Welcome to CLU

I am so excited to announce a new campaign. You can link to the new site from Casey's menu - CLU. We will still be posting all of Casey's stuff here.

CLU is set up to provide people with ideas and projects to encourage inclusion in our communities. Our kickoff event is the Trick-or-Treat Project. There are so many kids that are excluded from Halloween traditions. When you participate in the Trick-or-Treat project you are including many kids that are often left out (like Casey). Check out the site, like us on Facebook, and spread the word.

Over the River...

Nope, no river, no woods, just a few blocks for Casey to get to her Great Grandma & Great Grandpa's new place. My mom and John came in this weekend and helped us get my grandparents moved in to a great new place right around the corner. It is so great to have them close by (no more driving to Temple to see them). It made for a busy holiday weekend.

Casey had a busy day yesterday. She started off with school. She did great, she answered all of the questions and participated for the full time. Then she had an ENT doctor appointment. She hates to get her ears cleaned :( It is not fun for any of us. No matter how bad the 5-10 minutes of cleaning are, they don't compare to what she would go through to have the cholesteotoma reconstructed. I will take a few minutes every 3 months instead of surgery any day. Yesterday evening we finished the day with Casey's first trip to see my grandparents new place. She was so tired when we got home.

We are about to head to see the pulmonologist. Hopefully this will be a quick and easy appointment. Then we have about a month with out any more doctor appointments. As always, we hope everyone is doing well.

First Day of School

Casey started back to school today. She had a great day. Her teacher met us at the car and started with a tour of the school. Last year Casey went straight to her classroom so she never really saw anything else. She LOVED the library. Her teacher is going to find a time when Casey can go back and check out some princess stories. After the library Casey visited the gym. There was a class listening to the coach give instructions. When Casey noticed the class she yelled, loud, as if she were saying "Hi guys, I'm here!" It was pretty cute.

After the tour Casey made it to her classroom. The sensory area was ready. Officially the sensory area, unofficially it is called the princess tent. There are a lot of special tools that light up, and respond to sound and motion that are great for keeping Casey's attention. The school put up a black out tent around a corner of the room. The top of the tent is actually a parachute with neon yellow stars. Then, in order for it to not just be a boring black tent, Casey's teacher wrapped it in sparkly fabric. The sparkles are princess approved :)

Casey had fun being inside the tent. She really likes the stars on the roof. She was able to spend some time in the tent and fully check things out. She was making me laugh the entire time I was there. She kept making her happy sounds every time she saw something new. I think it is safe to say Casey loves school. She is such a good student, and she works so hard while she is there.

While we were doing the tour there was a little girl (may 7-8 years-old) that came out of her way to tell Casey how pretty she looked. It was so sweet. The camo outfit that Casey wanted to badly came in on Friday. She was able to wear it on her first day afterall. I am sure the little girl telling her how pretty she looked in it only made Casey love the camo even more. Who knew Casey would like camo?

After we got home Casey was exhausted. She took a good nap. I think she is excited for a new school year. She will be going back tomorrow for another adventure.

We hope everyone is doing well. Have a great school year to all the school kiddos out there.

Back to School

Our school district started back up today. We talked with Casey's teachers and decided it would be best to avoid the craziness of the first day. The plan was for Casey to start back tomorrow. I just got off the phone with her teacher though, and her teacher has gotten sick. Instead of trying to get a sub for the first day (that would not know Casey) we decided to wait until next week for Casey to start back to school.

A few extra days actually works out well. Casey had a GI appointment this morning (she is up to 31.8 pounds now). After we took Casey to pick out some school clothes. She found a few things that were okay, but the one outfit she really wanted was not in her size. When I told her she could not have it she was so upset. She refused to even look at anything else. I ordered it when we got back home. Maybe since we won't start school tomorrow it will be here in time for her to wear it on her first day back. She is such a little fashionista. Her usual look is purple and/or pink. Every now and then she throws me off though. Last year she had to have a blue dress. I think even today that is the only blue thing she has ever picked. Today it was camo. She had to have a green (traditional camo) tutu with a graphic tee. I guess since they were all out of her size she is not the only one that wants it. She makes me laugh sometimes.

We have a couple of new switches we are trying out. A few extra days at home should give us some time to get a better idea on if we like them or not too.

