Drug Allergies

It has been a little while since we have added a drug to the allergy list for Casey. Sadly, we now have one to add. Back in August we started a new medication that was supposed to help with tone. Casey is so stiff. We started with her hips dislocating due to stiffness, then knees, now her elbows are also dislocated. There have been a few different drugs (including Botox injections) that we have tried over the years. Some just never worked so we stopped using them. Some caused muscles to relax in the wrong way and lead to breathing issues. The latest on our list of ineffective tone medications is Dantrium.

We had to build up to a full dose. This took all of August. We noticed right away that Casey's wet diapers were much less frequent. We decided we could deal with that, at least she was still going. Then around the time we got to full dose we noticed we were suctioning a LOT more than usual. After a couple weeks of increased suctioning we noticed her gtube was leaking more than usual as well. This let us know that reflux was most likely the cause of both. We tried to give her more breaks in feeding, but it did not help at all.

About 3 weeks ago we noticed the gtube drainage was looking dark (coffee grounds). This indicates a GI bleed. We learned all about GI bleeds almost 2 years ago exactly when we were last in the hospital. Luckily since we knew what it was, we were able to act on it. We have a medication for Casey to help counter act the bleed. It coats her stomach and also helps reduce reflux and nausea from the blood. We started this as soon as we noticed the drainage.

After about a week of dealing with the bloody drainage, we noticed Casey's heart rate was getting higher and higher. This indicates a couple of things, pain, fever, or dehydration. Her fever was never high enough to cause the elevated heart rate. We tried giving her fluids, but they did not help at all. Finally about a week ago we realized we were not making it any better and it was time to call the doctors.

As it turns out, the dantrium has a list of side affects that include- GI bleeding, urinary retention, and abdominal pains. The next step was to get her off the medication. Dantrium has withdrawal issues, so we have to ween her off. If we just stopped it could add even more problems. Casey's neuro is helping us ween her off. While we are weening her Casey's GI doctor has increaded the medicine used to counter act the bleed. And Casey's palliative doctor is giving us some strong pain medication to help keep Casey comfortable and get the heart rate back down.

It has been a long few weeks. The bleed does seem to be a little better, and we are getting some wet diapers again. Casey's last dose of Dantrium will be on Wednesday. We are still having some trouble with her heart rate, but the doctors are helping us.

Casey has missed a lot of school and therapy since she has been feeling so bad. I was hoping to get her back on schedule this week. It is looking like it may be another week before we are back to normal. I will post more when we get her off this drug and hopefully back to her usual routine. Until then, we hope everyone is doing well.

Be sure to check out CLU if you have not already. There is still time to participate in the Trick-or-Treat Project :)

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.

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.

Long Week

Last week was a long one. Casey woke up around 3:30 AM Monday morning with a 102.8 fever. Ugh! I went in and helped her night nurse start pushing Tylenol & Motrin. We were able to get it down to about 100, but we could not get it back to normal.

When her doctor opened @8:30 we called to see about getting Casey an appointment. They were able to see her @11:30. We kept pushing medicine (as often as they are allowed). In addition to a cool rag and a fan she seemed to be a little more comfortable right when we were heading to the doctor.

The doctor ran a few tests (strep & flu) then sent us for chest x-rays. Everything came back negative and clean. The doctor called Monday evening with results and determined it must be viral.

Everyday last week we were up at 3:30. I think we went through an entire bottle of Tylenol. Luckily no more 102.8 fevers. I think we saw a few 101's, but mostly we were 99-100. Finally this weekend Casey seemed to be feeling a little better. Until Saturday she did not want to do anything other than cuddle. Saturday she played a little and stayed awake most of the day. 3:30 came and went Sunday morning without a peep. Casey slept until about 5. That is still early, but so much better than 3:30. This morning she slept until almost 6.

I think this week will be much better. Casey should be able to get back to her routine, and hopefully everyone can get some sleep.

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

Updates

Casey has been doing well. She has been on a princess kick over the past 6 months or so. I think she has decided she IS a princess. It's pretty cute.

There is not much to report. Casey has been keeping busy with her therapies. No recent doctor appointments. We did have to get her AFO's adjusted (again). During this adjustment they mentioned if we have to go back again soon that it may be time to talk about having them remade.

Casey's nurses are all doing well. It is nice to be back on a normal schedule. Her day nurses are taking off during Spring Break, but it is just 1 week.

Casey got a new switch. This one is called a Mercury Switch. We stuck it to a wrist band so it will fit Casey. It doesn't work for all of her toys. For the toys and tools it does work with, it seems to work well. We are still getting used to it.

That's about it for now. We have a meeting with the school in a few weeks. Other than that we are just keeping busy. We hope everyone is doing well.

