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ARD and More

Author: Marty
Date: Sunday 29th of August 2010 08:31:00 AM

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

Author: Marty
Date: Friday 20th of August 2010 01:13:00 PM

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

Author: Marty
Date: Friday 13th of August 2010 08:57:00 AM

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

Author: Marty
Date: Tuesday 10th of August 2010 09:11:00 AM

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.

Casey is on the News

Author: Marty
Date: Friday 30th of July 2010 01:26:00 PM

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

Author: Marty
Date: Monday 26th of July 2010 08:45:00 PM

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

Author: Marty
Date: Saturday 24th of July 2010 05:57:00 PM

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

Author: Marty
Date: Wednesday 21st of July 2010 06:49:00 AM

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

Author: Marty
Date: Monday 12th of July 2010 04:24:00 PM

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

Author: Marty
Date: Thursday 08th of July 2010 05:24:00 PM

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!

Food & Diapers

Author: Marty
Date: Monday 28th of June 2010 09:24:00 AM

Casey has been feeling much better. She was back to causing trouble all last week. There is not a lot to report. She is still working on few play dates.

Last week we were able to get Casey back on Nutren Jr. She was on this food for over a year, but when she got sick back in November they changed her to Nutramigen. The Nutren is so much better. Her tube still leaks, but it does not seem to be quite as bad. I hope that on the new food that we will be able to finally get some weight back on.

We also changed diapers last week. We had been on Pampers forever, then around her 4th birthday we started to get diaper supplies through a company that provided Huggies. The Huggies were fine but when this months order arrived it was not what we expected. I called the company right away to be sure there was not some sort of mix up. They were not able to renew the Huggies contract and had signed on with Cuties. The person I spoke with explained a lot of testing and quality control that they had worked out in previous weeks. I had to agree, on touch the Cuties felt soft and looked fine. When we tried them out they seem to fit really well too. All in all the Cuties brand seems to be pretty good. We have only used them for a few days so far. I think as long as we never have to go back to the awful Curity diapers we should be fine.

I think that is about it for now. Hopefully we will be able to work in some fun stuff over the next few weeks. We hope to have some updates on Make-A-Wish soon too. Until then, we hope everyone is well.

Miller - So Much More Than a Dog

Author: Marty
Date: Wednesday 23rd of June 2010 08:05:00 AM

15 years ago, while still living with my parents, I brought home a little white toy poodle. The second I saw her I knew I had to take her home with me. It probably would have been best to get permission to bring home a dog, but I took the risk. After about 10 minutes with her my whole family agreed that she belonged with us.

Miller was so full of life. She loved to go for car rides. Anything with water made her happy. She used to find the plants that my mom recently watered and play with the run off water until she managed to splash it all out on the floor. Her favorite thing though was playing ball. She could play ball all day. We never even taught her, she just did it. She would bring the ball back and drop it right in front of you. If you told her "I can't reach it" she would get it and move it closer or even put it in your lap. If you still did not throw it for her she would bark at you until you did.

I used to come home from work and she would great me by dropping the ball down the stairs as I was coming in and up. Miller was one of kind. Everyone that knew her loved her. Even people that don't like dogs could not help but love Miller.

When Miller was about 5 I started working a lot and felt that she was not getting enough attention. After thinking long and hard I knew the best thing I could do would be to give her to my mom. My mom always loved Miller. She had more time than I did and I knew Miller would get the love and attention that she deserved.

It was sad, and I missed her like crazy but I knew I made the right decision. Over the past 10 years my mom and Miller have been inseparable. Miller was less like my mom's dog and more like her side kick or little furry shadow.

My mom took Miller sailing with her often. Some of Miller's favorite times were spent on the boat with my mom. She even had her own little life jacket for rough waters.

My entire family has loved Miller since she joined us 15 years ago. She was so much more than a dog to all of us. There will never be another Miller.

Today Miller went in for dental surgery. She made it through the surgery, but passed away earlier this evening. She went quick and did not suffer. My mom was with her so she was not alone.

