I’ve been handling some more sensitive stuff recently for Caitlin, and it’s been extremely stressful. Even when you are in the right, the system is set up to save money, not to necessarily help people. Luckily, I have the support of RAMP for this headache. As most of you remember from Caitlin’s fundraising Grand Marshall gig a few weeks ago, RAMP is an advocacy agency for people with disabilities. They have been a lifesaver. It seems that I have finally stood my ground, and Caitlin will get what she needs to thrive. I just wish that people didn’t actively work against families like mine when we have so many normal difficulties to conquer each day.
Otherwise, Caitlin has been doing well. She is weaned off of Topamax and is on only one anti-epileptic for the first time since she was 3 months old. Unfortunately, it’s the expensive Vigabatrin that is approved everywhere else the world except the US. Everything seems to be working, though, with the current Vigabtrin/Ketogenic Diet/no-nap combination. During the summer, Caitlin was up to two strong spasms a day that lasted up to seven minutes each with the occasional blockbuster that went over 10 minutes until Diastat was administered. As of today, Caitlin has been seizure free since October 26. We’ll take it.
This has made her much more aware and with it. Caitlin had an awesome day at school doing very well with her vision therapy and physical therapy. She really is starting to stand for longer periods of time with minimal assistance. We’re so proud of her.
Things seem to also be going well with her and her little boyfriend. He and his mother have been arriving at school at the same time as us. The last two mornings he has insisted on holding her hand as I wheel her into class. This makes for a happy Caitlin. There is nothing quite like five-year-old love.
Last night I had my City of DeKalb Advisory Commission on Disabilities meeting. It went very well. We have finally started the process of networking with the similar committees at Northern Illinois University. It was great to share information and plant the seeds for future projects. The town/gown divide is ridiculous. This way we will combine our resources and ideas to hopefully make the community as a whole better for all of the people with disabilities. The only downside is that I think that I increased my workload again. Just call me Ado Annie....
Showing posts with label special children. Show all posts
Showing posts with label special children. Show all posts
Wednesday, November 14, 2007
Friday, November 9, 2007
I Drink a Lot of Coffee
There are reasons that I drink gallons of coffee. The last couple of days have been frickin’ exhausting. Wednesday was a doctor day for Caitlin. As most of you know, we live out in the cornfields of DeKalb. Since Caitlin has many rare medical problems and we want to get her the best care, all of her doctors are at Children’s Memorial Hospital in Chicago. This means that her regular appointments with her five doctors are all-day undertakings.
We left the house at 8 a.m. and ventured through traffic and construction to the Lincoln Park neighborhood. Traffic was reasonable so we were there exactly in time for our 10:15 a.m. appointment. Mapquest says that this is 1 hour and 15 minutes trip. Mapquest lies.
By the time we got there, my eyeballs were floating from all of the coffee. It wasn’t pleasant. We were in theory seeing Caitlin’s Rehabilitative Specialist and Orthopedist. We checked in and discovered that someone had messed up her scheduling and put one of the appointments on next Tuesday. Luckily, this was fixed immediately. Caitlin then got her hip x-rays. That was fine, and we started waiting. It was at that point that Caitlin started to cry from something. After about 15 minutes I soothed her. By 11:30 we were finally called in for the first doctor.
The appointment went well. The Rehabilitative Specialist was impressed by Caitlin’s physical gains with sitting and standing. There was also this exchange:
DOCTOR: Caitlin, can you use your words and talk to me?
CAITLIN: No.
DOCTOR LAUGHS
DOCTOR: I see that your daughter has discovered irony.
That’s my girl.
That appointment was over at about 12:05. Then we waited. And we waited. My hopes of getting out of there by a reasonable time quickly evaporated. By 1:30, I was flagging down nurses to find the doctor. I also had to start Caitlin’s tube feeding since she was supposed to start at noon. By 2 p.m., he sent a resident in to ask some questions for no particular reason. By 2:15, he swept into the exam room, apologized, poked Caitlin, told me that her scoliosis and hips were about the same, and swept out again three minutes later.
By three I finally ate lunch in a Burger King parking lot, and then we were back on the road. We got home, ate dinner, and then the whole family went to the public library’s SF reading club so that we could deconstruct I Am Legend.