3 in a Row!!!

Last week Casey had an appointment with her GI. This was the third doctor appointment in a row that went great. Casey is FINALLY back up to 30 pounds (her weight before getting so sick a little over a year ago). The doctor was very pleased with her progress. No changes. I love when appointments go well :)

Casey's nursing situation is going really well. We have finally found a nurse to fill in our 3 open day shifts. The other day nurse ended up picking up Friday nights. With her primary night nurse covering 5 nights that just leaves us with 1 night shift open. We have a great group of nurses doing respite now too. Virtual knock on wood; things are good. Casey seems to really like them all too.

I am starting to plan Casey's birthday. April will be here before I know it. I think this year will be a princess theme (of course). We are still working on some other details.

That's about it for now. The temperature is supposed to drop down into the teens in the next couple of days. We will be staying home and bundled up. We hope all of you are doing well, and keeping warm.

On a Roll

Wow, we have had 2 great doctor appointments in a row. I posted last time about pulmonary going so well. Last week Casey had an ENT appointment. Usually the ENT has to vacuum Casey's left ear to clean out the cholesteoma. This is never fun for any of us. It has to be done to keep the ear healthy and prevent a full ear reconstructive surgery. This time we went in expecting the usual. Instead the doctor took a peek and said it all looks great. I don't know if Casey or the doctor was happier.

We had a rough weekend. Casey was not feeling well. She started to get a little sick Saturday. She seemed so miserable. Around Wednesday she seemed to be done with fevers. Casey was still fussy and not happy though. Yesterday afternoon she finally started to perk up. She went right to be last night and we thought for sure that with a good night's sleep she would be all better today.

The good night's sleep did not happen. Around 4:am Casey was up. I was up a little before that as well. It dropped into the 20's last night (very cold for this area). We had to run the heater. We did not have it set high at all. However, it ran enough to make the air really dry. I was uncomfortable myself. I was not very surprised when I heard Casey up. She is very hot natured like me. It may have been a combination of the dry air and remnants of her cold. What ever it was, Casey did not get a good night's sleep.

She started the morning off a little rocky, but I think she is feeling MUCH better now. She has been talking and playing some. Her heart rate is back down too. We plan to have a quiet weekend. I expect she will be able to get back to her routine by Monday. Tim grabbed a humidifier over lunch. I think that should help too.

I think we finally found a nurse. We have had Tuesday & Thursday covered for a little while. Starting today we have a nurse that seems to be a good fit for Monday, Wednesday and Friday. I think Casey likes her. If things continue to go well, then I think we are done looking for a day nurse.

I think that is about it for now. We hope everyone is doing well.

Back to Usual

The holidays are over and we have been busy getting back on schedule. Casey had a pulmonary appointment last week. She did good. This was one of our better pulmonary appointments. I don't know why, but she usually seems to get worked up right as the doctor comes in to see her. Then I look like a crazy person trying to convince him that she usually breaths better and doesn't always sound that bad. This appointment is the first I can remember with him that Casey stayed calm. He seemed happy with how she is doing. No changes from him for now.

This week Casey has to get her earls cleaned/checked again. She hates that part. Thankfully it is quick then she is done for a couple months. It is still better than the alternative (ear reconstructive surgery). All of Casey's therapies have started back up too.

Her PT at Dell broke her arm ice skating over the holiday. The past couple of sessions with have been with another therapist. The cast came off last week just after we left. This week we have some other stuff going on, but Casey will be back with her starting next. Casey always does better if she knows/trusts the therapist.

All of Casey's school therapies have started back now as well. Tim and I have a meeting coming up soon to talk about the steps taken since mediation and see what is next.

We got some really exciting news this weekend. One of Casey's favorite nurses took another job a while back. She has come by to visit from time to time, but has not been able to work with Casey since her license expired. She sent us a message saying she is legal again. She is going to do some respite. I don't know how often, but I know Casey will be thrilled. It's great for Tim and I too. It makes it so much easier to leave the house when we know that Casey is safe and happy with her respite nurses. I don't know how we have gotten so lucky. We have 4 wonderful respite nurses now. They all have other full time jobs. Between them we are able to get out of the house almost weekly :)

Casey has a great night nurse. She works 5 nights a week. We hope that they can find someone to cover the other 2 nights sometime soon. We are still looking for a primary day nurse too. We have one day nurse that can do 2 days a week. We really like her, but we need a full time person. We have another that has been picking up 1 day. She is in school and as of 1/19 she is no longer available. I know we will find one eventually. It is just taking a while.

I think that is about it for now. As always, we hope everyone is doing well.