We will all miss Miller very much. I can't imagine life with out her. The 15 years she was here with us will always be treasured. Miller, we will never forget you. You will be with us always. I hope you are somewhere playing ball now. Good bye, Miller. Thanks for all of the wonderful memories.

Long Week

Author: Marty
Date: Thursday 17th of June 2010 10:11:00 AM

Casey has had a rough week. She get a nasty stomach bug last week. Just as she was getting over that she got an eye infection. She is still on drops for her eye, but it looks much better. I think she is feeling better.

There are a few things we have been working on that have updates. The feeder seat I already mentioned is back ordered. As of now we have an ETA of August. The speech therapy we are waiting on we were told will also be August. School will be starting back up in August too. I think August may be a bit busy around here. Good busy, but busy. Depending on Casey's wish that may end up happening in August as well. We are hoping to hear back this month on what and when she will be doing for her wish. I am sure what ever it is it will be great.

That's about it for now. We hope everyone is doing well.

Fun Day

Author: Marty
Date: Tuesday 08th of June 2010 01:33:00 PM

Casey spent the morning doing one of her favorite things - movies! After lunch we got her ready for her usual afternoon therapy at Dell. We got ready a little early and decided to go up and visit some of her friends. It worked out great. She got to see lots of her nurses, CAs, RTs, and some of her doctors. They were all glad she was there "just visiting".

I have been so excited that we finally got Casey's feeder seat approved and ordered. I got a call this morning to tell me that it is back ordered and my expected arrival date is not until 8/6. They said that a few people have been getting them early, but they can not promise. I really hope that chair gets here soon. We have lots of plans for how to use it.

Casey has a friend coming over Friday. She can't wait. She loves play dates.

Latest Updates

Author: Marty
Date: Monday 07th of June 2010 07:34:00 PM

We are making some progress with Casey's seizures. They started her on Kepra last week. Apparently a lot of kids are on this drug. She has been doing pretty well with it. They started her on a fairly low dose. Her twitches were noticeably less with in a few days. They are not fully gone though so today they had us go up just a little in the dose. I think after some fine tuning we should have them back under control.

We have not talked with the doctor yet, but her nurse said that they did not find anything in the MRI. That is pretty much what we expected.

Today was a crazy day. About a month ago we found 3 scorpions in the house (2 pretty big ones) in just over a week. We had someone come out and spray and we thought things were better. Out of no where today Casey's nurse jumped up off the couch. Somehow a scorpion had crawled up her pants and then when she saw it and pushed it away it stung her. I really hate bugs. Luckily it was not too bad. She was pushing him away so he was not able really latch on (thank goodness). He ran under the couch before we could get him though.

Tim came down from his office when he heard all the commotion. Casey had been sitting on her bean bag on the floor watching a movie. We grabbed her up real quick and got her to the bedroom. After we patched up her nurse's hand and got Casey and her nurse set up in the bedroom Tim and I tore the living room apart. Finally after hunting a bit we found him. He was a big one too.

We are working on getting Casey into a few extra therapies up at Dell over the summer so she does not regress. Hopefully we can get some stuff set up in the next couple of weeks. She should be getting a new feeder seat soon to use at home.

We are setting up as many fun activities over the summer as we can (play dates, swimming, movies, etc). The pictures I posted are from one of Casey's PT workout up at Dell. They were just too cute not to share.

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

Between the Lines

Author: Marty
Date: Thursday 03rd of June 2010 04:13:00 PM

We understand there are a few misconceptions based on the content we post. I want to take a minute to clear up a few things.

First I would like to explain how this content makes it to the site. From day one Tim and I decided that the only way we were going to be able to get through this is to focus on the positives. Some days are a lot harder than others. We are more than aware of the severity of the situation - and not delusional in any way. Instead of dwelling on every setback, bump, hurdle, or whatever you choose to call it, we decided that we would acknowledge the challenge then move forward. We have put all of our energy into celebrating EVERY victory, no matter how small. We cherish each moment we get to share with Casey. When we post to this site you have to keep that in mind.

