Casey's Blog

Long Overdue Post

2012-02-06T21:40:00.001-08:00

Wow, it's been a while since my last post. The good news is that there is not much to report. It has been a rough winter for Casey. It seems like she gets sick with something, then as soon as we get her over it she gets sick with something else. Luckily none of these have been too serious. It just seems as though it really is always something. I have heard a lot of other parents say the same thing about their kids. I think it must be the weather. We have still not seen winter show up. We have a few days where it is cool enough to turn on the heater (or so Tim says), but then all of a sudden it gets hot again and we have the AC back on. I know this is hard on my respiratory system so I can only imagine what this is doing to Casey.

Casey has missed a lot of school and therapy so far. I think she was out of school most of the time between Halloween and the end of January. She may have gone 2-3 times total during that period. We have finally gotten her back to at least going one of her two days a week. She did not go today. She seems to have some sort of stomach bug that kicked in last week. Sunday was AWFUL!!! We suctioned non-stop and she was just miserable. I thought if she could get a good night's sleep she would be fine today. However, she was up all night. She was so tired this morning and tried to get some sleep. I decided to cancel school. Today wasn't quite as bad as yesterday, but not great either. She just now (11:PM) went to sleep for the night. We'll see how it goes. Hopefully she will be able to go to school in the morning.

It seems like all of my days are running together over the past few months, so I won't even try to catch everyone up on all of the little details since my last post. On Casey's good days she has been enjoying all of her arts and crafts that she got for Christmas, and watching lots of movies. We are trying to plan her birthday for April. It sounds far off, but it will be here before you know it. We can't decide if we are going to do a party, or just something special with family. We have barely started to work out the details.

Tim has been busy with work and his wood shop out in the garage. He is getting really good with the wood tools. I have been working with a couple of groups (local and online) that support the special needs community(s). One group I work with just launched a new website. It is pretty exciting. If you want to check it out (especially any other SN families reading this) it is called Mommies of Miracles (MOM). You may recognize Casey as the "Trivia Tuesday" image on the main page. It's an old picture, but very cute.

That's about it for now. Our night nurse called out tonight, so I am on the night shift and should get back to work. As always, we hope everyone is well.

Success

2012-01-06T10:54:00.000-08:00

I am very happy to report that we are HOME! Casey did amazing. They were able to place the tube in the right ear. I was really worried it was going to become another cholesteotoma. The doctor cleaned out the left ear's cholesteotoma and said that in general it is doing pretty well. We still have to get it cleaned often, but we do not need to start looking into a major reconstruction surgery.

The dentist was going to get some images and do some cleaning. However, we found out that in order to do that Casey would have to be intubated. That was a deal breaker. We decided to cancel that part of the day. Her teeth are doing okay, and we can do with out the images for now. Intubation just adds so many extra risk.

Anesthesia did an amazing job. They were prepared, they listened, and they got us back to our princess as quick as possible. The entire experience today was positive.

When we got to Casey she was still asleep. We sat and waited and a few minutes later she was up and ready to go. After she woke up they gave her some tylenal and had us get her dressed.

Casey was excited to be home. As soon as we got her back to her favorite spot on the couch she started making her happy sounds. She has doctor's order to just rest today (I need those orders). I don't think any of us will have a problem with a nice quiet weekend.

Thank you all for your thoughts and prayers. We really appreciate all of you. Have a wonderful weekend, now that we are home I know that we will :)

Ready for Surgery

2012-01-05T18:16:00.000-08:00

We spoke with the hospital today and we are all set for Casey's procedure tomorrow. Her dentist wants to get some images of her permanent teeth (just to have a better idea of what is going on) while Casey is under. The initial ear procedure was scheduled quickly to reduce the window for the ear to get worse. Then we called the dentist just yesterday (I kept meaning to and never got to it). They were able to work together and get it all scheduled. Thankfully we have wonderful doctors that really care about our little princess. We are so grateful that they understand her risks and are will do jump through hoops to get things done in the safest way for Casey. I am not sure what time we will be home tomorrow. As soon as we get back and settled one of us will be sure to post an update. Thanks again for all of the thoughts and prayers.

Those Darn Ears

2012-01-03T05:00:00.000-08:00

Back in June 2009 Casey went in for routine ear tube surgery. When the ENT got in he found that her left ear had a Cholesteotoma. The doctor put the right tube in and from that point on we had been going in to see ENT every 3 months to have them clean out her left ear. The right tube fell out sometime in 2010 and the doctor has been checking the right ear while we are there to have the left ear cleaned. A few months after the right tube fell out the doctor noticed some negative pressure in the right drum. However, with the extra risk any procedure puts on Casey, he has just been watching it to make sure it does not progress.

Just before Christmas Casey went in to see the ENT. This winter she seems to be getting more ear infections that usual. Ear infections and drainage are pretty common with Cholesteotomas, so we have just been treating them with drops each time. A few weeks ago we noticed her right ear was draining some too and so he took a closer look. We had been able to maintain that right ear's pressure for quite a while. The pressure has increased this winter enough for him to suggest putting a tube back in the right ear. Here's where it gets a little tricky- this is what we did in 2009 and we didn't act quick enough. Between the time he suggested tubes and the time we got Casey in for the procedure, the left ear perforated and advanced to a Cholesteotoma.

We are moving quick this time. Casey is scheduled to get her right tube done on Friday. While she is there the doctor is also going to clean out the left ear really good. He should be able to give us a better idea of how the left ear is doing. We are very hopeful and optimistic that the doctor will be able to get the right tubes placed. There is a chance he will not be able to place it and we will have to start dealing with a Cholesteotoma on that side as well.

Any procedure is scary for any kid, and extra scary for kids with respiratory issues. We will spend lots of time with anesthesia making sure they know what to expect. Casey has had this procedure done at this hospital before and things went very well. Regardless of positive past experiences, we are always a mess until we have her back with us. The ENT knows Casey very well. He is planning to do this with just gas and to avoid an intubation. That is the current plan.

We will try to update late Friday or sometime over the weekend to let everyone know how it went. Please keep Casey in your thoughts and prayers this Friday.

Teeth

2011-12-27T18:21:00.000-08:00

Last week was a busy week for Casey. We expected with it being the week before Christmas that it would be slow, but we were wrong. Casey had school Monday and Tuesday. A dentist appointment on Wednesday. Casey saw the ENT and had therapy on Thursday and therapy on Friday.

Casey loves going to the dentist. She always gets excited when we tell her we are going. She did great (as always). The dentist told us that her bottom 4 teeth were all loose and ready to come out. She said that she expected them to fall out by the new year. I thought she was crazy. Turns out she was right. Casey lost 2 today. The first fell out on it's own. Then the second was really loose. Casey kept sticking her tongue out playing with it. Each time she did it fell further and further forward. It was just dangling there and she was making such a drooly mess. I ended up reaching in and it came right out when I touched it. Both teeth are safely tucked under her pillow waiting for the Tooth Fairy now. She is not supposed to grow up this fast!

