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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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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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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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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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