Rachel Nyberg's Website

Rachel's so cute! 
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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Wednesday already? 
I'll have to update more later, Luke threw his back out on Monday and we're all busier than normal.
In the meantime I will cheat and used Rachel's teacher's e-mail to update on how school went on Monday:
"Hello...Rachel did great yesterday. It is so nice, now that we split the class. I actually have time to sit with Rachel and do some work. We practiced colors...I'm learning from Kari how to interpret her gazes and blinking. She had her switch all programmed during circle time with color choices, a morning greeting and "Old MacDonald" animal choices. She stayed awake the entire class and I know she enjoyed herself. She had PT @ 8:30 and her Speech/Lang teacher came to assist her during Circle Time. During Art, she stamped different size apples on a tree and then stamped smaller apples onto the letter Aa."

Thanks Dina!

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Busy weekend 
We made a quick trip to Duluth over the weekend. We went down Friday and had a great time hanging out with friends for the evening. Then on Saturday Luke helped my dad (and grandpa and uncle) reroof my parents' house. That took 12 hours and then we drove right home. That was in just enough time to get up early for church the next morning. Kari takes care of Rachel in one of the nurseries so we don't have to worry about Rachel needing suctioning or her legs getting chilly from sitting too long. When we went home for lunch, Rachel took a nap and I got caught up on my school work. On the last Sunday of each month we get together with people from our church that live in the same area that we do. We actually live about a half hour drive away from church so it's nice to hang out somewhere more local. The weather was beautiful and we had a great time.

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Thursday school day 
I didn't get a chance to talk to Kari after work on Thursday so I'm updating from the communication notebook. ;)
"Rachel was smiley this morning, fixed her hair then off to school. Rachel seemed to enjoy herself. She colored a book about fall and was very vocal during occupational therapy. She "danced" and then watched all the kids crawl through a tunnel and act wild. She was all smiles and very vocal. She had two friends around her today, Audrey and Taylor. She did a little talking to them. They also played a game where they passed a ball to each other in a circle."

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First Day of School! 
I'll update more later (with a picture even...) but today I took a half day off and brought Rachel to school this morning. She had great day and was awake the entire time and hardly needed any suctioning. What a big difference since last year!

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Little better 
Rachel didn't go to therapy on Wednesday since she was still sick. She's feeling a little better and slept well last night.

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Rachel's cold is doing okay but she only slept 4 hours last night and her heart rate is up which I'm never excited about but her oxygen levels are fine so as long as we don't let the gunk in her lungs sit in one spot too long she should do just fine. That's where her vest treatment comes in handy. It makes it easier to cough out all the gunk in her lungs. Since she's not up and bopping around she could have a tendency to have it build up in one spot. Then the gunk could possibly get infected and cause pneumonia... which is nooo fun. But we knew this was coming because Luke and I both had colds so we caught it very early and it shouldn't escalate into a bigger problem.

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Wheelchair day 
On Monday Kari, Rachel, Kaleigh, and I (all the girls again!) went up to Hibbing but instead of therapy Rachel got off easy. We met with all of her therapists and her medical supply company and talked about what she'll need for her new wheelchair. The one we've been using lately is a demo. Now that we've used it for a while we know what we like about it and what we need to adjust. We also learned ways to use it that we didn't realize were a feature until then. The supports at her sides have buttons to make them swing open to make it easier to pick her up out of her chair.... but we didn't know that until yesterday. ;) Kaleigh did a pretty good job playing in the therapy room. She's walking a little more now and for longer distances.
Rachel's getting the cold that Luke and I have had for the past couple of days. She was up at 4am and not feeling very good so hopefully she kicks this soon.

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On Sunday we went for a family walk and ended up at the park. Rachel went down the slide with Luke and rode on the tire swing with me. We were figuring out ways to add a swing to Hudson's fort that Rachel would be able to play on. Now that I'm thinking about it, I think I'll google it right now... :)

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Rachel's a little chunkier, she's gained 5 lbs! I have to e-mail the nutritionist and see if she wants to continue with the increased feedings. I also left a message with the neurologist's nurse (who is awesome) that the Klonopin doesn't seem to be cutting it for her now that her weight has changed.
Therapy went well, they did the usual stuff. Now that Rachel has school for three days out of the week we're going down to only one day of therapy. Rachel is going to be really busy!

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Today Kari and I took Rachel to the library. It was a bit of a bumpy ride but she seemed to enjoy some of it. We got really good at finding paths that wouldn't jostle her too much. Then we all picked out a big bag of books for the nurses to read to Rachel over the next few weeks. On the way back we were standing at the corner waiting to cross the street and a guy who had just parked his truck got out and blocked the oncoming traffic so we could cross. (There was a sign that says cars must stop at crosswalk, but even I don't remember to check for pedestrians waiting to cross myself.) It was very nice. The outing wasn't very long but it must have worn her out to get all that fresh air because she was zonked by 6pm and slept really well all night.

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Labor day weekend 
We had a nice weekend. Luke worked on Hudson's tree fort (sans tree) and Rachel even got to go in it! Rachel was up late that night so when Linda came in at 9:00pm Luke and Rachel were hiding behind the couch. As soon as she closed the door behind her they popped up and "suprised" her. Rachel thought that was a blast. But the fresh air and excitement of the evening must have worn her out because she slept hard until 6:30 the next morning.
Luke and I got a few projects done and Uncle Chris was up visiting so the weekend went by pretty fast.
Hudson's first day of school is today! Rachel starts on the 17th.

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Kaleigh started walking last night!

Yay Kaleigh!!

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Here's another quick update. Kari was playing with Rachel on the therapy ball. Rachel loves this game. One of the things we are supposed to be working with Rachel on is getting her to vocalize in order for us to do something. Even her usual "yah, yah" is fine. But Kari was asking her if she wanted to roll on the ball "again"? Rachel would reply with something that sounded very close to "again". Then Kari would let her roll back on the ball. They kept doing it over and over and Rachel's "again" sounded very clear. Even Luke got a chance to hear her.

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On Saturday all the girls went shopping (Rachel, Kaleigh, Kari, and me). I think Rachel loved getting out. She needed new shoes for school and we got her adorable boots and cute sneakers. Then we got a pair of jeans, shirt, and a zip-up hoodie to add to her new school clothes. It was nice to be able to try on the hooded sweatshirt to check the length. She's just growing out of 5T clothes and now fitting girls 4/5 or XS so it's nice to have the extra length that the toddler sizes didn't have. Kaleigh was getting fussy at the end of our trip so we walked quickly down the back isle and I think Rachel liked going fast in her chair too!
On Sunday Rachel wore some of her cute new clothes to church. She's doing much better not needing suctioning while she's sitting up. She's getting used to having her speaking valve on all the time.

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