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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Wow, I'm getting really bad at updating. Sorry! On Tuesday Luke and I ran down to Duluth for the day to pick up Hudson and go back to school shopping. Hudson and Rachel are all outfitted for school except for new shoes. Rachel may go to school three times a week. Well, it would be Monday, Thursday, and every other Friday. Then we'd do only one speech therapy a week until we get her computer and then maybe we'll go back to doing more. I haven't talked to the other therapists yet to see if we'd do therapy on Tuesdays and Wednesdays or if Rachel would only go on Wednesdays during the school year. Kari does such a consistent job of practicing the communication board that Rachel will probably do fine with only one day of speech therapy. Once we start working with the new computer (the one that talks for her) we'll have to go back more to get everything set up and to learn how to use it. A lot of each of the therapies is gearing up towards getting this computer. OT works on finding the best way to get Rachel to push a button. PT works on quite a few things but they also practice getting Rachel hold up her head and turning it while sitting her her chair. She already is holding it up and at midline much better than a couple of years ago.
Last Wednesday they looked at equipment that would help hold up Rachel's head while she's in the Bronco walker. Most of the time the therapist helps with her legs and then an assistant or the PCA has to hold up her head.
On Wednesday she also got her baclofen pump refilled and we didn't decrease at all. There was a little bit of tone last time we saw Kanoff so he didn't want to go down again yet. I checked this time and Rachel's only at 40.5 micro teeny tiny L.
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Today Luke and I packed up the kiddos and went to Dairy Queen. I gave Rachel a bite of ice cream but she usually hates it so I didn't give her more. Then when we got home she started complaining. I was feeding Kaleigh some apricot and mixed fruit baby food so I asked Rachel if she'd like to try some. She very deliberately blinked twice for "yes". She did great swallowing so I'm going to ask her speech therapist if she thinks we could start giving her some food by mouth again. I used to feed her a jar of baby food a day. Then St. Mary's did a swallow study and found that she wasn't aspirating her food but she was at risk to so her Dr. told me I should probably stop feeding her. If she breathed food into her lungs it could cause a pretty icky pneumonia. But she's had a lot of swallowing practice since then and she also has her Passy Muir valve so hopefully we'll be able to feed her by mouth again if she enjoys it.
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Our internet is REALLY slow at home and I don't have a lot of time to update at work. Luke and I were in Chicago this weekend and had a great time at his cousin's wedding. Thanks to my parents for watching Kaleigh and Rachel and to Kari for working long days to help my parents out with Rachel. Beth and Tom watched Hudson and he's having a blast playing with Katie and Carson. So Luke and I were on our first vacation in at least four or five years if not longer...
Rachel is acting as if she's not getting enough of one of her seizure meds for the last week. We called the pharmacy and they're going to try mixing up a new bottle.
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Today we made a really quick trip to Duluth to see her gastroenterologist. We also got Kaleigh's 1 yr old portraits taken. While I was doing pictures, Luke was walking around with Rachel in the mall and ran into Rachel's former nurse Mary and her sister. Of course Rachel wouldn't show off her talking skills for Mary but when Luke went into Barnes and Noble and asked Rachel to be quiet she got a big smile on her face and started talking really LOUD. Then Luke would say, "No, no Rachel, we have to be quiet now." And then she'd smile and get even LOUDER!! Stinker.
So it was a really quick trip to Duluth but the weather was great and it was fun to see the view of the lake and all the tourists from the new Pediatric center. I love that we can have an appointment at 6:45 pm when no one else is there. We just park right across the street from the front door, walk right in, get checked in quick and see the doctor right away. I love it! The Dr. wanted to wait to do anything drastic about her refluxing until spring to see how she does this winter. If she doesn't have too many problems with aspiration we'll just leave things as they are. When we have to get her teeth cleaned then we'll also have him check out her esophagus since she'll have to be put under general anesthesia to have her teeth cleaned anyway.
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Yesterday the city was working on the water pipes by our house. This caused our water to sputter forcefully from the air in the pipes or look a nice murcky yellow.
At one point I thought that it was fine for the night because all the yellow was gone and then it sputtered out and was completely gone. Sigh. I called Linda on her way to our house and warned her and she stopped by the grocery store so we'd have fresh water for Rachel. That was nice. We have sterile water for Rachel but it's much to expensive to be giving to her to "drink" or flush her meds/feedings through her tube. It's funny how you take clean water for granted, so I reminded myself of all the people who don't have indoor plumbing and treated it as an adventure.
Hudson wanted a glass of water and when I told him to have 7-up instead he must have thought I'd gone bonkers. (But he didn't ask twice, he must have figured he won some sort of lottery and squirreled off with it before I could change my mind.)
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Rachel was being silly in speech therapy yesterday. Remember a month or so back when Rachel was able to make up stories and they were usually about princesses? It's a story book that's set up like Mad Libs, she picks from pictures how the story will go. Well today in her story we lived in an RV, had a pet bat, and a magical potty. She thought it was soooo funny. She's also doing a good job with turning her head. They have scents for her to smell and that helps her to turn right away.
Happy Birthday Kaleigh!!!
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Hi All!
As many of you know Corbin is Rachel's boyfriend from when they were both in inpatient therapy together down in Duluth. Miller Dwan had some experience with pediatric cases but they hadn't had kids as young as ours for a very long time. (Rachel had just turned two and Corbin was almost a year and a half.) So you can imagine what the chances were for both of us to be there at the exact same time! I feel we were definately brought together for a reason.
So if you could, Caradie has gone through the process of submitting an application through the ABC Extreme Home Makeover website but if you would check out her petition here, that would be great. They have three boys in one little house and the whole family has sacrificed so much to help out the Corbmeister, so please check it out!
Thanks!
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I keep trying to come up with something to write about but not that much new is going on. Rachel is continuing to do well in therapy. She's turning her head well. One of her speech therapy goals was met. Her therapist wanted Rachel to be able to expand her upper ribs while breathing in. She used to take breaths that were much shallower.
I was cuddling with Rachel the other day and she would mimic the syllables of what I was saying. When Connie left at the end of the day Rachel right away started calling out. It was as if she was saying, "Hey mom! I'm all alone in here! I'm bored! Get in here already!"
Kaleigh's had a fever for the last couple of days so we've been busier with her as well. The summer is almost over so we're quick trying to fit in the few last activities before fall and school creep up on us!
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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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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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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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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 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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