I'll post more on the ENT appointment later. I have to go make sure that we are on the list for the Tooth Fairy tonight :)

Merry Christmas

2011-12-26T10:48:00.000-08:00

It's official, Casey LOVES Christmas. She was really into it this year. While we were in the kitchen getting dinner ready, she wanted to come in and be in the middle of the conversations. When we ate dinner, she wanted to sit at the table. When it was time for presents she was wide eyed and ready to go. Usually she is happy hanging back in the living room and away from everything. It was really cute to see her want to be involved this year. She was so excited with every present she opened too.

Most of my family was able to come in and enjoy the holidays with us. It would have been nice to have Tim's family around too, but they are pretty far away. It was nice that most of his family was able to be together. We hope that everyone had a wonderful Christmas. Here's to a happy, safe and healthy 2012.

We thought you all may enjoy some Christmas photos of our little princess.

Back to School

2011-12-13T10:07:00.001-08:00

Casey is finally recovered enough to go back to school. I was hoping she would go yesterday, but we couldn't get her to stay awake. The antibiotic seems to have helped clear out her lungs some (we are still clearing out a little- but she is feeling much better). Now that she is finally able to get comfortable and sleep she had a lot of sleep to catch up on. Yesterday was a lazy lazy day. This morning she got dressed (against her wishes) and we took her to school. Once she was there she remembered that she likes school. Her teacher brought in a little tree for Casey to decorate for the classroom. Casey had a great time. When we got there to pick her up she was so proud to show it off.

I spent the weekend making fudge and getting little gift tins ready for all of her teachers. Most area schools are out on the 16th. I assumed Casey's school was out all next week as well. I was wrong- Casey has school next week. I had another week to get stuff ready. Oh well, at least I am done with teachers now. It leaves me some time to finish up everyone else.

Update

2011-12-11T10:41:00.000-08:00

Last week I mentioned that Casey got sick Tuesday afternoon. Wednesday she seemed like things were going better. We did not have any fevers, and she was pretty alert. Wednesday night she refused to go to sleep. Her night nurse said she finally went to sleep around 12:30. The nurse also mentioned her lungs sounding a bit crackly. The morning nurse noticed the lung sounds as well Thursday morning and they seemed to be getting worse. We also started suctioning lots of nasty looking stuff out of Casey. Needless to say, we made a few calls to doctors.

Casey's pulmonary had us come in for chest xrays. Casey has pneumonia in her right lung. We are pretty sure she was so exhausted after the movie that she fell asleep instead of coughing up the food she had refluxed. When she woke up Tuesday with the spiked fever and I suctioned out a lot of food, I think she had already aspirated on some of it. Aspirations are no fun, but at least they are not contagious. Casey started on an antibiotic Thursday afternoon. The secretions are looking much better already. She is still having some breathing issues. We have added extra breathing treatments that seem to help.

On Saturday Casey was planning on going to her holiday party. She had been looking forward to it for weeks. This is a special party for kids in the Blind Services Program (many of the kids are a lot like Casey). They have Santa and all kinds of accessible fun for the kids. She was doing better, but still sick yesterday morning. She got very excited about going to the party when we talked about it. Since she isn't contagious, and had been looking forward to seeing Santa for so long, we decided to go to the last 30 minutes of the party- just enough time to see Santa. She did great. I was torn on taking her, but I am glad that we did. She LOVES Santa. She told him everything she wanted as soon as she saw him.

We are hoping she is up for going to school this week. She hasn't been since Thanksgiving. She had her ear infection and as soon as that cleared up this started. Ugh! It is the last week of school before Christmas break. We will just have to play it by ear.

We hope that everyone is doing well. Have a great week :)

Muppets

2011-12-06T14:40:00.000-08:00

Today Casey had a special treat. The movie theater that did her Make-A-Wish a while back has been great about letting us know when they get kid movies. We were all very excited when they told us the Muppet Movie was coming. The theater told us that the best times to come are Monday or Tuesday morning at the first viewing. Tim took off work and we let Casey skip school so we could all go see the movie today. Emily, Casey's nurse, came with us. The movie was great. Casey is not a big fan of previews, but once the singing started with the Muppets she was one happy girl. She stayed awake and alert through the whole thing (all 2 hours). I have to say, I am a big Muppet fan and I think I liked the movie as much as she did.

This afternoon Casey is not feeling well. I hope that getting her out in the cold this morning did not get her sick. She is resting now, and I hope that with some rest this afternoon she will be fine in the morning. She always likes to keep us on our toes.

Getting Ready for Thanksgiving

2011-11-18T12:11:00.000-08:00

This year has flown by. I know I say that every year, but they just keep going by faster and faster. I need to find a way to slow things down (good luck, right).

Overall things are going well. Casey seems to have fully recovered from the drug allergy we were dealing with for a while. She is back to causing trouble. School is out next week, and all of her therapist are off as well. It should be a nice quiet week. We have a few things to do Monday and Tuesday, but then we are just going to enjoy the down time.

Casey loves the holidays. She listens to Christmas music all year. I have to admin I love Christmas music too. We plan to put up all the decorations on Friday after Thanksgiving. The lights on the tree always seem to make Casey happy.

I think Casey is in the middle of another growth spurt. Her legs seem a bit more boney than usual and her clothes are all a little short. She is getting so big. It looks funny when I try to carry her around. Her long legs come down past my knees.

That's about it for now. We hope that everyone has a wonderful Thanksgiving.

World Prematurity Day

2011-11-17T08:22:00.000-08:00

It's hard to believe that just a little over 5 years ago Casey came into our lives. I can't imagine life with out her. Today is World Prematurity Day and I just wanted to write a little something for all of the other families that have, are or will find themselves in the NICU (a very scary place for ANYONE).

Doctor's did not give us much (none at all really) hope. The time that we spent in the NICU with Casey was terrifying, felt like it lasted an eternity, and was the most isolating lonely time. We never gave up hope, and our little miracle proved all the doctors wrong. She still has a lot of medical issues and challenges in her life, but she is very much alive. Her personality, her spirit, and even her diva attitude grow bigger every day. Our Casey is an inspiration to everyone that has ever heard her story.

I don't want to tell everyone it gets easier (it really doesn't). But you do learn to adapt. You redefine 'normal' and you adjust goals (yours and your child's). You learn who you can count on, and who you can not. I have learned to treasure EVERY moment. We celebrate little milestones everyday. We may never get to walk or talk, but we focus on what we can do and celebrate the heck out of those events.

