Food & Diapers

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

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

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

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

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

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

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!!!!

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

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

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

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

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

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

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!

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.

Back to Normal

Things are finally settling down a bit for us. Casey has gotten through most of her doctor appointments. It seems like all of February we were just in go-go-go mode.

We went a couple weeks with just Monday and Friday nursing after we let our mid-week nurse go. Last week we started training a new nurse to cover the mid-week shifts. She worked Tuesday and Wednesday last week. This is her schedule for March then in April she will pick up Thursdays too. So far it is going well. She is getting the hang of suctioning and Casey's sounds. No one gets all of Casey's needs on the first day. She is doing well, and Casey seems to like her. Today is her first day where I try to stay near by, but let her run the show.

This is spring break week in Austin. All of Casey's home therapies are through the school so she has a pretty lite week. Her water therapist went on vacation too. The only thing on Casey's schedule all week is her OT at Dell later today. It will be the new nurses first car trip with Casey too. The car is always a big deal. Casey still HATES the car.

We have been working really hard to get the bathroom renovation started. Tim and I had to pick out and buy all the tiles, paint, fixtures, counter, sink, window, etc. We have most of it bought and the rest we are working to finish up this week. The construction crew is set to start on Monday. Tim is planning to get a head start on the demo over the weekend. I guess as soon as he starts Casey and I will move upstairs and stay out of the way until it is done.

We have set the house up so that all of Casey's stuff is downstairs. Her nurses have never even been upstairs. It is going to be a little cramped to have us all in my little bedroom/office area for a few weeks. It will all be worth it though. I can not wait until the shower is done.

Casey goes back to her busy schedule next week. All of her therapies are back in place. She has the cleft clinic on Monday (I am actually kind of excited to hear what they have to say). Again, Casey is not cleft, she just has some pallet deformities. Tuesday is her ARD (school services review). We will find out if she gets to start her "school" stuff next year or if we wait another year. Her school will still be at home. Casey's school stuff will add 4 hours a week of someone coming in working with her. For her it will be a lot like additional home therapy sessions. It will very likely be her vision teacher. Casey loves her vision teacher. Then Wednesday Casey has ortho. It is possible she will get new AFOs this year. I don't expect any big changes from the ortho clinic. They like to just check her spine and general physical development every 6 months or so.

We are planning our trip to Morgan's Wonderland. I can not wait to see Casey's face. I think she is really going to like this trip. The park officially opens on 4/10/10. Anyone out there with special needs kids (or adults) should check it out if you have not already. This park is such a great idea.

I think that is about it for now. We will post some pictures as we get the renovation going. As always, we hope everyone is well.

Updates

Casey's glasses came in last week. They were super fast. We actually got the glasses before we even got the doctor's report from the appointment. We are still working on getting them to fit her just right. As soon as we do I will get and post some pictures. They are really cute.

We decided to let our Tue-Thur nurse go. There were a couple of things that made us a little uneasy. We finally just decided it had been long enough and it was time to let her go. Our nursing company is trying to find someone to fill the shifts. Hopefully they will find us a good match. Until then we have a Monday and Friday nurse. They are both great. I wish we could clone them, either of them. Her Friday nurse just started today. Already they are getting along great.

On Monday we noticed Casey's left ear (the one with the cholestioma) was draining a lot. When we looked into the ear we saw what looked like a white fluid. I had never seen this before. Drainage is good, but it was a lot. I was a bit concerned. When I called ENT they were at lunch. After that we ended up getting pretty busy. Casey already had an appointment with ENT for Wednesday. We decided to just wait until then. She did not seem to be in pain or anything so we figured another day and half would not be a problem.

On Wednesday Casey's ENT cleaned out her ears really good. He said that the left ear had a lot of build up. The white fluid was actually moist skin. He said that the drainage we saw was probably just a part of the skin build up breaking loose and letting out some built up fluids. After he got her all cleaned out he said that the ears themselves are not bad. The left is still a concern, but it is not getting worse. We will just keep going back every couple of months and hopefully that will be plenty. He will keep an eye on her right ear too. Since the tube is out now he will keep an eye on it to determine if/when she needs another tube.