Happy New Year

2011! Wow, how did that happen so fast?! We hope that everyone had a nice Holiday season this year. We had a very nice time. The few weeks before Christmas, Casey had a couple visits from some old friends of hers. One of her previous teachers came by for a little bit one evening. Another day one of her previous nurses came by with her husband. Casey was excited to see them all.

Casey has a lot of teeth coming in right now. I was a little worried that one looked bad, maybe even infected. Rather than waiting to see if it got worse over Christmas weekend we went ahead and took her in to see her dentist. Casey LOVES going to her dentist. Luckily everything checked out. It is just swollen from the tooth trying to break through.

Emily (Casey's respite nurse/BFF) came to play with Casey some so that Tim and I could finish up all of our holiday shopping and errands. They call it their slumber party when Emily comes over and puts Casey to bed while we are out. They always have a good time.

Over Christmas weekend my mom, brother and John stayed with us. The rest of the family joined us Christmas day for dinner and gifts. It was a really nice time. Casey was very good all weekend. She was quiet, but good. After everyone left on Sunday she got lots of attention to make up for a busy house. That seemed to be what she wanted/needed.

This past week was pretty quiet. We have been putting holiday decorations away and cleaning house. A friend of mine came over with her 2 little girls for a visit. I wish I had grabbed the camera. Casey had a tea party for them when they arrived. Then they made her some princess chalk murals on the back porch. Casey loved the artwork. She has been very into all things "Tangled" lately. One of her friends drew Rapunzel just for Casey. It was all very sweet and so cute.

This year was the first year that we let Casey stay up on New Year's. Routine seems to help her manage her days, so bedtime is usually pretty standard. We asked if she wanted to stay up and she was very excited about the idea. She fell asleep for a little bit, but she woke up around 11:30 and lasted past 12. After we all toasted in the new year, it was straight to bed.

2010 was a full year. We got off to a rough start with Casey being so sick. By April she was doing so much better. She was able to go to the movies with family and friends, thanks to Make-A-Wish, US Money Reserve and KVUE. She was able to meet an elephant in person, and even touch it, thanks to my mom, John and the wonderful staff at Houston Zoo. There were many friends and family that went out of their way to come visit us this year. We have even managed to meet some new friends. All in all, it was a great year. We are looking forward to a wonderful 2011. We hope that 2011 is splendid for all of you as well. Happy New Year!

Holiday Party

My little baby is so grown up. We have been telling her all about Santa for a few weeks now. She understood that she had to tell him what she wanted for Christmas. At the party this weekend she waited for her turn. When Santa came over to her she was ready for him. The second he bent down to say hello she started telling him everything. It was so cute. Her talking is just sounds, but you could tell she was giving him her list. I wish I knew what she asked for so I could be sure she gets it. I will just have to keep my fingers crossed that I guessed right.

Her school therapies finish up this week then she is off until the new year. She is pretty busy this week. She saw her neuro yesterday. That went well. She has not had one of her seizures in about 3 weeks now. That is very good. Nothing changed though. Maybe we just had a bad batch of medicine or something.

Casey went to see ortho this morning. Her PT noticed that her knees felt more bony than usual. The doctor wanted to take a look and see what was going on. He said they are okay, she is just stiff and hyper extending some. We had him check her spine and ankles too. For now we just stay the course. She will go back in March and get a full round of xrays.

While we were in ortho we had the brace guy check her AFOs. They have been bothering her some lately. He stretched them out a little. If she still seems to be irritated with them then we will have to go in to his office soon for a full readjustment. This pair of AFOs has given us so much trouble. Her last pair never had to have any adjustments at all. She is growing so much now that everything just keeps changing.

We are trying to get our Christmas shopping finished up this week. Next week some of my family will be in town. Christmas is at our house so Casey can participate. I am so glad that family is flexible enough to come to her. We will post pictures and updates after the holiday. We hope everyone has a safe and merry Christmas.

Looks A Lot Like Christmas...

I LOVE this time of year. Crisp, cool nights and warm, sunny days. Everyone is getting Christmas lights hung. I don't know what it is about Christmas lights, I just see them and it makes me happy. We put our tree up this weekend and Tim got the outside lights done last weekend. Now all we need to do is finish shopping.

Thanksgiving was okay. Casey was a bit sick the week before, but she was feeling better by Thanksgiving. Her cousin Riley and his mom stayed here the night before. She and Riley got to play a little and watch the parade. Casey liked the parade; Riley did not seem to care for it. My other sister hosted dinner this year. Tim stayed home with Casey and I went down to eat and visit with family for a little bit. Of course, I brought home some turkey and trimmings for Tim.