To all of the wonderful parents, grandparents, friends, family, etc. out there to preemies and special needs kids, thanks for all you do.

Halloween

2011-11-01T08:42:00.000-07:00

Casey loves Halloween. She wore her Tinkerbell costume to school yesterday. Her teacher brought in 2 of her puppies and dressed them up as well. After school Casey went to trick-or-treat at all of her doctor's offices. They were all very excited to see her. She had a great time. On our way home from visiting all of her doctors we stopped by my grandparents (her great grandparents) for a short visit. Casey was about to crash by the time we got there so we could not stay long.

After taking a good nap Casey was ready for round 2. We got back into her costume and went trick-or-treating to a few houses in the neighborhood. I was happy to see that there were a few that registered with CLU as homes with non-food treats. Hopefully as this catches on even more homes will think about kids like Casey when getting ready for trick-or-treaters.

Casey was so proud of her Halloween treats. We got home and she snuggled with Daddy while I handed out stickers and toys. When she went to bed there was no fighting at all, she went straight to sleep and slept hard all night. Tinkerbell was exhausted :) It was pretty cute, the glitter on the wings kept shedding. It was like she was leaving a little pixie dust trail behind her.

Rather than just uploading a picture from yesterday, I thought I would show you all how much Casey has grown. Here are Halloween pictures for each year...

	2006- Casey was a little bunny. I think she wore this costume all of 20 minutes. We had just enough time to snap a few pictures then she as mad and wanted out :)
	2007 Casey had her foot surgery early October, so we had to work with 2 full leg casts. Tim found a glow in the dark skeleton shirt and it was perfect.
	2008 Casey was a blue flower fairy. She picked it out all by herself. We took Casey to a costume shop and she shocked us all. She was very into yellow at this time so the blue was a surprise. She was a beautiful blue fairy.
	2009 was a tough Halloween. Casey had been sick for about a week before. We ended up in the hospital the next day were we stayed until early December. She was not up for wearing the Minnie Mouse costume, but she tolerated the ears long enough for a picture.
	2010 Casey insisted on being a nurse. We had little scrubs made with her name on them and everything. She had a great time visiting her doctors and dressing up.
	2011 Casey chose Tinkerbell. She has been all about princesses and fairies this year. She picked Tinkerbell right away and I think she chose well. She helped me make little puff ball socks and everything.

Making a Splash

2011-10-22T08:27:00.000-07:00

Casey was so excited to get back in the pool this week. When I went to get her out of bed I asked her if she wanted to swim she threw her arms up and started making her happy noises. One of her little friends was in the pool this week too. She loves to swim with her friends.

Casey went back to speech and occupational therapy this week too. She was happy to be there, but got kind of tired. She did good though.

The therapist are working with Region XIII now to try out new technology (tools like switches) with the kids they treat. They are going to try a few over the next couple weeks to see if we can find an even better fit for Casey's needs. I am excited to see what they find.

Casey is getting ready for Halloween. As long as she is up for it, I think she is going to check out the CVS Trick-or-Treat tomorrow. As always, we hope everyone is well.

Slow and Steady

2011-10-20T08:50:00.000-07:00

Casey has been off of the "bad" medication for a little more than a week now. She is slowly starting to get back to her usual self. She finally went back to school on Tuesday. She is going to get back to her therapies this week too. She still has some tough spots off and on during the day (and night), but we are getting there. I remember coming off the last bad tone medication taking a while too.

Casey's Tinkerbell costume came in this week. It is so cute. She is going to be the cutest little fairy ever.

That's about all for now. If you have not already, be sure to take part in CLU's Trick-or-Treat Project. It only takes a little effort to make a BIG difference. Be sure to help spread the word too. Have a great day!

Drug Allergies

2011-10-10T13:19:00.000-07:00

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

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

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

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

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

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

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

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

Welcome to CLU

2011-09-29T11:52:00.000-07:00

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

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

Over the River...

2011-09-07T07:35:00.000-07:00

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

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

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

First Day of School

2011-08-29T15:54:00.000-07:00

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

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

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

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

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

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

Back to School

2011-08-23T11:06:00.001-07:00

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

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

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

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

Special Needs Dance

2011-08-11T10:11:00.000-07:00

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

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

July Review

2011-08-04T12:59:00.000-07:00

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

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

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

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

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

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

Casey's Fun Day

2011-07-15T12:54:00.001-07:00

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

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

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

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

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

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

Have a great weekend.

Pillow

2011-07-06T07:02:00.000-07:00

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

Casey's Jams

2011-06-27T19:49:00.000-07:00

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

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

Highlight

2011-06-26T20:06:00.000-07:00

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

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

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

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

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

Hot Hot Hot

2011-06-11T19:24:00.001-07:00

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

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

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

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

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

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

Homemade Toys & Activities

2011-05-25T13:05:00.000-07:00

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

Updates

2011-05-25T07:23:00.000-07:00

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

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

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

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

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

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

Pictures

2011-04-27T13:31:00.000-07:00

Where Does the Time Go?

2011-04-26T12:35:00.001-07:00

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

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

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

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

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

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

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

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

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

Such a Cutie

2011-04-08T13:28:00.000-07:00

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

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

2011-04-07T13:35:00.000-07:00

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

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

First Day of School

2011-04-06T13:42:00.000-07:00

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

New Glasses

2011-03-24T18:21:00.000-07:00

Casey went and picked up her new glasses today. They are so cute. I knew they were Disney Princess glasses, but I did not realize they are Belle glasses. Belle is one of Casey's FAVORITE princesses. They are a dark purplish color with a pink inside. They have little flowers etched in and some bling in the middle of the flowers. Very Casey. Instead of a standard glasses case, they came in a little pink purse.

She was so funny. When we got to the office she knew she was there to get something special. She perked right up as we wheeled her to the fitting table. The adjustment guy showed her the mirror then let her watch as he fitted them.

When he got them on and moved his hand so she could get a good look she made everyone in the store smile. As soon as she saw them she let out a very loud, very happy sound. I think she approves.

The lighting on the picture I took makes them look black. They are purple, and super girly. We will let her pick out a new outfit next week for her first day of school. She is going to be so cute. What am I saying, she already is so cute. She is going to somehow be even cuter though going to school like a big girl :)

School Update

2011-03-13T14:56:00.001-07:00

Casey's school has created a medically fragile classroom/program. They designed it largely based on Casey's needs. It has been kind of exciting. We have been given the opportunity to help design the program. The classroom is being built in Casey's home campus (just down the street). To start she will be the only student. There are 2 other kids that may join her soon.

We are going to take baby steps. In April Casey will start going to school. She will go for 1 hour, 2 days a week. We will slowly work up her endurance. Next year the goal is to have her attend school for 6 hours a week. This may be 3 days at 2 hours each or 2 days at 3 hour each- what ever seems to fit Casey best.

