Rachel's doing well. She still hasn't gotten sick yet this winter. She also hardly throws up at all anymore. It takes a while to notice the lack of something but it just dawned on me the other day. She used to throw up a few times every day... then it settled down to a few times every week, then she used to get urpy at almost every 5pm feeding but now she's doing great and it's only a few times each month!
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Rachel is having a blast playing with her new Christmas toys. She had fun playing board games with Kari. Kari will make her identify the number using her communication board when she spins the wheel to find how many spaces she can go to help Rachel be more involved during the board game. She did really well.
Today Luke was asking Rachel if she knew what love meant. He asked, "Is it when you help take care of each other?"
"Yeah, yeah" she said in her little Rachel vocalizations.
Then she made a vocalization that sounded very much like, "Love ya".
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Rachel had a very fun, very busy Christmas. She really paid attention to when we showed her the presents and she'd get a little distressed if Kaleigh came over to steal a toy. This year she was able to stay awake for her presents.
My great grandmother got her a musical Tinkerbell snowglobe that has a little fan to blow the snow around inside. There's a switch on the back to make it stay on all the time so I was able to adapt it to work for one of Rachel's switches! Now when she practices with pushing her button, she can watch the snow whoosh around Tinkerbell and hear the song playing. Those kinds of toys are really hard to find now so I was pretty excited that now she has something other than a bubble blower to use her button with.
She received many wonderful presents and got to see lots and lots of family.
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Today Santa, a reindeer, and an elf visited Rachel's class! Rachel was really watching Santa Claus and had her best smiles today! She really liked her candy cane that Santa gave her. She also received hair ties and more candy for Christmas from her teacher!
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Sorry I haven't updated in a long time. Life is crazy but now I'm done with school for a month or so and I can catch up with a lot of things that were sitting on the back burner for a while. Like updating! Rachel hasn't gotten sick yet this winter so we're hoping she successfully evades pneumonia this year. We're busy finding someone to be a full time PCA as Kari goes on maternity leave. Rachel continues to love school and have a great time with fun art projects, songs during circle time, and playing with the other kiddos.
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On Thursday Rachel had made a Christmas tree out of pretty pieces of paper glued onto a green construction paper tree. Luke asked her, "Did you make it for me?"
She blinked, "No".
"Did you make it for mommy?"
"No"
"Did you make it for Hudson?"
"Yes", she blinked and she also said "Yeah" verbally as well. Hudson was very proud of his little sister.
Rachel had a great time at school, she loved when they did Christmas music during circle time and got to ring bells. She had huge smiles the entire time.
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Rachel had a fun day at school. She got to roll on the therapy ball which she always loves. She also had a blast getting messy with paint and glitter during her art time. I'm almost done with classes for the semester so I'll be better about updating afterwards. Well, until next semester starts!
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Rachel is doing great in school. She gets to play with the kids and they have all gotten to know her much better this year. One of the little boys played ball with her and a few of them played Barbies with her later that day. She's doing great in speech therapy too, identifying things that are the same or different. (I think, now I'll have to double check her notebook.)
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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