Rachel has an arm immobilizer that she has to wear on each arm for 30 minutes per day. She wants to pull her arm up and back (with her hands by her shoulders) so this holds her arms down and give a chance for the muscle behind her shoulder to stretch out. But she HATES it. Today Luke taught her how to escape so now she's a mini Houdini! She no longer pulls straight against it but has figured out how to slide her arm out sideways. Then Luke would put her arm back in and she'd get out again. Finally she gave up and made crabby noises at Luke about it. She's so cute!
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Sorry, Rachel's back into her "fall asleep at 3pm and wake up at 2-3am" so I only get to see her at 5 am for a few minutes in the morning. Rachel's been doing great with pushing her button at home. She was just happy happy happy. Then the next day she was bossing Kari around and smiling as she was crabbing at her. It was pretty funny. The other day Kari was letting her taste candy and was able to get Rachel to repeat after her, "More, please".
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We had another UMD appointment today but Rachel was so twitchy (from the med change?) that she didn't participate until the last 10 minutes of the session. It was only an hour this time and Kari was with too. I was so thankful she did so well last time so that they all knew she could do it, it was just an off day. Then we stopped at my mom's and let Rachel eat lunch. Since we were in town we swung by Miller Dwan and got her baclofen pump turned down. It's now at 35, the highest it was ever at was 160. Then we went shopping at Old Navy and Gymboree and I was able to pick up some great deals on clearance for Rachel. Rachel was a good shopper and she had a nice afternoon out with the girls.
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Rachel's been doing well in school and therapy, sorry for the lack of updates but we've been really busy. Rachel has started doing her own personal daylight savings time that she seems to do every winter and has been waking up at 3 am. This morning she was up at 1 am!
Rachel had a neurology appointment and we're going to stop giving her Klonopin in the afternoon and give her a bigger dose at night. Her Keppra at night is up as well and her baclofen will be turned down next time we see Evey (the RN who runs the baclofen pump program at Miller Dwan).
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Here's Rachel with her pumpkin as promised. She woke up at 3 that morning and we kept telling her that she wouldn't get to go trick or treating if she didn't take a nap... but she didn't take one.
She still got to go trick or treating anyway. It was soo cold, so we did quick warm up stops inside the police department where they were handing out glow sticks and the library. She had a great time and was smiling. We went with neighbor's who live down the block and their kids and Hudson had a blast having other kids to run around with. And no... you don't recognize this costume. I promise.
Kaleigh did a great job riding in the bike trailer/baby stroller with the neighbor baby.
And here's a close up of her in her costume.
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On Tuesday Rachel got to help with her jack o'lantern. Kari drew out shapes that Rachel could choose to use for the eyes, nose, and mouth and then when I got home I drew them onto the pumpkin and cut it out. I'll take pictures of the kids tonight and will be sure to get one of Rachel with her pumpkin. Then Kari and Rachel helped make pumpkin bread. Rachel got to stick her hands in the pumpkin goo but I don't know if she liked it as much as she did at school. Rachel was paying very close attention to everything that was going on while in the kitchen and was doing a good job answering our questions with eye blinks.
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It's been such nice weather out that we took another walk down to the library to pick out books. Hudson, Kari, and I were picking them out and our bag was very heavy when we left! (It was a long walk back up the hill, oof!)
Today Rachel had her Halloween party at school and she was a woodland fairy. (For those of you that were reading this site last year, yes it's the same costume but Shhh! Don't tell anyone else!) The wings are supposed to velcro onto her back but I used some of the extra velcro we have laying around to help the wings stay put nicely on her wheelchair. Rachel came home smiling like crazy (and with a big bag of candy).
School has been going wonderfully for Rachel, she's really a part of the class this year. The kids will get a stool or sit on a table to be at eye level with her while she's in her chair and Taylor will get her purple tomato chair all ready for her to sit in for circle time.
Today we went shopping for a winter jacket and it came with a matching scarf and hat. Rachel wasn't very impressed with L&M but she loved riding through the cramped aisles of Herbergers and having the all the colors and soft PJ's brush by her arms. It made me think that those were the perfect PJ's to get her for Christmas, she doesn't have a lot of warm PJ's for winter. (I'll add it to the list...)
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Rachel loves laying on her stomach. If a little pillow is placed under one of her shoulders, it tilts her just enough to make sure her trach isn't blocked in any way. Yesterday Kari had Rachel on her tummy and when she went to turn her back onto her back Rachel kept her legs bent in a 90 degree angle behind her so that Kari couldn't roll her onto her back. Kari asked if she wanted to stay on her tummy and she blinked twice for yes.
Her Speech therapist wants us to play preschool age boardgames with her. So I'm going to add a couple of her ideas to the Christmas list after I figure out which ones would work. (Candy Land, Chutes & Ladders, etc.)