I will post some pictures next week of Casey going back to school. We are going to start with 4 hours a week and build to the 6 hour weekly total. I am not sure how we will split them up. We will wait and see how Casey responds. Until then, have a great rest of the week :)

Special Needs Dance

For any of the special needs family that read this blog, I want to be sure you know about 2Dance2Dream by Legacy of Hope. I LOVE this idea. They will work with your child's ability and needs (all types). Premier Dance in South Austin has teamed up with Legacy of Hope to offer dance class to special needs kids. There will be a recital at the end of the program. All of the classes, costumes, everything is included at no cost to the families. The classes start next week, so if you are interested sign up as soon as you can. There are a few spots left, but they may fill up quick.

This is one of many programs Legacy of Hope is offering. Currently they also offer tutoring and respite. In 2012 they will be adding family counseling, art, and music.

July Review

July was a hectic month for us. Tim had to travel for work one week. Our day nurse had 2 weeks off (luckily not the week Tim was gone) and our night nurse had a week off. There were 2 weekends our weekend night nurse had vacation too. I really miss Tim and our nurses when they are not here. August is getting back on schedule. We are still catching up a little on things that got pushed off last month, but we are close to being back.

On Monday Casey had a fun outing. One of her nurses and I took her to a place where she was able to paint and decorate her own pottery. They had mosaics as well, but Casey wanted to paint not tile. She painted a lovely bowl for her Daddy's birthday. We will pick it up on Saturday. She liked that we went on a "Secret Mission" too. She didn't tell him about it until his birthday. It was really cute.

Last week Casey had a neuro appointment. It was just a follow-up. We did end up changing and adding some new medications to try and help with stiffness and seizures. We are slowly ramping up the dose. It will take 6 weeks to get to her full dose. So far it is too soon to tell if it is going to help or not.

Casey got fitted for new AFOs this week. She picked purple butterflies this time. We should be able to get them in about 2 weeks. Her last pair just did not work for her. I hope this pair does better.

School starts later this month. I am sure I will start working with her school in the next few weeks to get her new schedule worked out. I think we are going to start with 4 hours a week (2, 2 hour sessions) then build to 6 hours. That means we need to go school shopping too. Casey loves to buy clothes. She is such a little fashionista.

That's about it for now. As always, we hope everyone is well.

Casey's Fun Day

We have been so busy this summer. We have a few weeks with fewer appointments so we decided to have some fun activities planned for the princess. Today we met some friends for lunch at Casey's favorite restaurant. Her friend made her a beautiful bracelet with beads and pasta. In the picture they are modeling their matching bracelets. Very cute :)

I have never been able to figure out why Casey loves this restaurant so much. I noticed on our way out today a few other tables with special needs. I think it is located between a couple schools for special needs. The staff is always very accommodating. We just ended up there once, and now every time Casey goes to lunch this is where she wants to go.

After lunch we went downtown. Casey was able to listen to story time at the Children's Museum. They read four stories. Casey payed attention and seemed to really enjoy all of them. After the stories we checked out the rest of the museum. She was not quite as into the rest. It was loud, and crowded. I think between being out of the house for a while and all the noise and people it was just too much for her. I picked her up for a little bit and she calmed down. When we asked if she wanted to go home though, she gave a definite "YES". On the way to the car she saw a waterfall (in the city hall parking garage of all places) that she thought was kind of cool.

Casey talked the whole way home. I think she had fun. It is still "Casey Day" so she is watching movies now. Hopefully we can find some more fun stuff to do in the next few weeks before her schedule fills back up again.

It was soooo hot today. I think it is the 14th or 15th consecutive day of 100+ degrees. Maybe we will get lucky with some rain and a break in the heat for our next outing.

You can kind of see the small white pillow behind Casey's pink pillow in the pictures. It stretches down to her waist and forms around her body (sort of).

Have a great weekend.

Pillow

We got Casey's new pillow on Thursday (6/30). The rep met us at therapy and he and Margaret helped me and Casey's nurse make a bunch of adjustments to the pillow and her chair. The pillow was much smaller than I expected. It does help. I think Casey is much more comfortable and she is not laying on her arm turning it blue anymore. However, I don't want other families out there to think the pillow is a magic cure to positioning issues. I am glad we got it. We are using it. Each time we load Casey we are still making adjustments. We are going to try it out for a little while. We may end up trying a bigger a size. I don't know yet. I didn't take any pictures during the setup (Casey was not happy). I will try to post something soon to show it in use. It looks like a small white pillow. Unless you squeeze it, you would not know it is anything more. It has a terry cloth cover, and the inside feels kind of like a combination of a bean bag and an air mattress. I am going to wait until I have a better idea if it is a good fit before I add it to our review section. I will post more soon. As always, we hope everyone is well.