We have not had much luck finding a new nurse. They sent out a couple, but neither really worked. One was okay, but not great. The other was a mess. We just found out yesterday that one of Casey's previous nurses (that we really liked) is going to be able to take 2 days a week. We still have to find someone for the other 3 days and our 1-2 night shifts. We'll get there. We would rather take our time and find the right nurse(s) than just fill in the shifts with a warm body.

Since we have not had much help we have had to adjust some of Casey's activities over the past few weeks. Hopefully we will get everything straightened out soon so we can get back to a normal schedule after the holidays.

Some of you may know that Casey does not like cats. We always just figured it was because movies make them out to be villains. Turns out there is more to it. She went to a party at a neighbors this weekend. They have a few cats. Usually when we are over there she stays in her chair (high above the cats). There were some kids playing on the floor so I took her out of her chair and sat on the floor with her on my lap. In just a couple minutes she started sneezing and wiggling all around. I handed her to Tim to get her back in her chair. He held her for a few minutes and she was just getting worse. We had to leave the party pretty quickly. As soon as we got home we noticed her entire body was covered in hives. I worked to clear her out and get her positioned while Tim grabbed the Benadryl. She started to calm down right away (just removing her from the environment). As soon as the Benedryl kicked in the hives went away and she took a good nap. Poor baby :( She is horribly allergic to cats. I guess she tried to tell us.

This weekend Casey is going to a Christmas party (no cats). She will get to see Santa, sing, make decorations, etc. I think she will have a good time. We'll post some pictures of the party next week. Hopefully we can post some good news on nurses as well. Until then, we hope everyone is doing well.

We're Back!

We are back online!

We took Casey back to Morgan's Wonderland on Friday. She had a good time. We took her nurse, Emily, with us this time. We also made it just a day trip. The weather turned out to be wonderful. It was a fun day.

Emily took Casey down a slide. We learned very quickly that Casey does not like slides. We will not be doing that again. Her favorite part of the park is still the water exhibit. The picture is her watching one part of it.

Emily is on her honeymoon/destination wedding this week. She will be back next week for a few days then start her new job in December. We had a new nurse come out on Tuesday. She was nice, but we have decided to keep looking. There was another one scheduled to come out yesterday. She canceled last minute though. As of right now we are just waiting. As soon as they find a good candidate they will send her/him over. It could be days, weeks, or longer.

The good news is that with night nurses at least I can get some sleep so I can better handle taking care of all of Casey's stuff alone. The hardest part is getting her to and from appointments. My sister took off today to help me get Casey to a full day of stuff.

We started the day off with an appointment with the wound clinic. I am VERY happy to say that Casey is finally done. Her ear wound has closed up and looks better. There is a bad scar, but the wound is healed. We will do some scar massage and see if we can get it to go down some too. Her OT made Casey a special pillow that we can use to keep the pressure off moving forward. We will pick it up next week.

I think my sister actually had fun spending the day with us. Casey did really good with everything. Megan had not been in the car with Casey since our trip from LA. She was surprised at how much the chair, and repositioning has helped with travel. It is still difficult, but so much better.

Lots of family is coming in next week for Thanksgiving. We are looking forward to spending some time with everyone. I am still in shock that it is already Thanksgiving though. This year has flown by.

That's about it for now. We hope everyone has a fun and safe holiday. We will keep you posted on our nurse hunt :)

Updates

Our blog is down right now, so I know this won't be read for at least another week. There has been a lot going on lately so I wanted to blog while things are fresh on my mind.

Overall Casey has been having less seizures, or crunches. However, when she does have them they seem to be getting more severe. She will crunch and twitch, then after 10-20 seconds she will come out of it and cry really hard. We can't tell if she is hurt or scared. The days she has 1 she usually has 3-10. After a couple she starts to get really upset. When we go through the questions of what is bothering her she lets us know that she has a bad headache. These headaches usually last about 2 hours. During the 2 hours she wants it silent. She can not stand any noise at all.

We have been trying to catch the twitch on video but have not had any luck. Tim is looking into getting a new camera that we can prop up in front of her and just let it record for a while to capture the seizure. We have also contacted her doctor about the headaches. Hopefully they will get back to us today with something stronger than Tylenol to treat it.

The reason we have taken the blog down is related to a lawsuit. Over the past few months we have been trying to work with Casey's school in order to get her more appropriate services. After hitting a brick wall we ended up hiring an attorney. Right now we are in the middle of trying to reach an agreement. We hope that no one would, but just in case, we took the blog down so it could not be "misinterpreted" and used against us. We hope to have some sort of resolution in the very near future. As soon as we do we will reopen the blog.

Last week Casey started speech therapy up at Dell. She never likes therapists on the first day. The speech therapist was no different. Because of scheduling issues she will not be able to go back until after Thanksgiving. Hopefully her next session will go better.