We have been able to move most of Casey's out of the house appointments to Monday or Friday for now. The few that will come up between we will figure out as we need to. This should work for a little while. I am sure PSA will be able to find us a new nurse in the next week or 2.

That is about it for now. Hopefully I will be able to post updates on a new nurse and maybe even on the bathroom remodel getting started soon. Until then, we hope that everyone is well.

Busy Month

Casey has been pretty busy this month (and still has a lot coming up).

She saw her dentist on the 2nd. That was kind of a frustrating day. We went to him because he is one of the only pediatric dentists in town that treats severely disabled kids. This was our second time to see him. His office is really nice, but out off Bee Caves. A VERY long drive. Even longer when Casey just does not want to be in the car.

Last time we saw him he was a little concerned about her teeth not all coming in yet. He wanted us to come back after Casey had had 6-9 months to grow a bit more. Many of Casey's teeth are still not breaking through. When he saw this, and took a look at her high/narrow pallet he was overwhelmed to the least. He told us he has never seen anyone like Casey and had no idea how to even begin treating her. He gave us a couple options.

1- We could drive to Houston and have her seen at Texas Children's hospital. He told us the head dentist there has seen it all and would know what to do. 2- We could take Casey to the Dental school in San Antonio. He said they may have more experience with her specific needs, but he did not have a person directly in mind. 3- We could get Casey into the Cleft Clinic here at Dell Children's. Casey does not have a cleft pallet, but if anyone in town is going to know how to approach her unique pallet concerns it would be this group.

The options were pretty simple for us. We will start here with the Cleft Clinic. The clinic takes a team approach. They will have a dentist, orthodontist and a plastic surgeon all come in and examine Casey. Then they will work together to figure out what will be best for Casey's teeth and mouth moving forward. We will be seeing this group in March. The drive is much better for us. We go over to Dell multiple times a week already so I know we can handle this. I am kind of excited to see what they can suggest for us. If they are not able to help then we will look into taking Casey to Texas Children's. That drive is just so hard on her.

Casey had GI the week after her dentist. She had lost a little more weight since her last visit. It is hard to say if she had lost since we put in the G instead of GJ though. We did not get a good before and after number. We have to take her in each week now until she starts gaining again. In addition we are trying to push her a little to eat more each day. That is much easier said than done.

On the 11th we met Casey's new pediatrician. She was really good. Dr. Legett recommended her to us. We liked our previous pediatrician. We just felt that a lot of times he was not comfortable with Casey's respiratory issues. Even on her best days he was a bit on edge. Dr. Bell is new to private practice. She did her residency at Dell Children's. She has been exposed to some of the more severe cases. Casey was actually having a really hard time while we were there and Dr. Bell did not flinch at all. I think it was time for us to make that move.

We had a new nurse come in to meet us on Friday. She was really sweet. She works full time as a NICU nurse in Temple. She just wants to pick up an extra shift a week. That worked out perfect for us. She will be here on Friday's, then we have Casey's other 2 nurses to work the rest of the week. It is nice to have 3 nurses all trained on Casey's care. That way anytime one is out we have a better chance of getting that shift covered.

Yesterday Casey went to meet a new eye doctor. Instead of taking her to an optomitrist we took her to a low vision specialist. This is the same type of doctor she saw in LA. That appointment went very well. Casey worked really hard to try and see the different images the doctor showed her. She seemed very attentive to the doctor as well. I think she really liked Dr. Miller's voice. We told them how hard it is to get Casey to wear her glasses. She lays on them and they dig into her face. They have a brand that is a soft plastic frame. It fits like a head band around the head instead of behind her ears. They are going to put some tinted frames in them to help block light a little too. They are really cute; pink of course. I expect to get them later this month or early next.