They have ordered a lot of special equipment to help create a safe and comfortable learning environment. The district has put a lot into the program. All of the staff we have been working with are very excited about the new class. Casey is getting excited about it too. She has been reading lots of books about going to school. She's been watching lots of shows about school. Her therapists have been bringing things by for her to see what will be waiting for her at the school. I think she will like it.

On Thursday when we went to see the class and work out a schedule things were not fully in place. They showed us pictures of everything that is on order, and we saw what they did have. They expect over the next week or 2 to finish setting things up. We will take lots of pictures when we go up for the official first day of school.

We are excited for Casey. This is a HUGE step for her (and us). We feel good about it. The school has listened to our concerns. They have done a good job addressing all of our safety needs. I am sure with it being a new classroom and a new program there will be some adjustments as things get going. It's very exciting. Casey's nurse will be going to school with her. I think she is almost as excited as Casey. We will keep everyone posted with pictures and details. Now I just need to find the perfect first day of school outfit for the princess.

Busy Week

2011-03-13T14:36:00.000-07:00

Casey had a very busy week. Last week during water therapy we noticed her left toe was all red and swollen. We could not tell if it was an ingrown toe nail or a pressure sore. Over the weekend it got a little better, but not fully. Over the weekend we noticed her left ear (the cholesteoma) was draining a lot. Between the toe and the ear we knew we had to see a few doctors this week.

Tuesday we packed everything up for the day and started with the podiatrist. I was a little leery since there are no pediatric podiatrist in town. We needed to get Casey's toe checked though so we used the doctor her pediatrician recommended. He was so nice, and very gentle with Casey. He said it is hard to tell for sure, the redness could be either of our concerns. Since it was getting a little better we were to just stay the course. You can still see some pink today, but for the most part I think it is better.

Next we had Casey's annual eye exam. Last year we noticed a weird area in Casey's right eye. The doctor said it was from being too dry. We treated over the past year and it looked the same if not worse. So we talked about it some more with the doctor. Casey sleeps with her eyes open fairly often. In order to try and maximize moisture she is sleeping with an eye patch now. The doctor gave us a hot pink one. I have to say, Casey is the cutest pirate ever. She doesn't seem to mind it either. Casey also ordered new glasses. She has been on a purple kick. She got pink & purple princess glasses. They should be in later this month.

After lunch and OT Casey had an appointment with ENT. Sure enough the drainage was an indication of infection. The doctor cleaned out her ear and sent us home with some drops. Casey has had these drops before. They always seem to kick in pretty quick.

On Friday we took Casey in to get her AFO's readjusted in case they were part of the toe issue. When we were making our way across the parking lot her orthopedic doctor saw us. He came over to say hi and check up on Casey. Casey's right ankle has dropped some and he was a bit concerned. Good news though. Later that day Casey's PT brought her a foot drop splint. We have been putting it on for a few hours, off for a few since Friday. Already her ankle looks much better.

This week is spring break. Casey will still have all her therapies up at the hospital, but no school therapies this week. I am sure she will find plenty of fun stuff to fill her free time. On that note, there is some school news to report as well. I think I will do a separate post for all of those details.

2010 Numbers

2011-03-06T14:14:00.001-08:00

Each year I feel like time goes by faster and faster. I always find myself wondering where the time went. I took a little time and ran some data for 2010. The numbers are pretty crazy.

If you look at our Resources tab you can see that there are many people contributing to Casey's well being. It truly does take a village. Tim and I are so grateful to the amazing people we have helping with Casey.

In 2010 I ran numbers for doctor appointments, therapy appointments, and nursing shifts. I just focused on Casey's health related visits. I did not add up the monthly (or more) visits from the nursing agency to come out to do paperwork, assessments, etc. I also did not add up evaluations from different professionals for services, new therapies, equipments, etc. I did not include numbers for the calls we made to health care professionals (some resulted in appointments, but many did not). I did not include numbers for the appointments and meetings Tim and/or I had on Casey's behalf (school, services, etc). In addition I did not include special needs fun activities (play groups, parties, trips, or Casey's Make-A-Wish). Not to mention, there is nothing tracking the time we spend making appointments/managing Casey's schedule, ordering supplies, training staff on Casey's needs, dealing with insurance or other billing issues, etc.

Casey had 65 doctor appointments in 2010. These include visits to the pediatrician, specialists, 4 EEG appointments, and 6 AFO adjustments. There was a period of nearly 4 months with weekly appointments to address her ear wound this year. Each specialist sees Casey at least twice a year, some as many as 6 times a year.

Next I added up therapy appointments. Casey had 248 therapy appointments. These include physical, speech, occupational and vision at home. This number also includes physical, water, speech and occupational out of the house. There are a few music and massage therapy appointments in this number as well. Sadly those are both on hold for now. Hopefully they will pick up again soon.

Finally I added up nursing shifts. On an average week we have Tuesday-Friday days covered (8 hours). We also have Sunday-Thursday nights covered (8 hours). On a good week we get a respite shift or 2 as well (3-6 hours). When I added these up for 2010 Casey had 461 shifts covered.

Happily, there are no hospital stays or surgeries to add to 2010's numbers. That always makes it a good year. We are hoping to get Casey into school in 2011. I am not sure how much that will affect these numbers next year. I guess time will tell.

Long Week

2011-02-28T06:45:00.001-08:00

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

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

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

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

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

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

Updates

2011-02-18T08:58:00.000-08:00

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

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

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

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

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

3 in a Row!!!

2011-02-01T13:21:00.000-08:00

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

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

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

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

On a Roll

2011-01-21T12:14:00.000-08:00

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

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

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

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

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

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

Back to Usual

2011-01-10T11:07:00.000-08:00

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

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

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

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

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

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

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

Happy New Year

2011-01-01T12:51:00.000-08:00

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

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

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

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

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

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

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

Holiday Party

2010-12-15T10:12:00.000-08:00

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

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

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

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

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

Looks A Lot Like Christmas...

2010-12-07T10:45:00.000-08:00

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

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

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

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

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

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

We're Back!

2010-11-18T19:39:00.001-08:00

We are back online!

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

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

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

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

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

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

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

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

Updates

2010-11-10T06:43:00.000-08:00

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

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

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

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

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

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

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

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

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

Some Recent Photos

2010-10-29T12:42:00.001-07:00

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

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

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

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

Trick-or-Treat

2010-10-29T10:35:00.000-07:00

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

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

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

Have a happy and safe Halloween!