Casey's Jams

As many of you already know, Casey LOVES music. A while back she was very into hip hop. Which was really funny as no one around her was listening to hip hop, and we had no idea where she got it. A friend of ours turned us onto an album that we played many times of the years. It is hip hop beats to nursery rhymes. Casey thought it was so funny- Baby Jamz Vol. 2. If anyone is looking for a change to the regular nursery rhymes, I highly suggest it.

Lately Casey has been listening to Pandora a lot. She has a bunch of different stations that play a variety of songs. This weekend we added the "Alvin and the Chipmunks" station. I have been very amused. So amused, I had to share. There is lots of chipmunks, and some party, upbeat type music (Katy Perry, Black Eyed Peas, etc). Then of course the expected Sponge Bob, Veggie Tales songs. There is one set of songs that I had never heard of before, but I love them. If you have not heard of Gummibar, check him out. It is like club music meets Sesame Street. He has a bunch of songs, and they are all hysterical. Apparently he is a YouTube sensation. I had never heard of him. Casey and I are a huge fans now.

Highlight

Casey was picked as this month's Highlight story on Hand to Hold. If you are on Facebook you can "like" the story.

Also, the next Lunch and Learn has been set. If you are interested in attending please be sure to RSVP.

Casey has a new pillow system that we are getting fitted Thursday. It should make positioning in her wheelchair a lot easier. We will be sure and post some pictures later this week, as well as an updated Review of the item.

Also, be sure and check out Downloads. We have added a few new files recently.

I will post pictures and more after Thursday. Until then, we hope everyone is doing well.

Hot Hot Hot

This summer got started and has not let up yet. We have already had multiple 100+ days. Since Casey (and I) and not big fans of being hot, we are staying inside as much as possible. I think we are going to have to have me or her nurse go start the car after therapy while the other one stays with Casey. The car is so hot after just 1 hour in the parking lot.

Casey has been enjoying her relaxed summer schedule. School is coming to her over the summer. She will be back in the classroom in August. Her OT and Speech at the hospital have decided to work together. That has been a nice change too. Instead of going up there 3 days a week for therapy we only go 2 days now.

We have a few doctor appointments coming up. All routine, nothing to worry about. In July we see Casey's neuro. Her arms are getting stiffer every day. I think we are going to try Botox in her triceps this time. We never saw any improvement in her legs. When we injected her thumbs though it helped a lot. I really hope that injecting her triceps can get her bending a little easier. We will see in July.

We have finally found a night nurse that wants Friday & Saturday nights. She started last weekend. I love having all of our nights covered. It was killing me to be up all night Friday & Saturdays, then still have to function the following days. Tim was great about letting me get some sleep. But, I didn't want to sleep all day. We both had things to get done during the day. Having the night shifts covered is WONDERFUL. The new nurse seems to be picking up on Casey's little noises and needs pretty quick.

Last week was fun. A friend of mine and I presented the Lunch & Learn about stuff to do in the Austin area this summer. Hand to Hold was the sponsor of the session. There were only a few people, but I think it went well. Next month we will discuss the different types of specialists, and some medical terms that you hear a lot when in the hospital (especially NICU). I hope each month we got more people. Last week was a good kick off, I think, to what I hope will become a great program.

That's pretty much it. I haven't taken/posted many pics lately. I will try to get some in the next week or so to post. Until then, we hope you are all doing well. Have a great summer, and don't forget the sunscreen :)

Homemade Toys & Activities

A while back I was given a packet with all kinds of great ideas for the Blind and Visually Impaired. Casey and I have made a few of the toys and activities from the packet. I have uploaded a copy of the document and added it to the downloads section of this site. Feel free to grab a copy and share with anyone you like.

Updates

Wow, it's been a while since I last posted. The last weekend in April was a pretty big deal. Tim and I took our first overnight trip, without Casey. We had a team of nurses scheduled, and others as backup (just in case). We left that Friday around lunch, and got back Saturday afternoon. We went to Vegas to meet up with Tim's brother, his wife, and some of their friends. It was an early celebration for his 40th. We had a lot of fun. Casey did not miss us at all. That's a very good thing. Everything went really smooth. I think our next trip may be for 48 hours :)

After we got back we had a couple of rough weeks. Tim got pretty sick. Other than work, he pretty much just slept for nearly a week. As soon as he was feeling better Casey and I spent a week sick. I think what ever bug we had has since moved on (thank goodness).

