Rachel Nyberg's Website

Pics of new stuff 
Whoo hoo! Rachel has a new chair! It's the same color as Hudson's bike. "Toxic Green" Luke was giving her a hard time for not smiling in the picture. He asked, "Well I guess if you don't like it, should we give it back?" Rachel said, "Uh-uh" in the normal way when someone says no... how do you spell that? Hmm it looks right but, well, now you know what I mean. :)

Rachel was really crabby at us for taking all these pictures and putting her in the stander so here's Rachel crabbing at Kari.

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New stander... well to us anyway 
We haven't really done much exciting this week that pertains to Rachel... Kari got pinkeye of all the crazy things to catch so Luke just decided to hang out with the kids on his own for two days. (instead of calling someone else in) Rachel is borrowing a stander from therapy that is much more comfortable. She was able to be in it for an entire hour and she didn't have to wear all of her extra supportive gear. With her old stander it would take 5-10 minutes just to strap her into her torso support, knee immobilizers, and ankle supports (SMOs). Now she only really has to wear the SMOs.

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Today Rachel practiced more with letter sounds. They would ask her a word and she would look at the letter it began with. She got H for Hudson right away. Now we have letters at home to practice and also small words like "in" and "out". I don't even know how she knows all this! She watches a lot of PBS and is read to a lot so that must be really sinking in. She is amazing us all the time!

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Congrats Naomi and Ryan! 
This weekend we picked up Hudson from camp and Luke and I went to Naomi and Ryan's wedding. We got a new camera on Wednesday so we have a bunch of pictures already, here's just a few.

Here's Naomi looking gorgeous:

Here's Rachel on the car trip down to get Hudson:

And Hudson and Karina asleep on the way back home after our busy weekend.

We also had fun taking pictures of Gage, Rachel's cousin when we watched him the day before.

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Neuro Appt 
We did labs today. Rachel didn't like getting blood taken but she only fussed a little at the initial poke. When she was more sedated she used to not fuss at all so I'm probably one of the few moms who actually likes to see her child react to getting blood drawn or shots given.
If the results show that Rachel's Dilatin is way off that will change but as of now only her Keppra went up and everything else stayed the same. Her hips and ankles are a little stiffer so we're staying at the same place with her baclofen for now. We see him again in 4 months so it won't be too long until we reevaluate again.
We weighed Rachel and she's gained 3 lbs since we started the increased feedings!

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Rachel and Phonics 
Rachel know the sounds of letters! She continues to surprise us all the time with these things that she's picking up. In speech therapy her therapist would ask her what word starts with the "buh" sound and Rachel would look at Blue. Or I think that's how they did it...
We also might borrow a more supportive stander for awhile. Rachel's neurology appointment is tomorrow so I'll update again soon.

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Good therapy day 
In PT Rachel was able to lift her legs while in the walker. She didn't drag them either. If Bev tapped her leg Rachel would lift it forward. We have a neurology appointment this week and we'll probably ask if we can go down on her bacofen again.
Speech gave us more ideas for helping keep Rachel's mouth happy. Spritzing cool water and giving her small amounts of cold water and asking her to swallow. So that eventually she'll swallow on her own a lot better. I never knew how much work it was to swallow!

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Happy 4th and Crabby 5th 
Rachel had a great 4th of July, she was happy and smiling most of the day. She didn't do as much talking but she was much happier than she had been back when we thought she had an ear infection.
On the 5th though she was just crabby. She didn't want to really do anything... she crabbed at Kari. It was actually pretty funny because Kari would ask if she wanted to push the button to make the bubble blower work and Rachel would make crabby noises at her as if to say she didn't. I don't know if she didn't want to work that day or if she was tired out from all the activity on the fourth. But it was a complete opposite from how she was acting the day before. She wasn't in any kind of pain, just grumpy.