Updates

2010-10-22T08:25:00.000-07:00

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

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

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

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

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

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

Resting Up

2010-10-09T00:46:00.000-07:00

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

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

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

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

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

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

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

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

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

More Details

2010-09-26T11:49:00.000-07:00

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

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

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

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

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

Sing-A-Long

2010-09-24T19:55:00.001-07:00

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

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

Busy Girl

2010-09-20T11:10:00.000-07:00

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

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

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

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

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

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

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

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

Updates

2010-09-09T07:20:00.000-07:00

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

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

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

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

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

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

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

ARD and More

2010-08-29T08:19:00.001-07:00

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

2010-08-20T12:18:00.000-07:00

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

2010-08-13T08:40:00.000-07:00

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

2010-08-10T08:30:00.000-07:00

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

2010-07-30T13:23:00.001-07:00

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

2010-07-26T19:37:00.000-07:00

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

2010-07-24T17:35:00.001-07:00

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

2010-07-19T15:49:00.000-07:00

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

2010-07-12T15:46:00.001-07:00

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

2010-07-08T13:34:00.000-07:00

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

2010-06-28T09:15:00.000-07:00

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

2010-06-22T19:43:00.000-07:00

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

2010-06-17T09:57:00.000-07:00

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

2010-06-08T13:28:00.000-07:00

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

2010-06-07T19:11:00.000-07:00

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

2010-06-03T15:06:00.000-07:00

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

2010-05-29T12:38:00.000-07:00

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!!!!

2010-05-24T09:22:00.000-07:00

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

2010-05-19T13:17:00.001-07:00

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

2010-05-16T16:57:00.000-07:00

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

2010-05-02T15:39:00.000-07:00

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

2010-04-30T17:46:00.000-07:00

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

2010-04-25T17:35:00.000-07:00

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

2010-04-08T06:37:00.000-07:00

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!

2010-03-25T13:45:00.000-07:00

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

2010-03-16T08:06:00.001-07:00

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

2010-02-26T12:29:00.000-08:00

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

2010-02-17T11:38:00.001-08:00

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

2010-02-01T12:28:00.000-08:00

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

2010-01-19T08:50:00.000-08:00

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.

Back in the Water

2010-01-07T19:03:00.000-08:00

Casey started water therapy back up today. She was so excited to be in the pool. That was until Margaret started stretching her legs. Casey really doesn't like that part. She got through it though and was able to do some swimming. I think she was really happy to be back in the pool. I keep telling Tim we need to get one for her here in the back yard :)

Casey has been off BiPAP for 2 nights now. The first night was not so fun. She was in her room with her night nurse. Casey did not want to be in her room. She is used to sleeping in our bed and snuggling up. She refused to go to sleep. She fussed and carried on until about 3:AM. When she finally did settle down and basically wore herself out from complaining, she only slept for a couple of hours. It was a really rough night. We really like the idea of having a night nurse and a night off every now and then. It just isn't worth it. We talked about it and Tim and I both would rather just put her back in our bed so she gets a good night sleep. She just isn't ready for her bed. We can try again later.

Sadly, we no longer have a night nurse. I felt bad letting her go. She did not do anything wrong. Casey just isn't ready. I made sure the service knew that the nurse did a good job. I still felt bad though.

Last night Casey was back in our room. She went right to sleep and slept pretty much all night. She woke me up a few times to suction (I don't think she woke up). Around 6 this morning she was up. I thought she was just awake, but it was a diaper that woke her. I put her to bed about an hour ago and it is silent in there. She is so funny. At least she is sleeping at night again. Staying up all night to complain about BiPAP, then being in her bed, etc. had her sleeping all day. It was not working for any of us. I am so glad she is getting back to her old schedule again.

Next step for us is to start working on feeding her in her tummy again. This is going to be a very slow process. I think/hope she will do well with it as long as we go slow. As always we hope everyone is doing well.

HUGE News!!!!

2010-01-05T14:29:00.000-08:00

Today was a great day. Casey had her follow-up pulmonary appointment. He was happy with her xray (no more collapse). We talked about BiPAP and how much she has been fighting it over the past week or so. We talked about her overall status, improvements, risks, etc. After going over everything the doctor decided to D/C (discontinue) BiPAP. We don't get to get rid of it, but Casey does not have to be on it regularly anymore. We packed it up as soon as we got home. The plan is that in the future if she shows signs of any kind of respiratory issues (which she does off and on through the year) we put her back on BiPAP at night until she recovers. We also call pulmonary and will most likely start antibiotics at that time as well. We are very happy with the new plan.

We still have night nursing right now. We are going to see how this week goes. Taking care of Casey off BiPAP is 100% different than on. We will see how the night nurse adjusts to the change. If things go well then maybe we can keep night nursing a few days a week. It is nice to get a break a few nights a week and really sleep. Hopefully everything will work out well.

I am really looking forward to Casey sleeping through the night again. Once we get her back on a good sleep schedule we will start working on getting her to eat in her stomach again. I love days like today :)

We hope everyone is doing well. Casey starts back water therapy Thursday. She is going to be so excited. We will post more later about her off BiPAP progress.

Latest Updates

2009-12-30T20:36:00.001-08:00

Casey had a really nice Christmas. We hope all of you did as well. She got lots of new toys, clothes and books. All of her favorite things.

Last week we had her ENT appointment. The appointment was way over due. I knew it was going to be rough. Casey was really upset that he had to clean her ears out. We will go back again in 2 months next time. Before we ended up in the hospital every 2 months was pretty good. The stuff was not super thick and he was able to get it out pretty quick and easily. Hopefully her next appointment will be an easy one.

Casey went back on Tuesday for another chest xray. I still have not heard from her pulmonologist. I really hope he calls soon to get his take on the image. We really want to be able to get her off BiPAP soon. Some nights are not bad, but some nights she really fights it.

Casey started her outpatient therapies back up at Dell this week too. She had OT on Tuesday. It went really well. She did a good job bending. We will start water therapy next week. She is going to be so excited to get back in the water. I am not looking forward to getting into a swim suit this close to the holidays. It makes her happy though so I will have to just get over it.

We have a new nurse coming in the morning. If she works out she will be picking up Mondays moving forward. She will also be available when Casey's other day nurse can not make it. I hope it goes well.

That's about it for now. We are looking forward to a nice quiet New Year's this year. We are also looking forward to a good 2010. We hope you all have a wonderful and safe time where ever and how ever you are ringing in the new year.

Update

2009-12-21T14:43:00.000-08:00

A few things have happened since our last post. Casey had her follow-up chest xray last week. The doctor said it looks a little better, but still needs some work. For now he wants us to continue the course. We are doing lots of breathing treatments and she is still on BiPAP all night.

