications as well. If you dont care about the details, skip waaaaaay down to the bottom. If youre interested in what she does all day Monday-Friday, here ya go! Behavior - While she does get agitated with a couple of the other residents in her cabin who can be loud when having their own issues, shes gotten easier to redirect and focus on other things. She still enters escape mode sometimes when in the cabin, but behavior issues during therapy are practically non-existent anymore. Thats huge. Her sleep patterns have improved the past couple of weeks, which means shes not getting up every morning at 4, disturbing others and wanting to start her day. Also her safety awareness has improved. Shes asking for help with tasks that require help, rather than trying to do things by herself and then yelling for help when she gets in a bind. And that has resulted in them decreasing her level of supervision from constant supervision to frequent visual checks (meaning she can be left alone for short periods of time, like in her room listening to music or whatever.) Thats huge too. Speech - This is obviously language skills, but also includes eating. Her hand tremor was so bad she couldnt feed herself with a fork or spoon, so they changed her diet several weeks ago to chopped finger foods, and that has worked well. The tremor has gotten better and now theyre working with weighted utensils to help her gain some more independence in feeding herself. Theyre also doing exercises to improve speech intelligibility, tone and volume. Shes made great gains with all three. She talks pretty loud and high-pitched, but thats getting better, and with verbal cues shes becoming more conscious of it all. Her comprehension has improved, and shes gone from following one-step commands to two-steps pretty consistently. Her yes/no answers are much more accurate. They also work on naming objects, which she often needs cues for (like the beginning sound of the word), but shes made great gains there as well. They work on sight words, and shes gone from 20% accuracy to 80%. Id say thats pretty good! And shes up to 70% accuracy on signs in the community. Oh yeah - the coffee shop I told you about recently. Robin is still in charge of calling everyone on the phone and telling them the coffee shop is open, and what theyre serving that day. They said many have commented on how much her speech has improved, and how much better they can understand her. She went from, Hiiiiii! I LOVE you! two months ago, to actually knowing what she was calling about and articulating pretty well. :) Physical - Im really excited about her gains in PT. Its still the most challenging for her, and the area theyve really had to work to come up with ways to motivate her to cooperate. But, for instance, in the beginning she was completely non-compliant with pedaling the bike, and now shes 100% compliant. They learned to make that the first thing she does in the morning, get it out of the way, and give her a carrot - something to look forward to - to motivate her to get done. But now its not as big a deal because shes compliant. Oh - and her right leg & hip are getting stronger. Initially she had trouble keeping that foot in the strap in order to pedal, and they were having to hold her leg to keep it in there. Now they seldom have to help her with it, which means shes gaining hip control. Once a week they make her walk down the hall (about 100 feet) with a walker, and theyve gone from 2-3 people helping (one moving the walker and 1-2 holding her up) to one assisting her with balance, and her moving the walker by herself. They only make her do it once a week because its a genuine challenge for her. They said with her gait restrictions, 100 feet is a marathon. I asked if they thought shed ever be able to walk on her own, with or without a walker. They feel that for the most part shell be wheelchair bound but down the road may be able to walk short distances with a walker. Im okay with that, but Im also prepared for God to do whatever He will to confound the experts. :) Occupational - Shes made great gains in mobility and range in her right shoulder, and shes much more tolerant of those exercises. She went from 20% range of motion to 100%. They still work with getting her right hand/fingers to open up and stretch out. Shes non-compliant with wearing her splint, but theyre working on it. (If youve been following us for long you know shes Houdini, and that splint is childs play.) Theyre also working on her tolerance for standing. She could take about 20 seconds when she got there, a couple of weeks ago was up to 2-3 minutes, and last week she stood upright for 10 minutes! She initially HATED the task of standing, but now she tolerates it much better. Theres been much improvement with money tasks (grouping like coins together; also grouping coins with labels: 1 = pennies, 5 = nickels, etc.) and she can recognize/name numbers up to the upper 60s. Coordination has improved greatly as well. For instance, when putting pegs in a pegboard, she was doing 25 in a little over 5 minutes; now she can do it in 3 minutes flat. I guess thats it. If you waded through all that, you now know just about as much as we do about Robins weekly routine. I worried about her over the weekend since we didnt get to see her, but apparently her confusion about the passing of time worked in our favor. The case manager asked her about her weekend and mentioned mom and dad, and Robin acted like we had been to see her. So thats good. I think. Please keep praying that well know what the next step is. I pray that Robin will keep improving and theyll keep her as long as shes making progress. Its a long time to be away from her, but in the grand scheme of things its a drop in the bucket of time. Were so thankful for the Timber Ridge door opening. God has been so good to us. He still sends people to encourage us and bless us and let us know were not walking alone. I wish I could tell you all the ways He shows up. I cant wait for Robin to know the things people have said and done, all the times God has sent someone just in time with a word or deed. God bless yall...
Posted on: Wed, 17 Dec 2014 13:03:55 +0000
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