Casey is on the News

Today KVUE aired the footage shot from Casey's Make-A-Wish trip to the movies. If you missed it live you can see it here or on KVUE's site under "Community".

Thanks again to everyone who made this possible for Casey. Also thanks to all her friends and family that came to share the moment with her.

Casey's Wish

What a wonderful day!!! Casey got her wish this afternoon. Make-A-Wish, the US Money Reserve and KVUE teamed up to host '60 Wishes in 60 Days'. Casey was one of the 60. Her wish came true today when she went to the movies. She got to see Despicable Me. It was so cute.

The movie was shown at Gold Class Cinema. The theaters are top notch. All the chairs are big and recline. They serve great food. It is the first class of movie theaters. The theaters are smaller (only 40 seats), but the movie experience is amazing.

Before the movie they lounge was decorated in all of Casey's favorite things. She LOVES Nemo. There were fish decorations all over. There were lots of balloons too. Another thing Casey really likes. They passed delicious appetizers and drinks while everyone visited. KVUE did some interviews and got lots of shots of Casey's friends and family enjoying the day. Casey got a bunch of presents, and stuffed animals. She is curled up in bed with a stuffed 'Flounder' now.

There was a wonderful cake made to look like the turtles from 'Nemo'. Not only did the cake look amazing, but it tasted so good!

After the party everyone made their way to the theater. Casey had her bean bag propped up in a chair so she could see everything and sit comfortably just like at home. There were a few previews that were not animated. She did not care much for them. Once the movie started she was in heaven. She watched very closely and seemed to have a great time.

The theater served lunch while we watched the movie. After lunch they brought around dessert (including the cake I mentioned above). The food and service were outstanding.

After the movie Casey said bye to all of her guest and we made our way home. She brought home lots of the cool fish decorations. She will tell me where to hang them all this week. When we got home Casey started telling her stuffed animals and fish all about her day. When she comes home and talks like that you know she had a fabulous time.

Thank you so much to Make-A-Wish, US Money Reserve, KVUE and Gold Class. Everyone did such a great job. We will never forget today or the joy that it brought to Casey. Also thank you to all of our family and friends that joined us. It means so much to us that so many of you came to share Casey's day.

We will post a link later this week to KVUE's coverage of the event. We will also get some pictures uploaded.

Updates

Last week we had a lot going on. Casey had her mouth checked again. The dentist said she could see some teeth cutting in. This is VERY good news. As much as we hate that Casey is having a hard time teething, at least it is just teeth. The dentist made sure there is no growths or infections or anything to cause alarm. We can handle teeth.

Casey also had an ENT appointment. Her ear is stable. We get it checked and cleaned out every few months since the cholestemoa. As for now, we just continue what we have been doing - keep it dry, keep it clean and come in every couple of months. Casey hates to have the doctor clean out her ear. He gets way in there and suctions out the gunk. I think we can deal with her being upset a few minutes every couple of months versus putting her through a huge surgery.

Casey had her AFO's redone. It was really funny. The tech tried on the shoes and Casey would yell at her. She then went and made adjustments and tried again. Each try Casey would yell. She did this 4-5 times. Then all of a sudden she must have gotten it. She put them on and Casey was like, "Oh, okay, these work." She has gotten very good at making sure people know when she is and is not happy. It's amazing how much she can say without being able to actually use words.

We are still having a hard time getting Casey's wound on her ear to heal. She saw the wound nurse again this week. They have us trying a new ointment. We go back again next week to see the doctor. The good news is that it does not seem to be getting worse.

Casey's water therapist asked her to come up today for a demo. There was a group of therapists that were learning how to use the pool. Casey loves to be the center of attention. A second trip the pool in one week, and an audience; she was loving it. She got to show off all her moves. She rolls, walks on the bottom, holds her head up, all kinds of good stuff. The trip to the pool was a reward in itself, but when she was done she got a present too. The therapists gave her a really sweet thank card and some water toys. When she came home and got her bath she had to check out all the new toys. Casey had a very good day today.

Busy, Busy, Busy

It feels like so much has happened since my last post. Casey has been crazy busy.

Our biggest news is that Casey is getting her wish VERY soon. Most of her family and friends will be able to join her. It is going to be such a great day for her. Check back in the next couple of weeks to see pictures and details.

The feeder seat that we have been waiting on, expected in August, came in early. We have been trying to get Casey up in it as much as she will tolerate. She seems to be doing pretty good with it. She likes to put the table next to her and prop up her little art station. It's nice because it is tall enough that as she writes/draws (with help) she can see what she is doing. We also adapted her Little Room to work with the new seat. She always fell asleep in the Little Room when she would lay in it. Now that she is sitting up instead she is much more alert. She spent a good 20-30 minutes in it the other day. She kept trying to head butt some of the objects hanging around her. She is such a goof ball sometimes.

Casey has still been having some issues with her ear. It is not worse, it just doesn't seem to want to heal. She saw a wound nurse a few times, then last week she went to a special wound clinic where she saw a plastic surgeon as well. The plan is to keep her off of it as much as possible then get it checked again later this week. She has another appointment with the doctor next week too. The good news is that it does not seem to be hurting her.

Her mouth is still doing some weird stuff. It appears to have slowed down, or possibly stopped closing in (swelling in). It is not getting any better yet though. We have an appointment with her dentist later this week to get it rechecked. I think the dentist was right; I think it is just some teething side affects.