Last Wednesday Casey started to sound a bit wheezy. By Friday she was really wheezy. We were told that she is at increased risk for pneumonia due to the collapse. In addition to the wheeze Casey was also having more secretions and they were getting pretty thick. I called her pulmonologists and we got her started on an antibiotic. I don't think she has pneumonia, but we want to be sure if this is early signs that we stop it before it gets bad. After just 24 hours she was sounding better already. Today she is not wheezy at all. We have to finish a 10 day course.

This morning Casey had her GI follow-up appointment. I made it before our Monday-Tuesday nurse fell asleep on the job. I really wanted to keep this appointment if possible. I called a few people and lucked out. Casey's previous nurse was off and available. She came over this morning and went with us. Casey is always happy to see her. They had a good time catching up this morning. The appointment went well too. Casey has gained a little bit of weight since discharge. She is back to 29 pounds now. We talked about her poop issues and have a few things to try. Hopefully we can get them a little less runny and less frequent soon. We go back in 4 weeks.

After we got home I had a meeting with Outreach. They are a DBA that poses as a middle man between us and Medicaid - MDCP. We can use this to hire our own nurses for our respite hours. Between previous nurses that Casey loves and a nurse we met while in the hospital there are a few nurses that we would love to stay with Casey so we can go to dinner and/or a movie every now and then. He is doing some more paperwork and will get back to me. If this goes well, we should be able to start doing this after the new year.

Tomorrow is a quiet day. I think we will just do some playing and read some stories. Then Wednesday we have ENT. Casey missed her cholesteoma cleaning while we were in the hospital. This is never fun, but we have to stay on top of this to prevent needing a surgery.

Casey is loving the Christmas lights and music. Tim wants to leave them up all year for her. If they didn't get so dusty I would say okay :) I think that is about it for now. We hope everyone has a wonderful Holiday.

Since We Came Home

2009-12-11T11:47:00.000-08:00

It has already been almost a week! It feels like we just came home yesterday. I think we have been going nonstop the entire week. Good new, it makes the time fly. Bad news, we are exhausted!

We spent Saturday evening and Sunday trying to get caught up on laundry, TV and just resting. Casey slept all day Sunday. She was so happy to finally be in her environment it was the first time she really relaxed in so long.

We had nursing start back at home on Monday. We had just started training a new nurse a few days before Casey went into the hospital. Since Casey was sick at the time, I ended up holding Casey most of the time (just trying to console her). We were not able to really tell if she had the skill set that we needed, but she was really sweet with Casey. She came back on Monday to start back up, and was supposed to be the day nurse moving forward for Monday and Tuesday.

On Monday we spent most of the day going over all the medicine and equipment changes with the new nurse. Casey slept most of the day and it was a pretty easy day. Then Tuesday I am not sure what happened. There were a few things that were not right (late medication, papers, etc). Nothing major, just a few small things. When I would ask about them the nurse was so defensive and had a million excuses (mostly blaming everyone else but her). It was tiring. I did not need excuses, I just wanted clarification (did Casey get this yet, where did you put that paper, etc). I was trying to get some housework done. While I was cleaning in another room (leaving the nurse to sit with Casey on the sofa) the nurse fell asleep. I came back in and saw this and was shocked. Casey was fine, but obviously not acceptable for a nurse - needless to say she is no longer with us.

We also starting night nursing this week on Wednesday, since Casey has to be watched on her machine at night. The night nurse will normally help Sun-Wed. She was not as familiar with a lot of our equipment and needs as we would like - I wish they could teach a Casey course in nursing school. I think we can train her and she should work out well. The best part, she stayed awake! It is just going to take a few shifts with her to get her up to speed. I hope that sometime next week I will feel comfortable enough to actually go to bed and really sleep while she is here. I have not slept (really slept) in about 4 years now. The idea sounds wonderful. It is going to be hard to get my body to allow it though.

BiPAP has been going okay. Casey has big poops at night that are a little tough with the mask, since she is not in a comfortable position, but she is getting used to her room and the mask. She is starting to fall asleep a little easier each night. We were supposed to go Monday for her follow-up xray. Now that I do not have a Monday nurse we had to reschedule the xray for Wednesday next week. Maybe the extra couple of days will be what she needs to have a great xray. I am so hopeful that her lung will be healed soon. I want her to have her sleep and play schedule back. Having to keep doing round the clock treatments and other stuff is so hard on all of us.

I think that is about it for updates right now. We are trying to catch up and get our holiday decorating and shopping done. I will post again next week, probably after we get the xray results!

WE ARE HOME!!!!

2009-12-05T19:24:00.001-08:00

We are all so happy to report that we are home as of late this afternoon. We got all of our equipment set up yesterday and they wanted us to do at least one night there with our equipment before going home. We were all packed up and ready to go before 7AM. However they wanted to do xrays, then have all the doctors sign off. While we were waiting on the doctors Casey spiked a fever and a very high heart rate. We were so worried they would come in and see it and decide she needed to stay again. Finally late this afternoon they came by. The fever had broke when they got there and was on it's way down. Luckily the doctors did not freak out.

Casey has to do BiPAP at home every night for 10 hours. In addition she has to have breathing treatments every4 hours. We go back a week from Monday for a follow up xray. As the xray improves (at Casey's speed) we can start to cut back on stuff. We just have to watch and see how she does. I really hope that she can get off this machine soon.

The good news is that while she needs night BiPAP we will be able to get a night nurse a few night a week. We have never had night nursing before. We don't really know what to expect.

For now Casey is eating 24x7 as well. This means we go back to how we did food when she came home from the NICU after she was born. We can only put in 4 hours at a time. So, every 4 hours we have to get up and get her food. The night nurse will help with this too.

We have a lot to do, but it is so much easier to manage all of the work at home. The next few weeks are going to require a lot of adjusting. Once we get used to all the new stuff at home I am sure it will fall into place.

We will keep you posted as we make progress at home - we hope everyone is well!

Good Stuff

2009-12-02T11:37:00.000-08:00

Casey has had a few good days in a row now. The doctors have mentioned being able to continue her positive pressure machine for her lung at home. Just the mention of the word "home" is what we have been waiting to hear - we obviously don't have a date yet, but we are getting there. I know we are all so ready to be out of here as soon as possible.

Casey spiked a high fever a few days ago so she has been on antibiotics. The cultures are still negative so they are thinking the fever was not related to any kind of infection. They are planning on stopping the antibiotics tonight (midnight is her last dose). They are also going to try cutting back on her methodone pain medication again.

Feeds and xrays are about the same. No big steps forward no big steps back. She is maintaining her feed rate, but still has some loose stools and sore rear end. Her xrays are still very cloudy, but slowly opening up.

Casey has been on room air (no oxygen tube) for a few hours now and is doing well. Hopefully she won't need to wear the nasal cannula any more. She has been doing really good sitting in her chair too.

