Day 34 Music Rules the Day and Day 35 Painting is the name of the game today!

Day 34

We were treated to a day of music and dance. First up a group of teens who did hip hop from Church Without Walls. Katie really enjoyed the show.

Then it was a day of errands and more bus rides. Thankfully, they are going better and we don’t talk about…well you know… and she’s done fine. 🙂 Almost as soon as we got back, I SAW HIM!! The first person I’ve seen in both a cowboy hat AND boots since coming to Texas!!

He was a good sport to let me take his picture.

And both Katie and Kira loved the show!

Katie is starting to have tremors in her hands again when lifting things, esp. heavier items. She is, however, re-feeding herself some, even though it is finger feeding for the most part, she is using utensils again (at the level before the trial) and it seems her appetite has picked up a bit. This is a relief. She’s had another good day and “seems” to have adjusted to the regression of skill and seems to have leveled out now to where she was skillswise. She has not attempted to leave the room for the last two nights, which is also a relief, but then I do have it barricaded very well, lol.

Day 35IMG_4225

Today was the day for the kids to paint tiles. I picked them up a couple of weeks ago. The tiles were donated by The Mad Potter and I bought the paint. All the spots got filled and they did a great job! Katie picked through her breakfast the whole time and by the time the kids were done, it was time for lunch, lol, and then she picked at that. Sigh, I THOUGHT her appetite was coming back. Still, it was a super fun morning. Then, we were off to do our own painting because the plate I made for Texas Children’s accidentally got broken last night, so have to do a “do over”. I am a bit disappointed, only because it won’t be ready for Christmas like I wanted, but I like the way it’s coming out and I found a lighter blue for the sky, which makes me happy, in addition to doing the flowers a bit different, which I think will turn out nicer as well. 🙂   Katie had fun painting today, but as you all can see, her skill level has dropped significantly.

There are no lines, she did not choose different colors, and she stayed in the same basic area and did not fill the tile, though she had as long to do so. In addition, her verbalizations have pretty much returned to her “basic vocabulary”  and babble, there continues to be a few words that are clearer than usual, but I sense they are also fading. On the VERY POSITIVE side, she seems adjusted to this fact and is happy. Thank goodness. Thank you to everyone who continues to support and comfort us during these trying times. We are very grateful. I read every note to Katelin and I feel that this has helped her come to terms with what she is going through, so thank you all very much.    

This entry was posted in Rett Syndrome, Trail to a Texas Trial, Uncategorized. Bookmark the permalink.

5 Responses to Day 34 Music Rules the Day and Day 35 Painting is the name of the game today!

  1. Rose & Renee says:

    How nice to have a friend there with you. You’ve done an awesome job and I tell Renee about you all of the time. We are all very proud of you,

  2. Nicolas CHARLES says:

    OK so I wish you a Merry Christmas, dear Katelin, from France. Santa Claus is coming tonight !

  3. melelllan says:

    Nicolas, thank you. I read this to her and she smiled 🙂 Santa is her favorite guy.

  4. Linda E. Williams RN says:

    Each day that you and Katelin are together is a blessing This on-going test period had been like a vacation from reality–as all vacations are supposed to be; at the end we come home with good memories, and you have many of those. So looking forward to seeing you in the new year. May it bring more hope and health your way. God bless. Love and hugs, Linda W

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