This week Casey will start her cranio/massage sessions at home. I am excited to see how she responds. I know she loved this back in LA. I guess it will all just depend on the therapist.

We got some bad news yesterday. Casey's nurse (whom we all love) has been offered a job that she can't refuse. The job is very exciting for her. I know if I were in her shoes I would have made the same choice. As much as we want to be happy for her, I am a bit stressed about going through the nurse selection/training process again. At least this time around we have night nurses. That makes a HUGE difference. I hope that we find a good fit soon.

The good news is, Casey's nurse that is leaving lives just blocks away. We still have someone close by for emergencies. Also, she wants, at a minimum, to still do weekly respite for Casey. We will figure it all out. It may be a stressful few weeks/months, but we'll survive. As long as Casey still gets to see her BFF every now and then she should be okay.

Hopefully we will get the legal stuff all worked out soon. When we do, the blog will be back online. Until then, I guess I am just writing for myself :)

Some Recent Photos

Casey in her nurse costume heading into the hospital for some trick-or-treating.























I hate to admit this, but this is Casey wrapped up in a Snuggie. It was cold the other day and this was all we could grab while we were out. I have to say though, it is PERFECT for her. If you have someone in a wheelchair, these really are great. This is so much easier than wresting with Casey to get her in and out of jackets/coats. We will use this a lot over the winter.















Casey has started singing with a microphone during her music therapy. She is such a little rock star. She even tries to eat the mic :)





















Casey out to lunch with the girls. She really enjoys being a big girl now. She liked the chili pepper on the Chili's menu.

Trick-or-Treat

What a fun day! Casey put on her costume (she is a nurse this year), then we spent the morning out. We went by to visit Casey's doctors. She loved it. She got to show them what a good nurse she is.

When we stopped by the hospital to see some there we were invited to take her trick-or-treating in the halls. The hospital set up all kinds of fun stuff for the kids. We were just planning on saying hello and maybe getting a sticker or two. Instead, Casey cleaned up. I think she likes trick-or-treating. It was great because nothing was edible. It could not have worked out more perfect for her.

Casey's ear infection seems to be healing well. Since she is feeling okay she has a lot of fun stuff planned. Today was visiting the doctors. Tomorrow she gets to go to a Halloween party. Then Sunday she gets to trick-or-treat at a few neighbor's homes. Her nurse lives just down the street and a couple other neighbors are going to have non-candy treats just for her.

Have a happy and safe Halloween!

Updates

Last week was pretty quiet around here. We were way over due for a quiet week. We did get back to our busy schedule this week however.

In addition to all of Casey's usual therapies she had a few extra appointments. On Wednesday Casey had an ENT appointment. We had been seeing some drainage and worried that she may have an infection. Sure enough, her left ear was infected. We caught it early this time. Hopefully it will get all cleared up quickly.

After ENT Casey had her teeth cleaned at the dentist. My kid is so weird. She is the only kid I know that LOVES the dentist. Casey was so excited to go and just has the best time. They are great with her over there.

We are still working on getting Casey some regular cranio therapy sessions. The group we found came by to do an evaluation on Thursday afternoon. I expect they will be in touch soon to set up a regular weekly appointment.

Thursday was fun. Casey had music therapy. After Casey sang we went out to lunch. Casey likes to lunch with girls. She read the menu and chatted for a bit. Then she fell asleep watching the people around her. After lunch she had PT. Then we got home just in time to meet the cranio therapist.

Some family is coming by for lunch today. Casey always enjoys visits with family. As always, we hope everyone is well.

Resting Up

Last week was one of the busiest for us. Casey got Phenol injections in both legs last Monday. The doctor said we would see results right away. Sadly I don't think it did anything at all. We may talk with Casey's neuro about trying Botox in her elbows since it worked in her hands. I just don't know if we will ever find anything that works on her legs.

Then last Tuesday Casey got a hair cut in the morning. It is very cute. We just took a little off the bottom, it's not chopped or anything. Then she got wired up for an ambulatory EEG. It took a long time to get the 25 electrodes placed. Instead of just a little puddy to hold them in place they had to use some serious glue. This stuff was like concrete. After they placed the nodes they wrapped her head. Those nodes were not coming off. We decorated it for her when we got home. We said it was her princess crown. There was a box attached to the wires. For 48 hours we had to push a button and keep a log for every event (diapers, repositioning, deep suctioning, medicine, etc). It was a long 48 hours. Casey did do a bunch of the crunches they were looking for - which was good.

