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Rachel's already feeling better. Either she just had a cold that aggravated her lungs while they were still clearing up or we caught it early enough. Either way she's pretty smiley.
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We went up to the ER in Hibbing. Not too many other people were there so for an ER it was relatively fast (4hrs) and everyone was really nice and friendly. Her primary pediatrician came in to see her and he agreed that we could take her home. The first Dr. wanted to admit her overnight but she's able to get much better care with nurses who know her cares. You don't see many people with trachs and g-tubes up here so medical staff are usually unfamiliar with them. A hospital isn't able to staff one-on-none care and we're able to have that at home. Rachel had IV antibiotics there and then we'll bring her back to the clinic to get a shot of the antibiotics again tomorrow. Then she'll have more oral (g-tube) antibiotics. But she didn't need any extra oxygen the entire time we were in the ER so she isn't even half as sick as last time.
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Rachel is just beginning to get sick again so we're going to run in and get her some antibiotics. Of course it's on a weekend again so we have to go to the ER. She's feels pretty good, smiley and not having to labor to breathe like last time. We caught it really really early so she should be just fine.
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Rachel had a good day in both therapy and school. In therapy they worked on the same things and next time she goes I'm going to send pictures with of the family, puppy, and some other of Rachel's everyday things. School went well they had the jungle theme again and for show and tell Rachel brought my tree frog keychain. His mouth shines a small bright red light when you open it. It sounds as if the kids and Rachel liked it. Rachel got sleepy after playing on the ball again so she was pretty sleepy for painting a lion and drawing spots on a leopard(?). Then Midwest Medical came and adjusted her stroller and stander. She's really growing fast!
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Rachel's future cousin Gage is officially due! Rachel had a good day, very talkative and making happy sounds, not complaining ones.
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Rachel was pretty sleepy for therapy today. In speech therapy they practiced swallowing and doing rib stretches so Rachel can take deeper breaths. In PT she had Carol and she stretched Rachel out.
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Today I cheated on being creative and used Rachel's teacher's account of how the day went at school today. Thanks for the e-mail Dina!
Rachel seemed much more alert today and required less suctioning than last week. She was smiling when she arrived and then Kari read her the book that I knew the speech path would use during her language group. Her switch was all set up for her to respond regarding various animals and sounds found in the jungle. Then, Dawn came in to do OT. Although her PT was out sick, Kari did a great job at getting her involved and moving around. They moved her to the floor for the big ball activity and again, big smiles when she heard the echo as she hit it on the sides with help. We finished up by creating a lion out of circles...not as messy as Rachel would have liked, but still fun.
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Our neighbors and Luke's mom and step-dad were over for dinner and game night on Tuesday. Rachel (and Kari) helped me measure ingredients to make bread for dinner. Then Rachel eventually fell asleep in her chair for an hour or so. We brought her upstairs to get her dinner but then she woke up. So after her feeding was done I brought her back down and put her in her chair next to the table so she could watch all the action. She would pipe in when we were talking about things and was very smiley when we were laughing. She was still up when Linda got there! (9 pm) Because she was such a little party girl she was a little sleepy for therapy on Wednesday but she still did a good job.
I'm not sure if I've explained it much here but Rachel creates her own sleeping schedule. If she wants to sleep and she's good and asleep there is pretty much nothing you can do to wake her up and keep her up. Same thing with falling asleep. You can darken her room and turn off distractions but it doesn't really make a difference and then you feel guilty that she's just laying awake in a dark room.
Anyway, so at therapy she did great- they worked on mouth stimulation (to help her to swallow and to prevent excess drooling) and breathing exercises (to try to lead Rachel to inhale and exhale at the same time the PCA, therapist, or one of us does) and in OT they were working on getting her arms to turn in more, she holds them out so much that her muscles are tight that way. We also want her to push a button that is more towards her lap instead of just the easy one above her shoulder.
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Bev, (PT) was very happy with how Rachel did today even though Rachel had been sick for a couple of weeks. They worked on head control and knocking stuff over. In Speech, Teresa showed Kari mouth stim exercises. Another thing they do is hold up two toys and ask Rachel to look at one. If she looks at it, then she gets to play with it as a reward for identifying it. Then when I got home Hudson and I went around the house and took pictures of things to put on her communication board. Hopefully we can use these pictures to ask what she wants to do or to identify people. So we took pictures of the bath, her tv, her stander, her favorite book, the puppy, and each member of the family.
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Today I went with Kari to Rachel's school. It had been about a month since the last time Rachel was there so she got tired out by all the activity. Before the break she was able to stay awake and would hardly need any suctioning.
While the other kids were eating Kari read Rachel a story, then when the other kids were finished, some of them gathered around Rachel to hear her story. Then circle time starts the day. Speech therapy read a story. Rachel has a button that her teacher prerecords phrases so that when Kari helps her push the button, Rachel gets to chime in when a teacher or therapist is asking the kids a question during circle time. After all the songs and dancing (Kari and one of the therapy assistants help her out with that.) OT put the therapy ball on top of her and helped her to hit it and hear the echoy ball noise. She thought that was great. After all that she was zonked. It was pretty cute trying to get her to paint a penguin while she was asleep. Then we had to get her jacket on and meet the van outside that picked us up and brought her home.
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Rachel had a great therapy day today. She had a 45 minute nap before they left for therapy and her speech therapist thought she did so well that we should try to do that every therapy day. In OT Rachel had fun riding the peanut ball with Germaine as if it was a pony. She was able to do that for 15 minutes! Kari (new PCA), Hudson, and I had a blast playing with Rachel's talking button and the button that's hooked up to her bubble machine. Rachel pushed the button and blasted Hudson with hundreds of bubbles!
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I've been so tied up with Rachel being sick I forgot all about therapy! Rachel did go to speech therapy on Monday and she did very well. Still working on getting her to look at pictures. (Her therapist holds up two pictures and asks her to look at one of them.) She does good when the pictures are held vertically, one on top of the other, but side to side she doesn't do as well. We're also still working on getting her to swallow better, this time by putting a cold Q-tip on her lip to see if that stimulates a swallow. Rachel is feeling great, she's smiley and doesn't need tylenol or any of her extra meds or oxygen.
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Rachel kicked this really fast. She doesn't need extra oxygen and she's getting a lot of her strength back. Thanks for praying for her!
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Rachel's feeling much better now. We're watching movies in the living room this afternoon. Rachel has her speaking valve on and is making up for the last week of having to be quiet. (We didn't put the valve on while she was sick.) She's been chattering non-stop since we put it on!
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