New Glasses

Casey went and picked up her new glasses today. They are so cute. I knew they were Disney Princess glasses, but I did not realize they are Belle glasses. Belle is one of Casey's FAVORITE princesses. They are a dark purplish color with a pink inside. They have little flowers etched in and some bling in the middle of the flowers. Very Casey. Instead of a standard glasses case, they came in a little pink purse.

She was so funny. When we got to the office she knew she was there to get something special. She perked right up as we wheeled her to the fitting table. The adjustment guy showed her the mirror then let her watch as he fitted them.

When he got them on and moved his hand so she could get a good look she made everyone in the store smile. As soon as she saw them she let out a very loud, very happy sound. I think she approves.

The lighting on the picture I took makes them look black. They are purple, and super girly. We will let her pick out a new outfit next week for her first day of school. She is going to be so cute. What am I saying, she already is so cute. She is going to somehow be even cuter though going to school like a big girl :)

School Update

Casey's school has created a medically fragile classroom/program. They designed it largely based on Casey's needs. It has been kind of exciting. We have been given the opportunity to help design the program. The classroom is being built in Casey's home campus (just down the street). To start she will be the only student. There are 2 other kids that may join her soon.

We are going to take baby steps. In April Casey will start going to school. She will go for 1 hour, 2 days a week. We will slowly work up her endurance. Next year the goal is to have her attend school for 6 hours a week. This may be 3 days at 2 hours each or 2 days at 3 hour each- what ever seems to fit Casey best.

They have ordered a lot of special equipment to help create a safe and comfortable learning environment. The district has put a lot into the program. All of the staff we have been working with are very excited about the new class. Casey is getting excited about it too. She has been reading lots of books about going to school. She's been watching lots of shows about school. Her therapists have been bringing things by for her to see what will be waiting for her at the school. I think she will like it.

On Thursday when we went to see the class and work out a schedule things were not fully in place. They showed us pictures of everything that is on order, and we saw what they did have. They expect over the next week or 2 to finish setting things up. We will take lots of pictures when we go up for the official first day of school.

We are excited for Casey. This is a HUGE step for her (and us). We feel good about it. The school has listened to our concerns. They have done a good job addressing all of our safety needs. I am sure with it being a new classroom and a new program there will be some adjustments as things get going. It's very exciting. Casey's nurse will be going to school with her. I think she is almost as excited as Casey. We will keep everyone posted with pictures and details. Now I just need to find the perfect first day of school outfit for the princess.

Busy Week

Casey had a very busy week. Last week during water therapy we noticed her left toe was all red and swollen. We could not tell if it was an ingrown toe nail or a pressure sore. Over the weekend it got a little better, but not fully. Over the weekend we noticed her left ear (the cholesteoma) was draining a lot. Between the toe and the ear we knew we had to see a few doctors this week.

Tuesday we packed everything up for the day and started with the podiatrist. I was a little leery since there are no pediatric podiatrist in town. We needed to get Casey's toe checked though so we used the doctor her pediatrician recommended. He was so nice, and very gentle with Casey. He said it is hard to tell for sure, the redness could be either of our concerns. Since it was getting a little better we were to just stay the course. You can still see some pink today, but for the most part I think it is better.

Next we had Casey's annual eye exam. Last year we noticed a weird area in Casey's right eye. The doctor said it was from being too dry. We treated over the past year and it looked the same if not worse. So we talked about it some more with the doctor. Casey sleeps with her eyes open fairly often. In order to try and maximize moisture she is sleeping with an eye patch now. The doctor gave us a hot pink one. I have to say, Casey is the cutest pirate ever. She doesn't seem to mind it either. Casey also ordered new glasses. She has been on a purple kick. She got pink & purple princess glasses. They should be in later this month.

After lunch and OT Casey had an appointment with ENT. Sure enough the drainage was an indication of infection. The doctor cleaned out her ear and sent us home with some drops. Casey has had these drops before. They always seem to kick in pretty quick.

On Friday we took Casey in to get her AFO's readjusted in case they were part of the toe issue. When we were making our way across the parking lot her orthopedic doctor saw us. He came over to say hi and check up on Casey. Casey's right ankle has dropped some and he was a bit concerned. Good news though. Later that day Casey's PT brought her a foot drop splint. We have been putting it on for a few hours, off for a few since Friday. Already her ankle looks much better.

This week is spring break. Casey will still have all her therapies up at the hospital, but no school therapies this week. I am sure she will find plenty of fun stuff to fill her free time. On that note, there is some school news to report as well. I think I will do a separate post for all of those details.

2010 Numbers

Each year I feel like time goes by faster and faster. I always find myself wondering where the time went. I took a little time and ran some data for 2010. The numbers are pretty crazy.

If you look at our Resources tab you can see that there are many people contributing to Casey's well being. It truly does take a village. Tim and I are so grateful to the amazing people we have helping with Casey.

In 2010 I ran numbers for doctor appointments, therapy appointments, and nursing shifts. I just focused on Casey's health related visits. I did not add up the monthly (or more) visits from the nursing agency to come out to do paperwork, assessments, etc. I also did not add up evaluations from different professionals for services, new therapies, equipments, etc. I did not include numbers for the calls we made to health care professionals (some resulted in appointments, but many did not). I did not include numbers for the appointments and meetings Tim and/or I had on Casey's behalf (school, services, etc). In addition I did not include special needs fun activities (play groups, parties, trips, or Casey's Make-A-Wish). Not to mention, there is nothing tracking the time we spend making appointments/managing Casey's schedule, ordering supplies, training staff on Casey's needs, dealing with insurance or other billing issues, etc.

Casey had 65 doctor appointments in 2010. These include visits to the pediatrician, specialists, 4 EEG appointments, and 6 AFO adjustments. There was a period of nearly 4 months with weekly appointments to address her ear wound this year. Each specialist sees Casey at least twice a year, some as many as 6 times a year.

Next I added up therapy appointments. Casey had 248 therapy appointments. These include physical, speech, occupational and vision at home. This number also includes physical, water, speech and occupational out of the house. There are a few music and massage therapy appointments in this number as well. Sadly those are both on hold for now. Hopefully they will pick up again soon.

Finally I added up nursing shifts. On an average week we have Tuesday-Friday days covered (8 hours). We also have Sunday-Thursday nights covered (8 hours). On a good week we get a respite shift or 2 as well (3-6 hours). When I added these up for 2010 Casey had 461 shifts covered.

Happily, there are no hospital stays or surgeries to add to 2010's numbers. That always makes it a good year. We are hoping to get Casey into school in 2011. I am not sure how much that will affect these numbers next year. I guess time will tell.