On Wednesday (still with EEG on head) Casey met a new doctor. We have been taking Casey to the wound clinic for her ear since July. We asked them about prevention for future break down and they referred us to Dr. Smith. On Wednesday we got to spend a little time with her. I really liked her. She had a few ideas for Casey's ear (she is following up with the wound clinic) then talked to us about prevention. She also gave us some stretches to do with Casey to help prevent her barrel chest from getting worse. She suggested cranio at one point. I was happy to tell her I was already working on that. She is going to talk with the wound clinic and some other people and get back to us on some ideas for Casey.

Last Thursday Casey had PT, then had wound clinic then we went to get the EEG removed. The EEG techs were running behind. Casey was ready to get the stuff off, as were the rest of us. Casey's nurse decided she was going to just help Casey out in the waiting room. I chipped in and we had all the electrodes off before the techs came back for us. They had a solution they used to get some of the glue out, then we took Casey home for a serious hair washing. I was still picking out glue all last weekend.

Last Friday Casey had her 6 month follow-up with Palliative Care. We had not been in to see them since January. There was a lot of updates for them. Overall the appointment went very well. I like seeing them as outpatients. Then on Friday afternoon Casey had Music therapy.

This week has been nice and quiet. Casey has had her therapies, but no doctor appointments. It feels as though we have been going nonstop for months now. We have a couple quiet weeks in which I plan to catch up on paper work, get some rest, maybe even work out :)

We did have to talk to a few doctors this week. Casey's neuro called to tell us that the tests were inconclusive. We need to try and catch Casey doing her crunch on video so the doctor can get a better idea of what's going on.

We also had to talk with pulmonary this week. Casey's voice was really hoarse. We noticed on Monday and it wasn't getting any better. We were racking our brains to figure out what was going on - allergies, strain, a cold. Nothing seemed to fit. Finally we figured it out. A medication Casey takes every other 28 days started on Friday. One of it's side affects is a hoarse voice. Online it said it was a less severe affect, but to call your doctor. He said not to worry, it is a known side affect and to just keep giving Casey the medication. The medicine is to help fight infection in her lungs. I would assume if we called with this in July he would have told us to stop. However, this is a pretty important medication during flu season.

I think that is about it. As always, we hope everyone is well.

More Details

It feels like we have been going non-stop all month. Last week was pretty busy. Casey started the week out with a bit of a tummy bug. She came down with it on Sunday and finally late Tuesday afternoon she seemed to be getting over it.

Casey's AFOs were rubbing again and had to be readjusted. We took care of that Tuesday. The red mark we noticed over the previous weekend is still there. I hope that it goes away soon.

Casey had her 6 month follow-up with ortho last week. Overall it was okay. We are not changing anything in her treatment. However, we have noticed over the past couple of months that Casey's arms have been getting much stiffer. The doctor reviewed the x-rays they took a few weeks back and confirmed that her left elbow is dislocated. He said Casey can still bend it with out pain, but if we were to rotate the joint it would hurt her. He did not seem very surprised. He was saying that he sees that happen with joints that are hyper-extended sometimes. If it starts to bother Casey we can opt to have it surgically repaired. As long as she is not in pain and it does not limit her ability to move then surgery is a bit much.

The wound clinic has changed up Casey's ear treatment again. We were not getting the results they wanted from the previous treatments so now we are on an Iodine based treatment. We have to leave it on for a week. I hope that it helps. I guess we will know soon enough.

Casey had her flu shot and started music therapy last week too. It was a busy busy week. There is lots going on this week too. I will post later this week with more updates/details. Have a great week!

Sing-A-Long

Today was Casey's first official music therapy session. We went to check things out last week, but this week she was able to really participate. Casey LOVES to sing. She sang along to all kinds of songs. It was so cute. She got to play the guitar and bells too. I think she likes music therapy. She ran out of gas about 5-10 minutes before the session ended. I am sure over time she will learn to save some energy to make it through the entire time.

I had to post this picture. She was just so cute singing along today. I will try to post more later this weekend with updates from all her recent appointments.

Busy Girl

In our last post I mentioned that Casey's ear was finally getting better. I spoke too soon. It was getting better, then it took a turn for the worse. I think we are back on track now. I was hoping to post that it was healed and all is well, but sadly we are still dealing with a wound. We have our weekly checks while we are up at the hospital for therapy, then we go back to see the doctor in 2 months. Also later next week Casey has an appointment with a rehab specialist. This doctor will help us find ways to better prevent future skin break down. This may include special bedding, positioning needs, etc. I hope she can offer us some good ideas.

Casey had a good time at her Make-A-Wish wrap party a few weeks ago. Everyone was excited to see her. She LOVES to be the center of attention. When attention shifted to a presentation being done she took a nap. Don't worry, she woke up in time for everyone to tell her how glad they were that she made it. Such a silly girl :)

Last week Casey got to check out Music Therapy. I think she liked it. She was really tired. She did wake up enough to play one of her favorite songs on the guitar (with the therapists help of course). They knew all the 'Little Mermaid' songs and the 'Meatball' song. Very exciting stuff. We are working on some billing details. Hopefully we can get her in to this once a week after I get everything figured out.

