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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Rachel's feeling better, she even tolerated her stander for an hour today. We watched a bunch of old videos and we had Rachel watch movies of when she was a baby. Some of them I didn't remember as well so it was really fun. Even the first therapy videos we did were almost a year ago. She was a lot pudgier and littler then, she really is starting to look more and more like such a big girl!
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Rachel is a little better today, she's smiley and needs a little help from the oxygen. Hopefully she'll be strong enough next week to go back to therapy and school.
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We just got back from the Dr. and he said that we should expect that it will take her a while to get over this. Normally people who get pneumonia will have a cough for weeks. Then it will start to look a little worse when all the gunk in her lungs finally breaks up and she's able to cough it out. It takes quite a while for the lungs to heal. So that's good to know that this is somewhat expected and we shouldn't be surprised that she still needs some supplemental oxygen.
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Please keep praying, because she hasn't kicked this yet. We're going to go see her Dr. and maybe get more x-rays of her lungs. She's still on a little oxygen and she's had about 4 days of antibiotics. Luke's on his own today so I might go home early from work and we'll take her to the doctor. It's only 9 am now so we'll see if anyone can come in.
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Rachel is still pretty sick. She had a really good nap from 5pm until whenever she woke up... sometime after 9pm when the nurse got here. But then she needed a lot of suctioning and a little help from the oxygen again. At 1 am her nurse gave her a nebulizer treatment. When I got up she was trying to get in a vest treatment in between all of her suctioning.
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Rachel needed a lot of suctioning today but she seems to be doing much better. She's sleeping now and I turned off the extra oxygen and she's still doing okay. Hopefully she'll have a good night.
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Rachel had an okay night. I put just a little oxygen on her to help her out a little bit and a nebulizer treatment at 3 am. Her nurse gave her extra vest treatments and her lungs sounded a little clearer a couple of times. It's so nice to be home and have some one taking care of her that knows her. It's also great to have a home care company that's very familiar with all of this respiratory equipment and treatments. Please keep praying for her to be well soon, she looks better than before but she's still pretty sick. Thanks!
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Rachel seems very happy to home. We have more oxygen tanks and a nebulizer. As back-up for the O2 tanks we have an oxygen concentrator that filters out everything but oxygen out of the air. We won't normally need them but it's nice to have them tonight since her lungs haven't cleared up all the way yet. I'm exhausted
but I just wanted everyone to know that we're home, she's still sick but she's looking better.[ add comment ] | permalink | related link
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