"Why doesn't she (Ali) have a wheelchair?" asked Kyleigh this morning during journal writing time.
This of course led to a discussion about what caused her disability. As a follow-up she said, "I feel mad at at the doctors."
Then she went on to tell me about a friend at school who also uses a wheelchair. "My girl friend wears mittens everyday. I feel disappointed."
I'm not sure what these mittens are she is talking about...maybe some kind of therapy glove or perhaps even a cast because of surgery. She said that her fingers stick out of the mittens, but she was concerned that she has to wear them all the time.
I never thought this journal writing would bring up such thought provoking conversation.
Thursday, June 2, 2011
Wednesday, June 1, 2011
In response to her teacher's email
Her 2nd grade teacher wrote her an email telling about a trip she went on. Her teacher also asked what book she is going to read next and what she is looking forward to at camp next week. This is how she responded.
2nd Summer Entry: 6-1-11
I have ridden a horse to. I was scared to fall to. I was proud of myself for riding. I will read Amelia Bedelia. At camp I want to swim.
2nd Summer Entry: 6-1-11
I have ridden a horse to. I was scared to fall to. I was proud of myself for riding. I will read Amelia Bedelia. At camp I want to swim.
Kyleigh takes over
In an effort to offer Kyleigh a chance to share her thoughts with the world, I let her take over my blog spot that I started for a class I was in last year. All of the blogs hereafter will be transcribed exactly from Kyleigh's communication device, the Eco14, as she writes them.
I asked her: What do you want to tell people? (Backstory: We just finished our basement to make a living space for Kyleigh that is completely accessible to her and she is thrilled with it.)
Summer entry 1: May 31, 2011
I have an elevator. It goes down and up. I love it.
I asked her: What do you want to tell people? (Backstory: We just finished our basement to make a living space for Kyleigh that is completely accessible to her and she is thrilled with it.)
Summer entry 1: May 31, 2011
I have an elevator. It goes down and up. I love it.
Saturday, November 20, 2010
What a Week
Have I mentioned lately how glad I am to have my new job. Its flexibility this week is paying off in dividends.
So Monday all was well. Tuesday, Ky had two appointments. She had to go to a dental specialist at 7AM in downtown Atlanta which means we had to leave at 5:30. Ick! We arrived and our name was not on the list of patients to be seen. After the trouble we had to go through to get this appointment, I knew they were going to send us back home. They typically see patients with cleft palette, jaw problems, etc. I had to beg and plead to get Kyleigh seen. Well, fortunately our early morning paid off and they did see us. They want her two teeth that are next to her two front teeth to grow in before they do anything else. Then, they said they would try to put in a semi-permanent bridge. Sadly, none of this is going to do anything to prevent bone loss so eventually she's going to need a bone graft to replace the bone that she loses in her upper jaw. Then, they will be able to do implants when she is 18 years old or so. This whole dental thing is going to be a big issue for years to come.
So, after the dentists we had a 9AM neurologist appointment. We didn't arrive until 9:30 because the dentist was late seeing us. However, we waited for the neurologist until 11:15 so I guess the being late just meant we didn't have to wait so long. He has determined that her dystonia is actually more prevalent than her spasticity. This means that her primary diagnosis is no longer CP, but actually dystonia. He is treating her with medications in the Parkinson family. If we see enough improvement, then we will consider deep brain stimulation. Currently she is taking 12 mg of Artane a day. Our instructions are to titrate her up until she is taking 50 mg of Artane a day. This is a huge amount for anyone with normal muscle movement, but for her, hopefully, it will help to control her abnormal movements. More medication issues: her carbadopa/levadopa combination med that she has been taking is being discontinued. This normally isn't a big deal because she's just taking a generic version. However, she's allergic to the non-generic version because it has yellow dye in it. The generic version has blue dye which she's not allergic too so we've been hunting a pharmacist that can make this for us.
Anyhow, after all this nonsense on Tuesday and Kyleigh arrives at school 2 hours before it gets out but I had to drop her off because I had an appointment that afternoon. Wednesday, she was up all night coughing and gagging from sinus drainage and so we kept her home because we knew she would be too tired to work. Aaron stayed home with her this day because I had previously scheduled appointments. Then, Thursday she said she was ready to go back to school although we knew she was still feeling badly. Unfortunately, she had been to the clinic twice before 9AM and they called me. So I went and picked her up, took her to the pediatrician and found that she has a sinus infection (no surprise) and lymphadenopathy. Her lymph nodes actually got infected themselves from working overtime to fight the infection. She wasn't eating because her glands were swollen to the size of summer grapes. It's pitiful. Needless to say, we kept her home on Friday too and she's still pretty miserable despite the added four medications to her usual four that she takes three times a day. Uck!
Christine K.
So Monday all was well. Tuesday, Ky had two appointments. She had to go to a dental specialist at 7AM in downtown Atlanta which means we had to leave at 5:30. Ick! We arrived and our name was not on the list of patients to be seen. After the trouble we had to go through to get this appointment, I knew they were going to send us back home. They typically see patients with cleft palette, jaw problems, etc. I had to beg and plead to get Kyleigh seen. Well, fortunately our early morning paid off and they did see us. They want her two teeth that are next to her two front teeth to grow in before they do anything else. Then, they said they would try to put in a semi-permanent bridge. Sadly, none of this is going to do anything to prevent bone loss so eventually she's going to need a bone graft to replace the bone that she loses in her upper jaw. Then, they will be able to do implants when she is 18 years old or so. This whole dental thing is going to be a big issue for years to come.