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And another week goes by... 
Wow, time is just flying by this summer! In therapy they are looking at ordering Rachel a new wheelchair. She's doubled her age and more than likely her length since we first ordered her stroller-like wheelchair. Luke's hoping this next one will be more sturdy, because even though the other one was $3,000, pieces were falling off of it all the time.
Rachel and Kaleigh both have colds... then we were thinking that maybe Rachel had an ear infection. The Dr. said if it's still bugging her tomorrow to bring her in.
We were in Duluth for my youngest sister's college graduation party and we got to see family and then Luke and I went out with a couple of friends. Rachel threw up a few times and it was either from the traveling or was because we were feeding her with a 60 cc syringe instead of her feeding pump. We still feed her slowly so we're not sure why the difference but she was fine once we were home again. Rachel has been the same weight for a year so each of her feedings is going up by 30 mL or the equivalent to one extra feeding a day. In one week she already gained two pounds so it will be nice to get a little more weight on her. I have to e-mail the nutritionist after a month of the increased feedings and keep her posted. We've been upped the amount for two weeks with no problems until we were in Duluth, and now she's back to doing just fine.

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Week update 
Now that I'm looking through Rachel's notebook I see I forgot to mention a couple of things that happened this week. Let's see, in speech therapy Rachel can turn the pages of a book, it takes her a while but she doesn't need help. She's also getting better at pushing with her legs when they're helping her play on the therapy ball.
Today we went to church and it was the grand opening of the new wheelchair lift. Well actually we used it last week when we went upstairs for Sunday school. It looks like a glass elevator so I make Luke go in it with Rachel and I carry the bags and the baby up the stairs. Then at home I weeded the flower garden and both the girls sat in their strollers outside. Luke was watering everything and ran cold water over Rachel's hand a few times. She'd smile and lift her arm up out of the way. She liked being outside so I hope we don't have such a hot summer this year so that she can get outside more. She's almost as pale as I am! ;)

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Since a bunch of photos were taken off the site when the server crashed here are some more:

Here's a pic from when my mom came up to help me with the kids while Luke was in the Boundary Waters. Hudson's trying to snitch cookie dough and Kaleigh's trying to climb onto the tray under Rachel's stroller.

Here's Rachel with the doll she picked out for her birthday. The bump on her tummy... in her tummy(?) is her baclofen pump. Not sure if it will be obvious to others but I thought I'd point it out.

Here's Rachel completely zonked after a busy birthday. She's really tall now! Oh she also has her hand splints on to help keep her thumbs out. Otherwise she squishes them in her fists all day and that's not very good for her hands.

And the image quality is bad but here's Kaleigh after finding sidewalk chalk under Hudson's bed.

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I talked to Kari and as the test went on the words got really hard. But considering she just turned 4 she still had an amazing score! She did the usual stuff in therapy on Wednesday. I don't think they did it yesterday but last week they put Rachel on the flat swing and then put a big stack of blocks behind her so she could knock them down. At first they had to tickle her to get her to push her legs to make the swing move but she loved making the blocks crash all over the floor so she kept getting better until she was pushing out with her legs more on her own.

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Busy. . . summer? 
Sorry I haven't been updating lately. Karina's started crawling and all the other things that pop up during the summer don't leave me a lot of time to sit down and add an entry. But today at work I updated some of the "static" pages on the side. Rachel finished her vocab test with a score of 94 so that's only a little below average for a 4 yr old. Since she just turned 4 it's still pretty impressive. I'm not sure how it was high as 5 yr old the other day and then at the end was lower, I haven't gotten a chance to ask Kari how that went yet.

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On Wednesday Rachel slept through most of speech therapy. That's what she used to do all the time. The second it was time for speech she'd be snoozing. PT probably wore her out, she did a great job with headcontrol practice and Bev's been working on stretching her out more these past few weeks. In OT they were working on getting her to push a button with her cheek but she wouldn't do it. She was still just getting up from her nap or she was just being stubborn.
Kari helped Rachel play with her Cabbage Patch baby. When Kari asked if the baby had a "stinky diaper" Rachel though it was hilarious.

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Monday Vocab Test 
In PT her therapist worked on her shoulders and hips. Both are a little tight. Rachel wasn't too happy about that but it's good they're getting worked out and that she's not so floppy anymore.
In Speech therapy she had a vocab test. For each question on the test there were four black and white drawings on a page and then Teresa (ST) would read a word and ask which picture it was. Then Rachel would either look at the picture or if she wasn't cooperating then Teresa would point to each picture and ask "Is this it?" and Rachel would blink twice to say yes to the right one. Rachel was crabby about it because she wanted to play but she went along with it anyway. You fail the test if you get 8 wrong in a row and through the entire test Rachel only got 5 wrong and she has the vocabulary of a 5 year old! She even knew what a porcupine was! She got fence and railing mixed up but even that's pretty good!

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