In life with a special needs child there are always challenges. If you think of life as a road you can say that life with a special needs child would be full of bumps, potholes, hills and mountains. That road may not even be paved. Life with a healthy child is more like a major freeway. Smooth with a few potholes, hills and maybe even a mountain or two. When driving down a freeway, if you hit a bump or pothole you notice it. When driving down a dirt road there are so many bumps and potholes you probably start to just drive through them, and only notice when you hit a really bad patch. Sure, when you get to your destination you are aware that you traveled a bumpy road. But you travel it so often that when you are asked how the trip was all you can think to say is "Fine, nothing eventful." Or you may even go the other direction, as we often do, and point out the positives. "Great, the weather was nice. We were even able to tune into our favorite radio station most of the way." If we don't spend time talking about the bumps, it does not mean that the road was paved and smooth. You might say we have been off road for most of our travels.

When we were in the NICU with Casey (back in the very beginning), Tim and I really had no choice other than to adopt the positive approach. The doctors actually pulled me aside and where legitimately concerned that I was delusional for being so positive. I explained to them, the same as I am explaining to you all now, if I can't hold on to the positives, I won't make it. I had to explain to them that yes I know my child is very sick. I had to explain to them that I know I could (and still can) lose her at any moment on any day. I had to explain that I know that my daughter will only get worse over time. And I had to tell them when the time comes I will somehow recognize it and accept it. These were not things I wanted to say, but this was/is our reality. I know it, and Tim knows it. But we don't want to waste the time we have with Casey dwelling on those things. We want to make every moment count and as wonderful and positive for Casey as we possibly can.

Just as we focus on enjoying and celebrating life with Casey, we want others to do the same. We don't want people to hear her story and feel sad or pity for her or us, or "glad they aren't us" (yes, that's a quote). We want people to hear about her and feel proud, and lucky to know her. We want people to see her for the amazing fighter that she is. And we want people to see all of her achievements and help her celebrate them.

I know sometimes reading this site you may get the impression that Casey is doing great. And she IS, but it's all relative. Maybe I should have posted this explanation earlier. We hold hope that she has a long and wonderful life. We feel so incredibly blessed to have her in our lives. She is the most amazing person I have ever known. Our hope is that everyone in her life knows how lucky they are to be part of her amazing journey.

Also, I need to explain Make-A-Wish. We were approached about Make-A-Wish, we did not go looking for them. The medical field has come so far that a lot of families do not get "you have exactly this much time" anymore. Some do, but many are labeled with "Life Limiting" instead of "Terminal". Make-A-Wish supports both types of cases. To be part of Make-A-Wish, a child's doctor sends medical details showing the child is in one of these categories.

Life limiting is a term most people may not know. I am breaking all of our rules to actually go into this right now. "Life limiting" or "medically fragile" or "complex chronic illnesses" are terms that are often used with severe cases. These are terms that are used when discussing patients with consistently deteriorating medical conditions. What does this mean? Well, in short it means that every day Casey is getting worse, and both her quality and quantity of life is limited by her conditions.

We focus on the positives, and we post the positives. If you read closely (between the lines) you will see the positives are things like personality (likes, attitude, etc), learning (switches, cries, gestures/decisions, etc), and minor medical (got over a cold w/o hospitalization, avoided aspiration during MRI, etc). The major conditions - the areas that we and the current medical community have no control over - are getting worse. I don't want to get into a lot of details here (I can't), but I will try to explain this a little.

Each time Casey is sick, each time she is hospitalized, even when she grows, she gets worse. Her pulmonary, GI and physical development are deteriorating (sometimes slowly, sometimes quickly) and there is nothing we can do to stop them. Even when she gets out of the hospital or gets over a specific illness, she is not able to quite make it all the way back to where she was before. Eventually she will no longer be able to breath and/or eat. Every time we go to a doctor appointment they point out to me that she is worse than the time before. I don't post those details. When I say an appointment went well, it means the doctor did not push to admit Casey to the hospital or hospice care. It means that Casey is doing as well as can be expected for her condition.