So, after the dentists we had a 9AM neurologist appointment. We didn't arrive until 9:30 because the dentist was late seeing us. However, we waited for the neurologist until 11:15 so I guess the being late just meant we didn't have to wait so long. He has determined that her dystonia is actually more prevalent than her spasticity. This means that her primary diagnosis is no longer CP, but actually dystonia. He is treating her with medications in the Parkinson family. If we see enough improvement, then we will consider deep brain stimulation. Currently she is taking 12 mg of Artane a day. Our instructions are to titrate her up until she is taking 50 mg of Artane a day. This is a huge amount for anyone with normal muscle movement, but for her, hopefully, it will help to control her abnormal movements. More medication issues: her carbadopa/levadopa combination med that she has been taking is being discontinued. This normally isn't a big deal because she's just taking a generic version. However, she's allergic to the non-generic version because it has yellow dye in it. The generic version has blue dye which she's not allergic too so we've been hunting a pharmacist that can make this for us.
Anyhow, after all this nonsense on Tuesday and Kyleigh arrives at school 2 hours before it gets out but I had to drop her off because I had an appointment that afternoon. Wednesday, she was up all night coughing and gagging from sinus drainage and so we kept her home because we knew she would be too tired to work. Aaron stayed home with her this day because I had previously scheduled appointments. Then, Thursday she said she was ready to go back to school although we knew she was still feeling badly. Unfortunately, she had been to the clinic twice before 9AM and they called me. So I went and picked her up, took her to the pediatrician and found that she has a sinus infection (no surprise) and lymphadenopathy. Her lymph nodes actually got infected themselves from working overtime to fight the infection. She wasn't eating because her glands were swollen to the size of summer grapes. It's pitiful. Needless to say, we kept her home on Friday too and she's still pretty miserable despite the added four medications to her usual four that she takes three times a day. Uck!
Christine K.
Sunday, November 7, 2010
MCATDT
What a wonderful weekend. I got the pleasure of spending some time with my mom. I saw some old friends at Homecoming and I played the trumpet at a Florida State football game. The only thing that could have made the weekend better would have been if FSU had won. Oh well. I am hopeful that they are improving and that hopefully next year will be better still.
It is a lot more tiring to do a 12 hour day at my age than it was when I was 20. However, it was amazing that it was not only possible, but exhilarating. I look forward to being able to go again next year and possibly taking Alison with me. By then, she will have been in band for over a year and maybe she'll be inspired by seeing the best band in the country.
Christine K.
It is a lot more tiring to do a 12 hour day at my age than it was when I was 20. However, it was amazing that it was not only possible, but exhilarating. I look forward to being able to go again next year and possibly taking Alison with me. By then, she will have been in band for over a year and maybe she'll be inspired by seeing the best band in the country.
Christine K.
Sunday, October 31, 2010
Festivities
It has been a busy couple of days. Juliet Gordon Lowe (founder of Girl Scouts) had a birthday yesterday so our Girl Scout service unit had a birthday party for her. It consisted of all different sorts of fun. My favorite was the donut on a rope. The girls have to put their hand behind their back and then try to get the donut off the rope that's dangling in front of them. It is hilarious. They bobbed for apples and did Cindy Loo Hoo hair. They made goo and participated in costume contests (Kyleigh won 3rd prize for the Brownies) and made gross goodies (Alison won 1st place for the cadettes). A good time was had by all.
Then, we went to Hebron's fall festival. Alison jumped until her heart was content and Kyleigh played ring toss, bean bag throw, and various other carnival games. We had free hot dogs, popcorn and drinks which was nice and we got to spend some time with Papa.
Finally, tonight we went trick or treating. The girls had a wonderful time. I can't believe what a difference it is with Kyleigh and her chair. Last year at this time, Kyleigh drove her chair on her own to about 4 or 5 houses before she was done. Tonight, she drove the entire way. She was tiring out at the end, but she did so well. Alison was better behaved because she didn't have to spend her whole night waiting on Kyleigh so that was nice. Everyone commented on their costumes. Alison was a stingray and her costume was hand made by dad. It was amazing. Kyleigh was boo mama.
This week, the girls only have a four day school week because of the election on Tuesday when they will miss school.
I will be traveling to Maryland with my job for a few days to see another consultant at work.
All seems to be going fairly well.
Christine K.
Then, we went to Hebron's fall festival. Alison jumped until her heart was content and Kyleigh played ring toss, bean bag throw, and various other carnival games. We had free hot dogs, popcorn and drinks which was nice and we got to spend some time with Papa.
Finally, tonight we went trick or treating. The girls had a wonderful time. I can't believe what a difference it is with Kyleigh and her chair. Last year at this time, Kyleigh drove her chair on her own to about 4 or 5 houses before she was done. Tonight, she drove the entire way. She was tiring out at the end, but she did so well. Alison was better behaved because she didn't have to spend her whole night waiting on Kyleigh so that was nice. Everyone commented on their costumes. Alison was a stingray and her costume was hand made by dad. It was amazing. Kyleigh was boo mama.
This week, the girls only have a four day school week because of the election on Tuesday when they will miss school.
I will be traveling to Maryland with my job for a few days to see another consultant at work.
All seems to be going fairly well.
Christine K.
Friday, October 15, 2010
End of 1st nine weeks
In our house, we have all As, Bs and only one C...and the C improved from a U at midterms. We are so proud of our smart girls. Alison is in all advanced classes and Kyleigh is in regular 2nd grade and expected to do the same work as everyone else. Just a proud mommy...had to share.
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