This week we have a few things going on. Tomorrow we are meeting with some people from School for the Blind. We hope they can help us get hooked up with some vision and/or deaf blind services outside of school services.

Later this week Casey has her 6 month Ortho check-up. She has been getting really stiff arms/elbows. They can go over her recent xrays with us and let us know if there is anything going on.

Casey has been having issues with her AFO's again. This time her left foot is getting a rub mark. We have to go in for yet another adjustment. The pair she had made right after surgery in LA were so perfect. One fitting and they worked for 2 years. This new pair has been a mess. I am about ready to tell them to throw them out and start over.

Casey is scheduled to get her flu shot too. That is never fun. I hate taking her in for shots. Now that she has a big girl cry it is even harder than taking her in as a baby.

I think that is about it for this week. As always, we hope everyone is well.

Updates

Casey has been keeping us pretty busy lately. Between her school therapies starting back up and her usual therapies at Dell we have also been dealing with her wound, ear infection and possible seizures. There has been a lot of appointments over the past few weeks.

Casey's wound is FINALLY starting to heal. Last week we took her in and the medication she had been using got rid of the remaining bad tissue. They changed her to a new medication that promotes quicker healing. Over the weekend I already saw a big improvement. She went in yesterday for this weeks appointment and everyone was very pleased with the latest progress. I hope to finally get this healed soon. It has been an issue since the end of June. That is too long for a wound.

We had Casey on ear drops for 10 days following her ENT appointment on the 24th. A couple of days after the drops her ear was no longer draining at all. We took her in for a follow-up yesterday and the infection is all cleared up. They did have to clean out her ears (she hates that part). She got a sticker and fell asleep on the way home.

Casey had her yearly EEG done back in May. There was a lot of activity and Casey was doing this weird twitching. The doctor changed her seizure medications and the twitching is under control now. However, now Casey is doing this weird thing where she tucks her head and stresses her entire upper body. I think it is pain from teething, or possibly her trying to clear drool in her swollen pallet. It is possible that it is a seizure though. To be safe we have talked with her doctor about it. Unlike the twitches there is no pattern to this so we can not predict it and catch it on video. Instead the doctor ordered a home EEG to run over 24-36 hours. We do not have that scheduled yet but they expect it to occur before October. If that test does not capture the head tuck then the next step would be an overnight stay in the EEG lab at the hospital. We hope the home test is enough.

Casey has been adjusting to her school schedule. The therapists all start coming out last week. It makes for a busy week. I am supposed to check out the schools they mentioned in her ARD on Friday over lunch. Hopefully Tim will be able to go with me. We will see.

Casey was invited to a Make-A-Wish "60 Days, 60 Wishes" wrap party on Friday evening. That should be fun. She will get to see her new friends from MAW, US Money Reserve and KVUE. Later this month she gets to go to a PICU reunion party too. Casey loves a good party.

That's about it for now. We will post more after we get some details on school and what we want/plan to do moving forward. As always, we hope everyone is doing well.

ARD and More

So the ARD on Wednesday went. It was not good, nor bad, it just went. We are not at a point that I can say we have resolution yet. The district is setting up a medical evaluation with their head nurse as well as some of Casey's doctors and therapists. This will tell the district in more detail just how medically fragile Casey is.

While we are waiting on them to set up and complete the eval they have asked us to check out a few schools in the district. They have a couple of campuses that they use for their more involved kids. I don't know if it is really medically fragile or not though. I agreed to go check them out with an open mind. I am hoping Tim can go with me since it will be over lunch. We will just have to see how his meetings look that day.

Instead of keeping Casey in a holding state, they did go ahead and resume homebound services. She started on Friday afternoon with PT and the rest will start this week. I hope to have this all resolved by the end of September. I have no idea if that is a realistic hope or not. I guess I will find out soon.

Last weekend I noticed Casey had some drainage out of her left ear. We took her in to see her ENT on Tuesday. Sure enough, she has an ear infection. That poor ear. It is the one with the cholesteoma, the wound and now the infection. She has been getting drops since Tuesday. It seems to be a little better. We will take her back in next week to get it rechecked.

We added a new section to the site Downloads. There is a full description on the page so I won't go into details here. If you are interested, check it out.

That's about it for now. Casey has a busy week adjusting to her additional home services. As always, have a great week!

School

I met with Casey's school last week to talk about getting Casey transfered to a Special School. The person that I spoke with agreed that it would be a good idea for Casey. When she went to start the process she was told we have to have an official ARD. On Wednesday I will meet with her again, as well as many other people involved in the school and Casey's care to have the ARD.