We had a nice Mother's Day. We all drove up to Temple to have lunch with my grandparents. They are not that far from us. However, with Casey, her equipment, and everything else, it can seem a lot further away than it really is.

Casey's has just 1 day of school left for this year. I am sure she will enjoy the relaxed schedule for a few months. I think in August we will try to go to 4 hours, then work our way up to 6. I don't know that she will be ready to dive right in. The 2 hours a week now wears her out. We will just have to see what she is up to and go from there.

Other than that, Casey doesn't have a lot going on right now. I do though. There is an organization in town that I really like - Hand to Hold. I pitched an idea to them a little while back, and it is getting rolled out. I am very excited. Our first Lunch & Learn will be in June. I hope that it has a good turn out.

As always, we hope everyone is well. I will try to post sooner next time. I did not realize it had been so long. Have a great rest of the week :)

Pictures

Where Does the Time Go?

April has kind of flashed past us this year. Casey started school 4/1 and has been busy since.

On the 16th we took Casey to the Walk and Roll that Texas Parent to Parent and OI hosted in Round Rock. She had a lot of fun. She got to see lots of her friends. There was a little walk, then the kids got to hunt for Easter eggs. It was kind of cool. They hung some of the eggs on string from the trees so that the wheel chair kids could see and reach them. Casey lasted nearly 2 hours. That seems to be her cut off point. She does great, then instantly is ready to be home. Not go home, but BE home.

Last week we were part of the pre-recorded interviews for Radiothon. It was fun. I got to go to the radio station and tell them about Casey and our experiences with Dell Children's. They invited us to come back and do the live interviews on 5/19-5/20. We will have to just wait and see how our schedule looks.

Tim's mom and brother came in late Wednesday. Casey got to show her grandma how she does flips in the pool Thursday. Then Friday we all went to Morgan's Wonderland.

Saturday Casey turned 5!!! She had some of her friends over for a princess party. They all made tiaras. I think everyone had a really good time. We kept the party short. Casey hit her 2 hour limit just as things were winding down.

On Sunday my family joined the rest of us for Easter and a family birthday party for Casey. It was a nice time. Good food, and good company. Casey is starting to get to a point that she gets excited about presents now. Her Aunt Megan opened them while I held her up to see them. She would get very excited as Megan showed them to her. It was pretty cute.

On Monday Casey showed her grandma her new classroom. Then Tim's mom and brother had to head to the airport. It was a busy, busy birthday weekend.

This week Casey starts her doctor rounds. She saw her pediatrician this morning for her 5 year check. We see ortho tomorrow. Then over the next month we see the rest of them. Casey woke up with a low grade temperature and early signs of an ear infection this morning. We will have to keep an eye on that over the next few days. Her doctor took a culture while we were there this morning.

I will post some pictures from this weekend and last later today (or tomorrow). Until then, we hope everyone is well.

Such a Cutie

Yesterday, after Casey went swimming, she was in such a good mood. This picture is too cute not to post :)

Texas Parent to Parent & OI's Walk-Hop-Roll

Tim and I have a few resources that we rely on for all kinds of things. One great resource that we lean on a lot is Texas Parent to Parent. Each year TxP2P teams up with OI (Osteogenesis Imperfecta) to sponsor the Walk-Hop-n-Roll. These are both great organizations. We don't do our own team. It is too hard to plan ahead for stuff like this with Casey. We are happy to support other teams though. If you are interested in learning more, or contributing here is a link to Daniel's team.

Daniel has OI and his mother is part of the TxP2P staff. Even though the diagnosis is nothing alike, the symptoms of Daniel and Casey are fairly similar. Over the years we have shared many nurses, doctors, stories, etc. He's a really neat kid, and his mother has helped us answer many Casey questions.

First Day of School

It's official, Casey is a big girl now. She had her first day of school on Friday. She is just doing 1 hour 2 days a week for now, but it's a start. She seemed to really like it. Her first day was more just to let her see things and finalize all the documents and stuff the school needed. Her second day this week she had her first lesson. She is learning about Spring and things that grow. She made a flower out of clay. Her nurse stays with her, and I wait down the hall. The classroom is great. The school did a great job getting all the equipment Casey needs to be safe and comfortable. Hopefully next year she can have a few other students join her. Here are some pictures of her first and second day.

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.