It's Rachel's 4th Birthday today!! [ 1 comment ] ( 2 views ) | permalink | related link
Lately Rachel seems to be trying to copy what we say. Luke was copying her noises and Rachel was mimicking him right back. Then Kari noticed the same thing, when Kari would talk to her Rachel would try to make similar sounds/syllables back. Then Luke was teasing Rachel about something cute and Rachel angrily made her "Da da da" noises. I think she was scolding him.
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The server that hosted Rachel's site crashed over the weekend. Thankfully I still have the nurses's communication books to have a record of Rachel's accomplishments at school and therapy since Kari had such good notes on how each day went. Dina's e-mails from school had a lot of good information as well and I didn't delete those so thankfully I didn't lose all record of the couple months lost. If anyone has anything more recent than Feb 20 printed out at home please let me know. After Rachel's accident regular Baby books (the ones where you record first steps and stuff like that) didn't apply and I'd been relying on this as a sort of scrapbook instead.
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Whew it's been a while. Therapy has gone well, she's been sleepy lately.
Speech therapy has been working more on her communication board and getting us to use it more often. Having her choose between 4 activities. And asking her to look at the "all done" picture when she wants to quit. School went well, we dressed Rachel in pink sparkle pants, a kitten valentine's shirt and a pink zip up hoodie (that matched the hoodie Kari was wearing).
Since people have mentioned how much they like hearing from Rachel's teacher, here's some of last week's e-mail:
Rachel was dressed so cute for our Valentine's Day party. Kari and her arrived right on time and settled in with the other children. Kari read to Rachel and some others for a short time before Morning Circle. We opened with our "Welcome Song," and practiced each others' names. Next, our speech pathologist came in for group. She read a Valentine's story, reviewed vocabulary and concepts. Rachel's PT helped her during her OT group activities. They were really working her hard. She always seems to enjoy getting down on the carpet with the other children the most. After OT, she decorated her "Valentine Keeper" with pretty hearts and stickers. She was starting to fade at this point. The kids really liked her "Hello Kitty" valentine pouches, and everyone had a great time.
Kari said they had a tablecloth full of paper hearts that the kids sat around and shook the cloth and so they'd go up into the air and fall down around Rachel. She really liked that activity.
Last night Rachel took a late evening nap and then was up until 12:30 am and so today she's very vocal and crabby.
Sorry for fragmented sentences and bad grammar I'm super tired and I figured I better hurry and post something before I get too behind.
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Yesterday Kari and Rachel made valentines for Valentine's day at school (tomorrow). I bought little Hello Kitty bags and Kari helped Rachel put treats in each one. Rachel was happy that morning but kind of whiny later in the day. It sounded as if she had a toy flute upstairs that she was playing with.
One of her therapists was sick on Monday so we kept her home from therapy since she seemed a little extra gunky on Sunday. Rachel seemed kind of mad with us that she wasn't out playing but she seems to have gotten over her cold or the tail end of her pneumonia.
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Again, a BIG thanks to Rachel's teacher for e-mailing how the day goes at school!
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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