Friday, January 31, 2014

Getting Back on Track

 Well, today begins Lucy's fourth vomit-free day. She did not have a day for about a week and a half where she didn't throw up at least one feed, but she has kept everything down for the past three days, and is doing well so far this morning. It was completely exhausting for all of us. Her especially because not only is it exhausting to throw up, but she was not getting anywhere near the number of calories that she needs, so she had decreased energy again.

On Tuesday, she really started perking up and I wanted to share the things that she said to me throughout the day. I added a button to her Tobii for her to say she wants to use her paper book, which she hasn't used in quite awhile. Much to my surprise, she requests it often. But really, I guess I shouldn't be too surprised; when she was more able to use it before, she loved it very much. So anyway, on Tuesday morning she said she wanted to use her book, and she was a little upset, and she said, "I want (do an activity), want, hug, it's about now." Translation, if needed: she wanted a hug right now!

Later, we were playing baby dolls, and here are the things she said on her Tobii, with the PODD version she has on there:

"I, dress, put on, doll, brush hair."  "Beautiful"
"Bed, hugs and kisses, teddy bear, sing/song, crib, goodnight"

And here she is giving hugs and kisses to the dollie she chose to play with, thirty year old Loraine Loren who was mine when I was litte. 

I have pictures of all of her doll babies on her Tobii so she can choose who to play with and then through the PODD she first said she wanted to change her diaper, and then dress her, and then put her to bed. She also chose that night gown that Loraine is wearing. 

Later in the day we were sharing a snack of mini Oreos which Lu has discovered she loves, and she said with her Tobii: "we, our, like, favorite, good". 

We also have a great set of books by Eric Carle for learning to match words with pictures and we have started working on just two words a day.  The book pages are split in the middle so we can match the words with the picture:

After practicing them a few times, we have been making some kind of little picture or poster to reinforce the word. After we had done four words I made a little "game" on her Tobii with the actual pictures that she made and gave her two word choices below the picture so she could practice matching the correct word to the picture on her own, and she has matched all four correctly at one time or another! Here is a picture of one of the game pages:

One night at supper, after showing her Daddy how she can read words, she said she wanted to use her book, and she proceeded to say, "I think it's, you, fun, not school"! I asked her if she meant that she likes doing school things at home with me better than going to school and she emphatically nodded yes! (Music to my ears!) And then yesterday during speech, she told her therapist, Roxann, that she wanted to use her book, and she said, "Use the bathroom, sit, pee" and I took her in to the potty and she peed! 

I'll tell you what...I hate that feeding tube, the actual physical presence of it, I mean. It makes me nervous, and the hole into her belly totally freaks me out. It is healing fine, but still really grosses me out as it is kind of gunky and you know, just a hole directly into her belly! We had to already put silver nitrate on a piece of granulation tissue to cauterize it, and that was a little terrifying. A few weekends ago we packed up all of the supplies for a day of visiting our family in DuBois, and I cried half the way there because it is just so much stuff, on top of all of the stuff we already were used to bringing along with us. And it makes me nervous to be away from home with her because we have a routine here at home and everything we need is here. And last weekend, Lu had a feeding at Mom's while I had lunch with a friend and Chad just had some down time at home, and after I dropped everything off at Mom's, I cried again.  BUT, even though I hate it, I really do also love it because it is making Lu's life amazingly better, and anything that does that will have an uncontested spot in our lives. 

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