(*side note - I have no kickbacks from anything I'm going to say in regard to therapies. I am posting the links for the PWS parents who will come here for this information so it will save time answering questions later on)
I have a set of headphones and CD's and the OT also has a set of headphones, but her music is on an Ipod. Her headphones are also bone conduction, where mine are ones recommended by the company but without the bone conduction aspect (it was too expensive). While the therapy itself is part of the OT session, the equipment we use at home was an out of pocket expense for us.
Frances does OT with her twice a week and uses the headphones during the session; and I use them with her every day, twice a day.
The first day we just tried to get Livi used to the headphones. She really fought them at first, but we tried repeatedly until she became more comfortable with them on. Once the music was on, she was entranced. When Frances took the earphones off of her, she gave me one of her very rare, super sad faces where her mouth turns down into a perfect upside down U - an expression that I think is uniquely Prader Willi.
That evening, I happened to notice her run through the kitchen. It took me a few seconds to realize that for a few brief seconds, she looked like a normal two year old. She ran without the lopsided loping gait that she has momentarily before lapsing back into her normal run. I really thought that it was just a coincidence at the time.
The next morning I saw her try to put the earphones on her own ears. I just stood watching her for a moment try to figure out how to do it and then helped her. She was so close to being able to coordinate it that it really surprised me. I played the music for her to listen to while I was getting the girls ready for school and making breakfast. When it came time to take them off, she got extremely upset. She began crying without moving or making a sound; only standing there with that upside down U and super sad face all screwed up in misery, shoulders slumped. She ran off after that and as I put them away, I noticed she was hiding behind a huge quilt we have hanging in the hallway. I thought she was playing at first, but when I went to pull back the quilt I saw her crying silently to herself. It was such strange behavior for her - she's always so sunny and cheerful, especially in the mornings.
Lesson to self: Turn the music down slowly, let the earphones sit for a minute and then remove while distracting. The sudden change was too abrupt for her.
It's kind of hard to describe, but as this continued over the last three weeks, I kept seeing more and more sparks and flashes of behavior that I just couldn't put down to coincidence anymore. She is absolutely enamored with the music. She is responding more quickly to commands; I've seen her run way more than I ever have and with more coordination; she's more involved in conversation (even though we can't understand her) and somehow she just seems to have more cognition in general. This doesn't mean she's acting like a normal 2 year old by any means, but for her the improvements are a big deal. They are subtle changes in some ways... the best I can describe it is that it seems like her processing power just sped up a few degrees.
So yesterday we added another wrinkle to this - I gave her a liquid supplement called Pearl's Daily B for the first time. I personally favor this supplement as the man who sells it has it manufactured for his beautiful daughter and her unique needs.
OH. MY. GOODNESS.
She was on fire all day. At the PT session (2 pm) she was racing around with so much energy that it was commented on. She was zooming up and down stairs, chatting and singing away, riding bikes and just generally being rambunctious. At school they commented on how engaged she was all day. And at home she was like the energizer bunny. She even ran through the house several times - running flat out, using all four limbs in proper position. I don't know if it was the B, or the therapy or both.. but it was just such an obvious change that people outside our family commented on it.
We had a weekly bible study at our house last night. One of the men who has only been here about 3 times commented on how alive Olivia seemed and how he had never heard her talk so much before. She was just babbling away, running up to him and hugging him and running around having fun.
At the end of the study, we were all saying our goodbyes when out of the blue we heard a very clear "BYE". So clear and loud, in fact, that one of the women who came to the study thought it was her son saying it. We all looked kind of astonished and looked at Livi who realized that this was a cool thing, so she kept saying it over and over again. Typically when she speaks, her words are very slurred and she sort of whispers them or mouths them without sound. She has said "bye" before, but it has always sounded something like a tired old Southern lady saying "bahh" with her voice dropping off at the end. She has almost always dropped the last sounds of any word she's attempted and most of the time she literally sounds like she has marbles in her mouth while at the same time speaking gobbledygook. This time it was a loud and clear "BYE" with an emphasis on the YE.
I don't know if it's the ABT therapy, the B vitamins, or both. I've tried hard to keep a level head about the things I've seen. At first I thought they were coincidences since I felt that surely it couldn't work that quickly, even though what I was seeing was subtle. But all these coincidences are adding up for me. I feel like we are seeing real results - It was so notable that in the follow up email with prayer requests sent after the meeting, our fearless facilitator wrote this: "Praise that Olivia has been responding positively to some new treatment approaches. She has shown an improvement in her development. Monday night she very clearly said bye to Janis and this has never happened before where she spoke so clearly. What a joy to see a miracle happen right before our very eyes! "
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Ayden Jane gets pure unbridled, some times out of control energy from cyancobalamin. I also add some methylcobalamin and it really helps... hmmm even out the energy and make it more useful? And helps her play hard, sleep hard... no vegging out time. Glad to hear Olivia is doing so great!
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