Rachel stayed awake for her entire school session! She was all smiles when she arrived, and as the other children greeted her. Kari had about 5 children around her and Rachel as she read them a story. Our circle time group focused on the upcoming Valentine holiday. Her speech/pathologist had her "switch" all set up, so that she could respond with the other children. One child commented to me that "Rachel knows all the answers!" Her speech/language group worked on "position/spatial" concepts...in front of/on/in/behind, etc, and Valentine vocabulary. Next, was OT. Dawn, her COTA, was out at a conference, so it was up to me. I think I must be much louder than her other teachers, because she didn't fall asleep. There is a dance portion during one of the songs, so we improvised and when the other children danced, she got to shake/bang a tambourine. She really liked that part. We placed her on the floor with the other kids for the ball portion, and again she liked the big ! sounds when she slapped it. Then she stretched out on her back over the ball. Big smiles and verbalizations. [Rachel has pictures of all of us that we show her and ask her to identify.] I asked her "Where's Mama, Where's Dada, Where's Kaleigh?" Nothing. When I asked, "Where's Hudson?" Big growls and grunts, talk, talk, talk. Kept happening each time I got to Hudson. We finished with Rachel making a surprise, that you won't get to see until the 15th.
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We had a really busy day on Thursday. Rachel went to school in the morning and we had everything ready to go and everyone in the van waiting so that when Rachel got dropped off we just put her in her seat, the stroller in the back, and drove off to Duluth. I didn't get the chance to ask Kari how school went. Then we did some errands up at the mall including getting pictures of Karina taken at Sears and Hudson and I picking out yarn for sweaters that my mom is going to make us. Then my grandparents stopped by my parents' house to see the kids. That evening we had a doctor's appointment with the pediatric gastroenterologist from the Cities at the new Pediatric building for St. Mary's. I hope with the new building they can attract some more specialized pediatricians. Our appointment was at quarter to 7pm so there was no one else in the building except one receptionist and a cleaning person. It was great. We were able to park right across the street from the front door and were in and out in a half hour. Another thing I appreciated was the divided waiting area, half was for sick kids and the other half for well kids. I don't need to give Rachel a chance of catching anything.
The Dr. said everything looked great. (He always says that.) He said her reflux would be of concern if she keeps having a lot of pneumonias or having formula come out of her trach and we could do more tests. We're also looking at looking at her esophagus to make sure it's not getting worn down when she'll be asleep to get her teeth cleaned. Since Rachel will not open her mouth voluntarily we'll have to have her sleeping in order for her teeth to be cleaned. We have an consulation with the dentist at the end of this month so we'll have to ask if he'd be willing to coordinate something with the gastroenterologist. After the appointment, Hudson and Luke had dinner at my parents (they had been out bumming around town most of the day) and we didn't get home until 10! Rachel will be probably pretty tired today. Whew!
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Usually to help make it easier for Rachel to push the button we put it above her shoulder. Now OT is having her work on having Rachel keep her arms down and setting the button on her lap or a tray in front of her and having her push it there. It's really hard for Rachel to do this because her natural tendency is to want to bring her arms up but she did a great job and pushed the button 5X while it was on her lap. If Rachel tried to pull her arms up Germaine would remind her it was the wrong way and Rachel would bring her arm down and push the button!
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Rachel did go to therapy today, Luke wrapped her up in an extra blanket to shield her from the cold so she never even shivered. She had good head control in PT but she was pretty sleepy for both speech and PT.
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Rachel has a new cousin! Gage was born at 4:45 this morning. He's 8 lbs 3 oz and 21 inches long. Congratulations Erin and Greg!
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Not a lot to update on because we've kept Rachel home from therapy and school. We were going to send her to school but she probably got the cold from some of the other kids in the first place so we'll keep her home until she's fully recovered.
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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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