Next week Casey has an ENT appointment. Her ears have not been draining at all like they used to. I am not sure if this is good or bad. I guess we will know soon.

We are working on getting the master bathroom redone. We are killing ourselves trying to bathe Casey in our current tub. We are going to pull it out as well as the shower next to it. In their place we are going to have a much larger, accessible shower installed. Once we have that we can wheel Casey in and out much easier. Who knows, maybe she will actually grow to like bath time.

As always we hope everyone is well. We will post more soon.

Lots of Stuff

We went to see Dr. Legett on the 20th. This was our first out patient appointment with Dr. Legett. It was great for her to see Casey doing so much better. The appointment went really well. She has an order for Casey to get some stronger pain meds when she needs them. She also referred us to a new pediatrician. Casey's current pediatrician is nice, but he is scared of Casey. We will only go to him for immunizations and nothing else. We need a pediatrician that we can call when Casey needs one and we can not get right in to her specialist. I trust Dr. Legett and have very high expectations for the new doctor. Changing is kind of a pain. However, I think it is time.

Tim and I had a date on the 24th. This was our first date in a LONG time. I think the last time we went on a date was back in July. We went to a movie and grabbed a bite to eat. It was really nice. We recently changed our respite hours from a provider to what is called CDS (Consumer Directed Services). This basically means that we can hire/fire/train our own nurses. We have to do some paper work, but we are able to hire some nurses that don't want to work for another company. They can schedule more freely. We made this change as of 1/1/2010. It is great. Now we can hire some of Casey's previous nurses. They can still keep their full time jobs and just come by when they have some free time to make a little extra money. The initial setup is a lot of work. Once it is all setup though it just requires me to track and report hours for payment and taxes.

On Monday last week we removed Casey's GJ Tube. She started getting really upset over the weekend and it was just getting worse. We had been slowly trying to get her ready to feed in her stomach. On Monday we gave up on the GJ all together. She was so upset and nothing else seemed to be helping. We pulled it out and with in minutes her hear rate came down 40 points. She was so happy to have that thing out. As were we. In case she did not tolerate the G Tube feedings we scheduled an appointment to have the GJ redone on Thursday last week. We figured that would give us enough time to see if it was going to work or not. We are so happy to report that we canceled Thursday's GJ placement. She is back to her pre-hospital feed rate. She seems so much happier now.

Once a year we get a month that is CRAZY busy. It looks like February is that month. I spent most of the week last week on the phone scheduling everything. In addition to Casey's usual therapies she has a bunch a annual stuff coming up. She has a dentist appointment tomorrow. We meet the new pediatrician next week. The week after she has an eye appointment. The following week is her yearly MDCP review. If that is not enough, some of her quarterly and bi-annual appointments are this month too. She has GI, Pulmonary and ENT fit in where we could find time. Then early March she has Ortho as well. Today is the only day (other than weekends) that we do not have multiple tasks scheduled.

I am sure I will have plenty to post over the next few weeks. As always we hope everyone is doing well.

Fun Weekend

Casey had a really great long weekend. On Saturday she watched lots of videos. I had her in her chair and put on "Up" for her. She loved it. Most of it I should say. When the mean dog started growling and being mean in the middle she got a little upset. I picked her up until the scene ended then put her down on the couch where she could see to watch the rest. She would talk to the tv every so often - very cute. Then when it was over she yelled for me to put on something else. She was very into videos Saturday.

Sunday her Cappy (my mom) came to visit with John for a little bit. Casey slept through most of the visit though. She tried to wake up a few times to say hello, but for what ever reason she was exhausted Sunday afternoon. She slept a lot, then refused to sleep Sunday night.

Casey slept all morning and into Monday afternoon. However she woke up just in time to play with her new friend Kennady. Kennady came over with her mom and 2 little brothers for an afternoon play date. Everyone had a really good time. Hopefully Casey can have them over again soon.

Sadly the weekend is over. Tim has a busy work week this week so it was nice to have the 3 day weekend. We hope everyone's weekend was a good one.