If Casey's doctors did not think that she was in the high risk category she would not be eligible for Make-A-Wish. If they thought she had lots of time they would have waited. Make-A-Wish knows that their kids have good and bad times. When a child gets into the program they move as fast as they can, because they want the child to be in a "good time" in order to fully enjoy their wish. Also, regardless of life limiting or terminal, the truth is that any of these kids can go at anytime. That is not the plan, but it is a real risk and Make-A-Wish knows this. For everyone that has been reading Casey's blog and is confused "I thought she was doing great, why is she getting a wish?", I hope this helps explain that.

We are so thankful to have so many people follow Casey's story. There are more people pulling for her in good and bad times than we could have ever hoped for or imagined. We are sorry if our postings have mislead any of you. I hope that with this explanation you can understand where we are coming from.

Busy Week

Author: Marty
Date: Saturday 29th of May 2010 12:58:00 PM


Last week was a busy one. Two of Casey's four day nurses are changing their schedules for the summer. Her Monday nurse's last day with us was this week. She is going to cut her hours back over the summer to spend some time with her kids. Casey's Tuesday and Wednesday nurse also finished this week. She is going to be in school full time over the summer. It worked out really well though. Casey's Friday nurse has been working as a NICU nurse in Temple. She just finished up there and has decided to enjoy her weekends and evening over the summer. She is going to take most of our open shifts. Then at the end of the summer she is planning on taking a local NICU job. I hope that it works out so that Casey's previous nurses are ready to come back at the same time.

On Wednesday Casey had an appointment with pulmonary. It went well. It was just a check up. There are no changes to Casey's pulmonary plan for now.

On Thursday Casey had her MRI. I was a nervous wreck. The last one went so bad so fast. I called and went up to the facility before hand to make sure they were ready for all of Casey's needs. I was really happy with how it went. They let me lay on the table with Casey. When she would start to get junky they would stop the machine and get her out right away for suctioning. Casey did great. There was one sound she did not like much. She did not get upset really at all. I was very proud of her. What a big girl :) They had to do contrast, which means she had to have an IV. That went well too. They brought in all the tools and were able to get it on the first poke.

Casey's vision teacher made some Power Point books for her. We have a little attachment that allows up to plug her switch into the computer. She loved it. She was able to change the slides all by herself.

Casey's twitching did not resolve at all with the increase in her seizure medication. Her doctor called in a new drug to try on Friday. We will give this new drug a couple of weeks and see how she does. I am guessing once the twitching gets under control we will need to set up another EEG. Our goals for the summer are to work on feeding issues (total volume, rate, leaks, etc) and to get the seizures under control. Of course, we will have to get as many trips to the pool in this summer too.

I will post more soon with updates on the seizures. We hope everyone is doing well.

Site Updates!!!!

Author: Marty
Date: Monday 24th of May 2010 09:31:00 AM

Check out the new Reviews section. We have also updated our Photos section.

The "Reviews" section has all of our current items (and some old). As we get new stuff we will be sure to add them. We have grouped them easier page navigation. We list out pros, cons, cost, and any our opinions on the products. We hope this is useful for other parents. We also indicate if an item is typically covered or not.

The "Photos" section is no longer a static page. Instead of the dozen pictures we had there before it will now randomly display a selection of old and new photos. Each time the page is refreshed the photos will change.

No More Ear Infection

Author: Marty
Date: Wednesday 19th of May 2010 01:27:00 PM

We just got home from Casey's ENT. He was very happy with her ear. The infection has cleared up nicely. He said that over all she is doing great. The cholesteoma is stable and the right ear is still doing well with out a tube. We have to stay on top of it (every 2-3 months we have to go back). I would much rather drag her up there every few months than put her through a huge surgery.

We sort of have Casey's MRI scheduled. We are going to go up the morning of 5/27. We went back and forth a few times on where. One place said it was either full under (intubation, etc) or no sedation. Because of her age they said no sedation is not an option for her. We found another place that would do light sedation. However after I talked with them about all of Casey's needs and all that good stuff they did not think light sedation was safe for her. I told them full sedation is not an option. The test is not worth that risk. The only other option is no sedation. They agreed to try it. We will head up there next Thursday and see how it goes. I plan to give her a little something before we head of so she may sleep. I just can't count on that though. If it does not work out then I guess we just won't get an MRI. There are other ways they can see her brain. The image may not be exactly what they want. If that is all we can do though, they will have to just figure it out.