We want to say thank you so everyone for all of your thoughts and prayers over the past few weeks. Also, thank you to all of our family and friends who have been helping out feeding the fish, getting the mail, running errands, bringing us food, etc. We really appreciate everything.

We will post more soon. Hopefully we will be able to post an ETA on getting out of here soon. Keep everything crossed for us :)

Hard Day

2009-11-29T20:19:00.001-08:00

Friday started the weekend out so well. We got the call to cancel the bronc, then we heard her xray had shown some improvements. Then Saturday and Sunday the xray stayed pretty much the same. We were hoping to back off a few treatments, but that has not happened just yet.

Last night around 3AM Casey's nurse woke me up to tell me Casey had a big poop. We had the RT come in so we could turn off the bipap (she is still on bipap 10 hours a night). He got her shut down, and we got her all cleaned up. From 3-6AM she had about 4 more runny poops. Each one got her a little more upset than the one before. We would get her out of the mask, clean her up, then get her back in (suctioning all along the way). She was scheduled to come off the mask at 7AM. We tried so hard to make it. Casey was having a really hard time on the mask being so worked up. We called the RT in and got her off the mask around 6:30. After about 20-30 minutes with a lot of suctioning, diapers, and positioning she was back to where she needed to be.

As I got some much needed sleep Tim and Casey hung out all morning. She was doing pretty good. She had her breathing treatments and the poops seemed to have stopped. I got up around 11 and pitched in. She really had a good morning and afternoon. She sat in her chair a while. Some of the staff brought in some music for her to listen to as well. Aside from the 3-7ish start the day seemed to be going pretty well.

Out of nowhere around 4 Casey started to have a really hard time. Her heart rate was climbing fast and she was really uncomfortable. Her nurse gave her tylenol, motrin and her pain medicine. With all of that Casey still continued to get more and more worked up. They took a temp and she had spiked a 103 fever. They took some blood and urine collections. They also started her back on a couple antibiotics. She went from having such a good day to being just miserable so quick. It took us until about 8PM to get her temperature back under control.

Hopefully the collections will give them some idea of what caused the fever. She is comfortable now so that is good. She just got settled in for the night. The bipap is started and she appears to be nodding off. We are really hoping for a better night tonight.

Plan E?

2009-11-27T06:27:00.001-08:00

What a crazy few days we have had. We do have good news- Casey is NOT going for surgery this morning. She was scheduled for a 9AM broncoscopy. She was all prepped and ready to go. Then last minute they said wait, it may not be necessary.

The increased bipap pressure night before last helped a tiny bit, but in the right places. Last night we went up again in pressure and added the nasal trumpet. Casey did not seem to mind it much, but the bipap mask was a really difficult fit around it. The xray showed a little improvement this morning as well.

Pulmonary came in to show us the xrays a few minutes ago. There was enough improvement to determine that the surgery would not be beneficial. However, she still has some work to do to get through the rest of the collapse. We are going to keep her on the increased bipap pressure over night (no trumpet) and continue aggressive respiratory treatments though out the day. Later this afternoon we will head over to xray to get a better upright image.

The bipap mask is giving Casey a bit of a rash. There is a wound care specialist here that is supposed to come by sometime today. She should be able to help us resolve the current rash as well as set up a plan for future rash prevention. This will be great if we end up going home on bipap.

We are working to wean Casey off of her major pain medications as well. I think with her lung improving some, her pain has gone down a lot. She seems much more comfortable in the past couple of days. They are giving her methadone so she doesn't have morphine withdrawals.

For now we just stay the course. Casey is taking baby steps, but they are in the right direction. We will post more as we progress with this plan.

Plans B, C, and D

2009-11-25T13:04:00.000-08:00

We had another care coordination meeting today with the doctors, but it was much smaller than last week. This is mostly because Casey's feeding is going well and that's one less thing to talk about. However, her lung continues to be a real problem that is not responding to treatment. Casey has looked a little better the last couple days (heart rate lower, moving more), but she is also on a lot of drugs like morphine that help her pain but hurt her breathing. The longer her lung remains collapsed, the more likely it can't be inflated at all.

There are three things we can try before considering more drastic measures such as intubation / ventilation. First, we will increase the pressure on her mask / BiPAP treatment, in case her natural upper airway obstruction isn't letting all the pressure through to the lungs. Second, we can try something called a nasal trumpet, which is a shunt fed from the nose to the back of the throat. It is meant to maintain a better airway during treatments, but placement for Casey will be very difficult. Our third and final option before intubation is a bronchoscopy, where a line is fed into her bad lung to look for and clear any mucus plugs or other obstructions preventing inflation.

We need to give each option about a day to see if it is working. We get an xray early every morning, so we will know right away if the collapse is improving with each option or if we should try the next one. If things don't improve with all three, we will be re-considering intubation over the weekend. This is hard for us, as Casey's anatomy makes it progressively harder to extubate with each procedure and as she gets older.

We also got the results of the abdominal and chest CT scan from Monday. Surgery is officially off the table right now. Even if Casey's lungs were healed, her anatomy and organ size/positions create way too much risk. The result doesn't surprise us, but it is easier to take since her GJ tube seems to be doing it's job so far.

Thanks to Cappy and John for bringing us lunch today and visiting with Casey. Another meal outside the cafeteria makes us very happy!

Rollercoaster

2009-11-23T20:35:00.000-08:00

We are up then we are down, then up again, then down again. So stressful. Last Wednesday Casey had a wonderful xray. Then Thursday it looked collapsed again. Casey worked hard all weekend. Each day her xray looked a tiny bit better. On Sunday her xray looked a lot better. We expected this mornings xray to be awesome. We were all shocked when we heard it has gone back to collapsed. We will see what tomorrow brings.

Casey has been slowly going up in her food rate. The target is 25cc/hr. She is on 21 right now. They are going up 2 every 4 hours. She should be at her goal rate by morning. This is pretty big. Once she can get all her nutrition via tube we can stop some of her IVs. The only IV she will have left will be her morphine.

Casey had her CT done late today. We expect to hear the results some time tomorrow. There is talk (nothing planned yet) of another care conference before the long weekend. The plan is to get everyone back together to review all the tests/procedures from the past few days. Then we should be able to really set out a good plan for moving forward (both long and short term plans).

Right now the focus is still on her lungs. Other than the care conference there is not much more we will have this week. We expect it to be pretty quiet up here for the holiday.

We hope everyone has a wonderful holiday weekend. We will post more as we get results and plans.

Day Off

2009-11-21T12:34:00.000-08:00

Casey has been pretty busy. She has had 3 procedures in the past 3 days (PIC on Wed, Upper GI Thur, and her GJ placed yesterday morning). All 3 were hard on her. She did great though. Tim had to step out but they let me stay with her for the GJ. It took a while. She stayed really calm the entire time. There was a little bit at the end where she started to get worked up. I did not realize it then, but soon found out it was poop not the procedure.