Casey got her new AFO's last week. The design is a little different. I have tried really hard to make them work. They just don't. We are taking them back in later this week to have them make some adjustments. They are so tight I can't get her foot in. If I cram it in, it starts swelling up. For now she is still in her old ones. Hopefully they can get these adjusted so she can wear them soon.

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

Elephants

As most of you know, Casey LOVES elephants. As luck would have it my mom and John live next door to the head of veterinary affairs for the Houston Zoo. When my mom mentioned how much Casey loves elephants, but that we can't just take her to a zoo they decided to make some special arrangements.

The zoo opens at 9, but they allowed Casey to come in a back gate (directly in front of the elephant barn) at 8. All of the elephants were in the barn eating breakfast and doing their usual morning routines.

Casey was locked on them as soon as we got her into the barn. She was not scared at all. All of the different elephants had their own little tricks and personalities. One elephant (the tamest) dances and stands on her head. They brought this elephant out of the cage so Casey could be up close, and even pet it.

There was another elephant that painted a picture for Casey with all her favorite colors (pink, purple and yellow). We will have to find the perfect spot in her room to hang her new art work.

One elephant would trumpet (not too loudly) on command. The elephants would purr too. I had no idea they purred. It sounded like a motorcycle. One would clank on the chains and make all kinds of noise until she was the center of attention.

At the end of the barn Casey was able to meet Baylor, the baby elephant that was born in May. Baylor is too young to do any tricks yet. It was nice that he was close to eye level with Casey though. I think as cute as Baylor was, Casey seemed much more interested in the big elephants.

The Houston Zoo elephant staff went above and beyond for Casey. She had such a great time. I think (if it's possible) she may love elephants even more now. Her face was priceless. When the elephants would walk away she would lean forward to follow them.

Thank you so much to everyone that made this special trip happen. My mom and John for getting the plan started. Their neighbor Joe for coordinating all the staff. The elephant team for taking time out of their day for us. And of course Casey, for being so sweet and well behaved the entire time. That is including the trip to and from Houston.

I am sure Casey will be telling all of her friends about this for a long time. As soon as she cuddled up on the couch (where a few stuffed elephants live) she started to tell them all about it. She went on and on for quite a while before she eventually fell asleep.

Full Day

A couple weeks ago we noticed a small break down (sore) on Casey's ear. We have been treating it with some medicated ointment, but it just won't heal. Over the past couple of days it has seemed a bit swollen and purple. We took Casey in to see her pediatrician yesterday. She started her on some antibiotics and a stronger ointment.

Last night after Casey's nurse put on the ointment Casey was really upset when her ear was touched. She was doing the same thing this morning after I applied the ointment. Her nurse looked up the side affects and 5% of patients experience burning and itching pain with the ointment. UGH!!! One more thing to add to our allergy/do not use list.

We have an appointment tomorrow morning with the wound care clinic. We will tell them what is happening with this ointment and hopefully they can come up something else. I hope with the antibiotic and what ever wound care offers up that we can get this ear healed once and for all.

Today was a super busy day. Casey was so great ALL day. We left the house at 8AM and did not get back until almost 3.

We started the day with getting fitted for new AFOs. Casey picked a heart design this time. They are very cute. She wanted neon yellow, but we talked her into her second choice. I think the yellow would have gotten old, and grungy quick.

After AFO's we went to GI to get an official weigh in. The new food seems to be working. Casey is up to 28 pounds. This is wonderful news. That was after 3 poopy diapers too. We are very excited about the weight gain.

After we got weighed we went to see the dentist. Casey's pallet has always been high. But it was also wide enough to get in to clean it thoroughly. Over the past 3 weeks or so it has gone from about the width of a average woman's thumb to being so tightly closed that we can not even get a QTip in to clean. We were not sure if it was growing together or if the sides were getting thicker. Either way it was concerning. The change was rapid, and the pallet was still high. Not only were we concerned about the change, but we are no longer able to clean it properly so there is risk for infection and who knows what else. The dentist took a look and had Casey get a panoramic X-ray. She had never had her teeth X-rayed at all. I was shocked at how well she did. She did not fuss or move at all. We got her positioned and she sat perfectly still. Everyone there was very proud of her.

After the dentist took a look she called in a second opinion from the cranio facial plastic surgeon in the office. They work together with an orthodontist to treat cleft, and all kinds of pallet issues. I love this dentist. She sees ONLY special needs patients and is so great with Casey.

The dentist and surgeon want us to keep a close eye on things. They suspect it is caused from difficult teething. For now we have to clean it as best as we can and give her warm compresses when it is bothering her. We will go back in 2 weeks for them to compare the growth and check the gums for potential cutting of teeth. If that is all that is going on they expect her mouth/gums to go back to the before size. We are keeping our fingers crossed that this goes well.

After the dentist we went to the hospital. We had a quick lunch (with lots of Casey's hospital friends coming by to say hello) then went over for water therapy. Casey did great in the pool today. She did great all day. She hardly fussed at all, she was so good in her chair, we did not even have to suction much today.

After water therapy we had to stop by neurology really quick. Casey has been twitching a little again so we had to get them to review her seizure meds some more. They made a quick change and sent us on home.

We got home then Casey had to have a bath (wash of all the pool). She is wiped out. I expect someone is going to sleep good tonight. I think I probably will too.

We have a really fun weekend planned. Casey is going to meet a baby elephant! Some big elephants too. We will take lots of pictures and post details when we get back. We hope everyone is well and has a wonderful weekend!