We are very close to having the site updates/modifications ready to go. Check back in the next few days and hopefully they will be live. Until then, have a great rest of the week!

Updates

Author: Marty
Date: Sunday 16th of May 2010 05:28:00 PM

On May 3rd Casey went in for her 4 year appointment. This was her first full appointment with our new pediatrician. It went well. Casey got 3 out of 4 of her vaccines. We opted not to get the chicken pox vaccine. Last time she had a really bad reaction. She did get her DTap, MMR, and Polio shots. She was such a trooper. She got a cool sticker on her way out for being a big girl.

Casey had her first teeth cleaning on May 5th. She is so funny. I think she is the only kid I know that loves going to the dentist. She had a great time. She has always likes oral stimulation. The dentist and Casey got along great.

Casey finished up her ear drops last Wednesday. Her ear is looking much better. There has not been any more drainage. It smells much better too. I think her ear has healed up well. We go back to her doctor this Wednesday. I am pretty sure he will be happy with the result. He gave us plenty of refills on the drops. Next time she starts to drain a lot we can start the drops right away.

On Monday Casey went in for her annual EEG. We noticed around the holidays (when she got sick) that Casey started twitching. She seemed to twitch with dirty diapers mostly. Over the past few months the twitches went from BM's, to all diapers, and now she is also doing it for no apparent reason. They are not violent, or full on seizures; just odd. During Casey's EEG she did twitch a bit. This is kind of good. They were able to capture it on the test. They also recorded video so that the doctor could see what Casey was doing.

On Tuesday we went back to see the neurologist. She said that not only during the twitches, but through out the entire test she saw a lot of activity. The past 2 years Casey's EEGs were getting better. The doctor increased Casey's current seizure medication. We are watching her for 2 weeks. Then if we do not see any improvement we may try a new medication. We are going to schedule an MRI as well. Casey has not had an MRI since she was about 10 months old. I don't expect them to find anything. It is not a bad idea to check though.

Casey is finishing up her school therapies this month. We may add an extra session at Dell over the summer just to keep her progression on track. We have a couple routine doctor appointment coming up this month and next. Casey has been busy so far in 2010. We can't believe it is already mid May.

We have some family coming in town this weekend for all of the May and June holidays and birthdays. I am sure Casey will have a great time. She loves visitors. I think her pal/cousin Riley will be coming too. She and Riley always have lots of fun together.

I think that is about it for now. Tim and I are working on some new features for the site, as well as some improvements on others. Check back soon. We hope to have them in place soon. As always we hope you are all doing well.

Pictures

Author: Marty
Date: Sunday 02nd of May 2010 03:59:00 PM

Here are some pictures I have been promising...

Casey at her Make-A-Wish interview

Casey's birthday party

Bathroom before

Bathroom after

Fun Week

Author: Marty
Date: Friday 30th of April 2010 06:10:00 PM

We had a great week. We finally took our first family vacation. We have gone away for a night or two here and there over the past 4 years. However all of our previous trips were medical related. This week we took a trip just for fun.

We took Casey to San Antonio after work on Wednesday. We checked in to the hotel and had a nice relaxing night. Then Thursday morning we got up and got ready for a day of fun. We took Casey to Morgan's Wonderland. What a great place!

Casey had a great time. She LOVED the water area. She was able to go to a light show, design her own car, she hung out on the playground with other kids, and she ever rode on a carousel. We were on the dragon. We said hello to the elephant on our way off the ride. Casey's friend, Kennady, met us there with her parents. It was a really fun day for everyone. Casey played so hard she crashed. We will have to plan another day trip out there sometime soon.