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Saturday we met our friends Brooke and Austin and their kids at the Depot. The Children's Museum wasn't as cool as it used to be. Shoes? Really? Bring back the castle, costumes, and hobby horses! I don't know what they were thinking. Anyway, when we got to the Train museum there was a magician show that was just about to start. Rachel watched him very intently and when Luke asked if she thought he would be able to get free she blinked only once and verbally said "Noo". Then Luke carried her into the caboose and I carried her through the dining cars and she really liked it.
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Rachel didn't want to work very hard yesterday so when it was time for her to be in the stander she yawned as if she was tired. Kari could tell she was faking and told Rachel she knew what she was up to. Rachel grinned and thought it was a great joke. She did it again when she was supposed to be working on holding her head up. Stinker!
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Here's Rachel and Kaleigh hanging out on Rachel's couch.
Here's Rachel's communication board that we use at home.
Here's Rachel ready for her first day of school.
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The My Tobii is a computer that has a touch screen. There are small cameras in the bottom of the frame of the screen that determine what Rachel is looking at on the screen, allowing her to "push" the buttons on the screen using her eye gazes. When she looks at a picture on the screen, we can tell where she's looking because a little purple circle fills up like a pie chart over the image and when she's looked at the same picture long enough the circle is complete and the computer says the word or phrase that the picture represents.
Rachel did just awesome, the funny thing was they weren't prepared for her to do so well. I wasn't suprised but I was worried she'd be tired and not cooperate. They said they've never had anyone pick it up as quickly as she did. Other people would take 45 minutes to do what she did in 2 minutes. I don't know if it was even that long. As soon as they had the pictures up on the screen she was looking at them. They had a folder of screens they had thought would be too advanced for her but they quickly realized that wasn't the case.
The first screen was a picture of bubbles more than half the size of the screen and Rachel kept "pushing" it, they'd move to a smaller picture on a different side of the screen and she'd of course find it right away and "push" it. They read a book and the only option they gave was "Turn the page" so I explained that Rachel has a whole board of "read the book" options at home that Kari goes through with her all the time. Needless to say, this was a piece of cake for her too. Then if they went to a menu screen Rachel would be "pushing" buttons and almost recalibrated the computer! They learned quickly to cover the cameras on the bottom.
The only problem came later she wasn't looking over at the objects on the left side of the screen as well. If I encouraged her, "Okay Rachel I know you're working hard, can you look over at the ball?" Then -boom- she did it right after that. But otherwise she was looking at the two pictures on the right side one after the other.
Then we took a break while they put all the pictures on the right side of the screen- maybe 8 or so to have Rachel say how she wanted to play with the baby doll. But after the break Rachel was coughing more and kind of crabby. She wasn't selecting very many of them and none of the purple cicles were showing up so I couldn't tell what she was looking at either. Then I asked her to look at the pink square blanket and -boom- she picked it right after that and didn't even look at the others first. Then a little while later I asked her to look at "get dressed" and the same thing again, she looked at "get dressed" without even glancing at any of the others first. So I'm not sure if it was that she was crabby, sleepy, or what was going on. Once I asked her to do it, she did it pretty quickly afterwards.
Rachel had a great time and we're going back on November 9th to do it again.
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Sorry about being so bad about updating. The usual stuff is going on, nothing super new. It's just all happening at once so I've been bad about uploading photos. Today we're going to UMD to work with the speech therapy clinic on seeing if Rachel will be able to use a My Tobii. It's even cooler than the Dynavox she had last spring. But she'll probably be really sleepy by the time we get down there. Rachel's been slowly working her way into her winter sleeping schedule. She'll wake up at 4 am and fall asleep by 5 pm.
Bill called! He'll be working in the area again so hopefully he'll have the chance to stop by and visit and see how big Rachel and Kaleigh have gotten.
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This weekend wasn't too exciting. Luke went to the Cities for a conference and stopped at IKEA and brought back a new dresser for Rachel. It has seven drawers and is a little bit bigger than her old one. In the beginning I was teasing her that she was going to need to go clothes shopping to fill it up but after I finished transfering everything over and reorganizing stuff in her closet she has it decently filled. (Darn it.)
I'm going to have to go through her paperwork again and see what we can get rid of as well, one of the old drawers had paperwork in it and I won't do that to this dresser because I'm concerned the bottom of the drawer would fall out. So yeah, I'll be organizing paperwork and catching up on my school stuff so it will probably be a bit longer until I update with photos.
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Luke was teasing Rachel about all the boyfriends she seems to accumulate at school. He said, "That's it Rachel, I don't think I can let you go to school anymore."
And in her Rachel-voice she said, "Noooooo."
She said it with a big smile on her face because she knew he was teasing.
We're trying out a neck orthotic that will help hold up her head when she using her walker. Rachel seemed to like it yesterday.
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