The next day was about as hectic. I woke up, did some writing, got Caitlin to school, handled some business with the school district, talked to Lars about the MNP project, did some emailing for the City of DeKalb Disabilities Commission, picked up Caitlin, and then headed off to chair a LINC meeting.
The meeting went fine. We finally came to a decision about how to spend some funds left to us after a tragic accident. A teen mother and her child with disabilities died in a car accident a couple of years ago. Our organization received the memorial fund. We are working with a continuing education program for teen parents that is going to use our funds to buy some teen parent advocacy supplies.
We also continued to work with Easter Seals to try and get a satellite office placed in our community. Currently, people have to drive 45 minutes to get center-based pediatric therapies at Easter Seals. There used to be a center here, but it closed a couple of years ago due to staffing problems. I have been agitating for a while to get them to reopen as our community has a great need. We are finally making some progress. After the LINC meeting, I was asked to serve on the exploratory committee by the Easter Seals representative. Being me, I was unable to say no.
I also agreed to rewrite the LINC bylaws this month because I have sucker written on my face. Caitlin and I then got home and worked with her Physical Therapist.
Today is just watching Caitlin, some speech therapy, and packing for Windycon.
Did I mention that I drink a lot of coffee?
We left the house at 8 a.m. and ventured through traffic and construction to the Lincoln Park neighborhood. Traffic was reasonable so we were there exactly in time for our 10:15 a.m. appointment. Mapquest says that this is 1 hour and 15 minutes trip. Mapquest lies.
By the time we got there, my eyeballs were floating from all of the coffee. It wasn’t pleasant. We were in theory seeing Caitlin’s Rehabilitative Specialist and Orthopedist. We checked in and discovered that someone had messed up her scheduling and put one of the appointments on next Tuesday. Luckily, this was fixed immediately. Caitlin then got her hip x-rays. That was fine, and we started waiting. It was at that point that Caitlin started to cry from something. After about 15 minutes I soothed her. By 11:30 we were finally called in for the first doctor.
The appointment went well. The Rehabilitative Specialist was impressed by Caitlin’s physical gains with sitting and standing. There was also this exchange:
DOCTOR: Caitlin, can you use your words and talk to me?
CAITLIN: No.
DOCTOR LAUGHS
DOCTOR: I see that your daughter has discovered irony.
That’s my girl.
That appointment was over at about 12:05. Then we waited. And we waited. My hopes of getting out of there by a reasonable time quickly evaporated. By 1:30, I was flagging down nurses to find the doctor. I also had to start Caitlin’s tube feeding since she was supposed to start at noon. By 2 p.m., he sent a resident in to ask some questions for no particular reason. By 2:15, he swept into the exam room, apologized, poked Caitlin, told me that her scoliosis and hips were about the same, and swept out again three minutes later.
By three I finally ate lunch in a Burger King parking lot, and then we were back on the road. We got home, ate dinner, and then the whole family went to the public library’s SF reading club so that we could deconstruct I Am Legend.
The next day was about as hectic. I woke up, did some writing, got Caitlin to school, handled some business with the school district, talked to Lars about the MNP project, did some emailing for the City of DeKalb Disabilities Commission, picked up Caitlin, and then headed off to chair a LINC meeting.
The meeting went fine. We finally came to a decision about how to spend some funds left to us after a tragic accident. A teen mother and her child with disabilities died in a car accident a couple of years ago. Our organization received the memorial fund. We are working with a continuing education program for teen parents that is going to use our funds to buy some teen parent advocacy supplies.
We also continued to work with Easter Seals to try and get a satellite office placed in our community. Currently, people have to drive 45 minutes to get center-based pediatric therapies at Easter Seals. There used to be a center here, but it closed a couple of years ago due to staffing problems. I have been agitating for a while to get them to reopen as our community has a great need. We are finally making some progress. After the LINC meeting, I was asked to serve on the exploratory committee by the Easter Seals representative. Being me, I was unable to say no.
I also agreed to rewrite the LINC bylaws this month because I have sucker written on my face. Caitlin and I then got home and worked with her Physical Therapist.
Today is just watching Caitlin, some speech therapy, and packing for Windycon.
Did I mention that I drink a lot of coffee?
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