The ride home went pretty good. Casey was awake most of the way, but not too fussy. However about 10 minutes before we got to Austin she let us know she was ready to get out of the car. The way down was similar. She slept most of the way there. However, about 10 minutes before our exit she threw up. We had to pull over and clean her up. Her GTube was leaking and making a horrible mess (even worse than usual). When we finally made it to the room we gave Casey her medicine and saw that her tube was still leaking really bad. She was exhausted from a long day and crashed so we just positioned her as well as possible to reduce the leak.

In the morning when we were getting ready Casey's tube came out. Surprise! The balloon had deflated/popped. I am guessing that was when her tummy got sick and made her throw up. Then over night the remaining water in the balloon drained out. Luckily we had our extra gtube and popped it right in. That explained the increased leaks. Her gtube has been doing much better since we changed it.

On Wednesday morning Casey had to go to the ENT. Her regular ear cleaning appointment was due and her ear had been draining a lot. The doctor checked it out and cleaned it really good. It turned out that Casey had a bit of an ear infection. We have been giving her drops for a few days now. We have to give her drops twice a day for a week then once a day for another week. After that we will go back to get another look. I have already noticed a lot less drainage. I think the drops are helping.

Casey has a couple of appointments over the next few weeks. I will try to post again soon. I will also post some birthday pictures when I get them. As always we hope everyone is well.

Birthday Girl

Author: Marty
Date: Friday 30th of April 2010 06:09:00 PM

Casey turned 4 on Friday. I can not believe she is already 4. The years have really flown by. She had a great birthday. On Friday I told her it was her birthday so she could do what she wanted. She took that very literal. She opted to sleep in. When her nurse tried to get her dressed and ready for therapy she threw a little fit. It was as if she was saying "My mom said I could do what I want! Leave me alone!".

On Saturday we had some family come over to do a little birthday party and lunch here at the house. She had some raspberry cheesecake ice cream cake (yummy) and a nice time with her party guests. She has finally gotten big enough to understand presents. She was so excited opening her presents.

After her party we took her to her Make-A-Wish interview. Casey is officially going to be a wish kid. We told them all about what she likes and doesn't like. We talked about her limitations and risks. Then we gave them a few ideas of wishes we think she would enjoy. The volunteers took all of our information. They will do some research and then let us know what and when her wish will happen. I am really excited to see how it goes. I am sure what ever they come up with will be wonderful.

I am waiting for some pictures from my mom. Once I get them I will post pictures of the party and Make-A-Wish. Thank you to everyone for all of the birthday wishes, cards and gifts. She had a really nice birthday and appreciated it all.

Whats Happening

Author: Marty
Date: Thursday 08th of April 2010 08:39:00 AM

The bathroom renovation is coming along. We had to wait a few days on the counters to be installed so the crew went home Thursday last week. The counters were installed yesterday. I LOVE them, they are so pretty. Now that they are in the crew can come back and finish up. They will be here on Monday. Today we have a drywall guy coming to texture the walls. Tomorrow and over the weekend I will paint. Tim has finished up all the inlay and back splash. When the guys come back on Monday they will have to do the shower floor, grout and seal everything and attach the fixtures. I am sure they can get all this done in a day maybe a day and half. Then the bathroom is complete!!! I am so excited. Casey's bath chair should be here in about 2 weeks now. We will make do with the non rolling chair until the new one arrives.

Tim and I have been talking about trying night nursing again off and on for a while. Since Casey has been in her room (with us) due to the renovations we figured it was as good of time as any to try it again. Tuesday night we had a nurse come out and work from 10PM to 7AM. I stayed up with her so that I could teach her what to do. Last night we changed her time to 10:30-6:30. She stayed with Casey all night so Tim and I could sleep. It went really well. Casey seems to like stretching out in her own bed. We are going to have a night nurse come Sunday through Thursday nights (work nights). I think I will be so much more productive if I can get some sleep.

We have a new day nurse starting today. She seems to be catching on to suctioning pretty quick. That's awesome! Now we have a lot of nurses. We have a Night nurse, a Monday nurse, a Tuesday & Wednesday nurse, a Thursday nurse, a Friday nurse and 2 respite nurses. 1 of the respite nurses is our Friday nurse too. We have 6 nurses working with Casey now. That is so great. I like having different ones each day. That way when one is sick, on vacation, what ever we only loose a day not a week or more. The respite nurses are not on a schedule. When the respite nurses come they are here for a couple hours so we can go on dates. We just get respite as they have time. Now that we have 2 we are able to get out at least a couple times a month.