Tim and I have done a lot of research and talked with other parents and professionals in the area. Most schools do not offer classrooms designs for kids as medically fragile/complicated as Casey. There are a couple in the area that do however. So far everyone that I have spoke with has agreed that Casey should transfer. However, until Wednesday morning I will not fully know what all is involved in this process.

Currently Casey gets her school services (PT, OT, Speech and Vision) at home. We found out just a few weeks ago that half of her therapists are no longer with the district. We figured this was as good as any time to start working on the transfer.

I will let you all know how it goes and what we can expect as soon as we get more details. For other parents out there looking to do the same type of thing, I will post more details on the entire process when I get a little further into things.

Also, on a separate note, I saw a story on-line today about Jennifer Aniston's use of the R-Word. I try not to make a huge deal out this, but truthfully it is offensive. Casey doesn't know the word, and I hope that she never hears it in a derogatory way. It breaks my heart to think that one day she may and the hurt that she will feel with that word. I think we all need to make a conscious effort to stop using this word in that way. I know no one would want to hurt Casey's feelings (or any other special kid out there). Our words are powerful - we just need to keep that in mind.

Updates

This week has been pretty busy. We did get a lot done though. Casey had a good GI appointment on Monday. Since she was sick we have had to go every 2-3 months to GI. After this appointment that doctor felt that Casey has stabilized and we can go back to our 6 month schedule. That was good news.

On Wednesday Casey met with a new neurologist to get his take on Phenol, Botox, etc. Since the Phenol injects into the nerve instead of muscle he was saying it can be a little tricky. He does not like to do them in his office, but rather in OR under sedation. That's a big deal. We do not find many things anesthesia worthy with Casey. The risk is so big. He understood our concerns and is going to try something else. We are going to go to his office and he is going to inject a Lidocain Block. The results will not last long. We should be able to get a realistic expectation of how she will react with the Phenol from this test. Then I think we can properly determine if the risk with sedation is worth it or not.

The doctor also suggested getting Casey some acupuncture. When we were in LA she went weekly to get Craniosacral Therapy. The therapist would often do a needle or two as well. Casey loved getting these treatments. I had not found a good person to take her to here that also takes insurance. We are going to try a guy next week that was recommended. If Casey likes it we may try to set up a regular session for her.

I met with Casey's school yesterday. Half of her therapists have left the district and so Tim and I took some time to do a little research. There are a few schools in the area that have good reputations with special needs. There are fewer however, that deal with severe complications and fragile students. We are working with her current school to see about getting Casey transferred into one of the medically fragile campuses. We are just getting started on what we expect to be a pretty complicated process. As we get details I will post more.

Have a great weekend, and fun Friday the 13th!

Updates

Casey is still taking Flounder with her (and Elly) everywhere she goes. I am not sure if it is because he is yellow, a fish, or from her wish. What ever it is, she loves him.

We have been pretty busy around here. Casey's ear is still not recovered so we have weekly appointments to have it checked. Some days it looks better, some days worse. Eventually we will get it to heal.

We are trying to get in to see a specialist about long term prevention for stuff like this. We will talk to her about special beds, pillows, etc. She is pretty busy so it looks like it will be out in November for that appointment.

We have had to go back a few times to get Casey's AFOs adjusted. The right one seems good now, but I think we may need to go in one more time for the left. It's close, but still a little to tight and pinches her ankle.

Casey has been having a hard time with her teething. She is so drooly and fussy. We have been giving her Tylenol and Orajel around the clock. It helps, but we will be so glad when her teeth finally settle.

This week Casey is going to see a new doctor. They have a speciality clinic and there is a doctor that does Phenol Injections . Phenol is sometimes injected near a nerve in order to temporarily (up to a year) stop it from transmitting impulses. We are going to talk to this specialist to see if he thinks it may help Casey. It is hard to say with Casey if her stiffness is due to short muscles, or neurological misfires. I suspect it is a bit of both. Depending on what he thinks, and what is involved in the procedure, we may look at doing this in the near future.

Casey has routine pulmonary and neuro follow-ups in the next few weeks. We should be just about off of Casey's old seizure med by her neuro appointment. She is on a new one that seems to be doing the job. So as long as she continues to tolerate the ween she will be done with the other one soon. I am not sure if they will want to do another EEG or anything when she is off. I guess it just depends on how the appointment goes.

We are also dealing with some school stuff now. We are going to have a meeting in the upcoming weeks. Once we get through that meeting I will post more details on the issues and how we are going to deal with it.

That's about it. We hope everyone is doing well. I will post more later about the phenol options and school.