Casey had water and OT at Dell on Tuesday. It was a LONG day. We spent the morning in the pool, came home for lunch, then went back for the afternoon. Casey was wiped out.

We have been having some issue with suction machines. Our primary portable has been going out for a while and is very unreliable. Earlier this week I went to use our backup and it was totally dead. It won't charge at all in more. We got it replaced since it is covered by insurance. However the primary one is a nicer one. Since the model we use has been discontinued we have been researching replacements. Hopefully we can find a good one in the next week or so and replace our primary machine too.

Yesterday Casey had a GI appointment. The appointment went okay. Casey has lost a little more weight. The doctor wants us to try and get her more food each day to see if we can get her going in the other direction. She didn't lose a lot, or as quickly as she did with the GJ, but she did lose. The G tube is still so leaky. I have no idea how many calories a day she must lose that way. We will work on it. We have had to do this dance many times before. I am sure we will get her back on track soon.

We don't have any more doctor appointments scheduled until after her birthday. The next few weeks will be therapy and getting ready to turn 4. We are going to have some family over for a small party then head to San Antonio to take Casey to the zoo and Morgan's. We are going to meet Kennady and her family at the park.

Crazy Days!

Author: Marty
Date: Thursday 25th of March 2010 02:04:00 PM

This week has just flown by; for that matter 2010 has flown by so far. Next week is already April!!! My baby is going to be 4.

Tim got all of the demo done in the master bath over the weekend. The crew was supposed to start Monday. They got held up on the previous job so it was delayed a little. They showed up around 5PM on Tuesday. With the bathroom in shambles and mess all around we have moved out of the master. We have all been staying in Casey's room. We went from all 3 of us being in a King to all 3 of us sleeping in a full. It's a bit cramped at night.

They have been jack hammering the drain out all afternoon yesterday and today. It is VERY noisy. Casey has been hanging out up in my office away from all the noise and mess. She seems to be adjusting okay.

On Monday Casey went to the cleft clinic. It went well. I really like the dentist. Anyone looking for a special needs pediatric dentist should check out Dr. Jacobs. She was so good with Casey and totally understood our needs and concerns. We met with the plastic surgeon as well. We did not have a lot the we needed from him so it was more just an introduction. We are going to back in a couple weeks to see just the dentist and get Casey's teeth cleaned. Then next time she has a procedure planned we will piggy back a full cleaning at the same time.

On Tuesday I had Casey's ARD. I met with her home therapists and school officials to set up a plan for next school year. There are not any real changes so the ARD was pretty quick and painless. Everyone is really happy with her progress. For now we will just stay the course.

On Wednesday Casey saw her Ortho. She was is a BAD mood! She threw a fit the entire way and while waiting. She had NO interest in sitting in her chair. As soon as we took her out she calmed down. Then when the visit was over and we had to leave (go back in the chair) she got all worked up again. It made for one very long morning. There were no surprises with the appointment. The doctor likes to keep an eye on Casey's spine and legs/feet. So for so good. He said as she gets bigger we will have to start weighing options to getting her legs bent. Mainly in order to allow her better and more seating options as she grows. For now he likes how she fits in her chair and said it is not something we need to think about just yet. He is helping us get Casey a new bath seat (with wheels). This is going to be great to use with the new shower. He is also helping us get Casey a feeder seat and some medical positioning wedges to use at home.

Last night Casey's respite nurse (Laura) came over for a bit. Tim and I were able to get out and have dinner together. It was a nice break from the renovation and crazy schedule.

Casey went swimming this afternoon (water therapy). She did really good. She was much better in her chair today too. Thank goodness. Next week we just have therapies- no extra doctor appointments for Casey. The renovation should be past the jack hammer portion soon and even though it won't be quiet it will be quieter. I think that is about it for now. As always we hope everyone is well.