Since we were gone in the morning to get her procedure done her daily chest xray ended up being really late yesterday. It was so late that the doctors never even came by to talk about it. We did track down someone that took a look for us. It was pretty much the same as Thursday. We were hoping it was going to be more like Wednesday's improved image. This morning they came by and took an image around 5AM. Again, it looks pretty much the same.

We are spending the weekend just focusing on breathing treatments and respiratory interventions. Hopefully we can see an improved lung by Monday. Until then they are not rushing the CT scan.

We were expect the CT to be done on Monday. This would have given us 2 days to get GI and Surgery together to talk about the findings. However if they put it off until later next week we may have to wait until after the holiday weekend to really talk about it. Casey would get more recovery/rest time so maybe the test would end up going better that way. I don't know. Part of me really just wants answers. The other part does not- the part that knows there are some serious decisions that come after.

Casey is resting right now. She had a pretty tough morning. Something was bothering her. We have no idea what it was. She started feeding (very slowly) in her J port last night. It's possible some of this mornings issues were related to digestion. It could have been pulmonary pain too. So hard to know.

Sanjoy and John came by to see how she is doing. They brought us lunch too (yum!). We have been so burnt out on take out and the cafeteria here. We were so excited to see home cooked food. Thanks John & Sanjoy (and Aruna who had to stay home sick).

The next couple of days we may not have much to post. As we make progress on her lung and get closer to the CT we will let everyone know. She may start getting a little non-aggressive bedside PT and OT today or Monday too. It will be nice for her a little range of motion and stretching in.

Upper GI & More...

2009-11-19T12:44:00.000-08:00

Casey had a pretty rough night and morning. She seems to be having some tummy issues. She HATES poops. She usually has just one a day. Between 8PM yesterday and noon today she had 5 or 6 (a lot for her). each one got her a little more worked up. Between that and the aggressive pulmonary/respiratory stuff she was not a happy girl. Sadly, a bad night and morning were reflected in her xray today. It is not as bad as it was before, but it is worse than yesterday. The doctors are worried that she is headed back in the wrong direction. The respiratory treatments have been stepped up a little more today. Luckily they worked it so that she gets them all at once now and then gets a break in between.

Casey is resting now. She was up all night. Shortly after lunch she finally started to settle down. She seems much more comfortable now. Of course at the height of her discomfort is when all the doctors come by, but what are you going to do. It seems like everyone showed up at the same time today too. She had the xray tech getting the last GI picture, a bunch of doctors, respiratory therapists, her nurse with medications, some people from PSA (our home nursing agency) and a big poop. To top it all off- this happened 10 minutes after Tim left to go pick up something for us to eat. It was a crazy in here for a while today.

At 8AM Casey had an Upper GI with bowel trace done. They put some barium in her tummy and took lots of pictures to see how everything is working down there. Of course with an already upset tummy this was not the smoothest nor easiest procedure. She got through it and we were able to stay with her the entire time. The doctors just stopped by to discuss the results. Casey refluxed almost immediately when they gave her fluid. This makes the doctors very weary on feeding her through her tummy. They were talking about trying to give her some food in her gtube over the weekend. Now they do not feel that is safe for her (especially with her lungs already weakened).

It looks like we may be placing a GJ tube in the morning. This will allow Casey to get some food. Instead of going into her stomach it goes in at a later point of digestion (the Jejunum aka small bowel).

We still need to get a CT scan done of Casey's abdominal cavity. We have to wait for the barium they gave her today to fully get out of her system. Ideally we would have preferred the CT first then the GJ but it looks like the barium has changed the order a little for us. Our current plan is to get the GJ done tomorrow. Then use the weekend to continue to make progress with Casey's lungs as well as to slowly start feeding her. Then Monday we should be able to get in for the CT. After the results of the CT we will sit down with GI, Surgery and probably a few others to discuss our options, risks, benefits, etc. I am sure Tim and I will need to sit on that information for at least a day or two. Hopefully we will be able to make the decision next week and then start working toward what ever it may be. Of course, if anything should come up over the weekend this plan could change completely.

They took some of Casey's tummy contents to the lab. They are checking her acid levels. She has been on antacids forever and they want to see how effective they are. They just sent the sample off so I have no idea how long that test will take. I am not sure how much of an impact this will have on the big picture. It is nice to see if we are over/under medicating her though.

Casey had a surprise visitor today. Her Water Therapist, Margaret, came by to say hello. It was really cute. Casey was just laying here half asleep half awake. When she heard Margaret say hello she perked up and threw up her hands to greet her. I think Casey misses the pool :(

We will post more tomorrow after the GJ is done. As always, thanks for keeping our little princess in your thoughts and prayers.

Moving Forward

2009-11-18T07:00:00.001-08:00

Casey had a good night. They started her on what is called BiPap. This machine is designed to force pressure into her lungs on every breath. She started this yesterday (2 hours on 4 off). In addition she was getting VERY aggressive breathing treatments.

This morning they came to take the usual morning xray. All of the doctors, nurses, therapists, etc came by to tell us how happy they are. Casey made a lot of progress last night. They feel that her left lung has finally opened back up. They actually compared it to some old xrays she had taken a while back and say that this current one looks better than her previous baseline. Yah!!! We were hoping for some good news today.

Casey is still getting te BiPap (3 hours on and 3 hours off now). They have relaxed a little on the breathing treatments. I imagine that if tomorrows xray looks good they will start to back off on BiPap as well.

Shortly before lunch Casey went to have her PIC line IV repaired. They did not have to poke her again, but they did have to do quite a bit of work. She was gone for about an hour and a half. She did really good. Her nurse and respiratory therapist went with her (we were not allowed). Now that Casey's PIC is in the correct spot she can started getting her nutrition again. She has been on maintenance fluids for the past couple of days.

Tomorrow she is scheduled to have an Upper GI with bowel trace done. This is the first in a few test that we will be doing to get a better picture for the way we need to approach/correct the pain and feeding issues.

We will try to post more tomorrow after the PIC. Thanks again for everyone's kind words, thoughts & prayers. Keep them coming :)

Closer to a Plan

2009-11-17T17:46:00.000-08:00

We had a big meeting today with the entire team taking care of Casey - GI, pulmonary, palliative, ICU, nursing, surgery, etc. We asked a friend of ours to sit with Casey so that we could both participate in the meeting (Thanks, JH). There were about 15 people in a conference room going over our options, of which there are only two. Although both of these are to fix her problem eating, we primarily have to consider potential increase/decrease in overall pain, as well as risk to her lungs.

One option is to place a tube below Casey's stomach (in the jejunum part of her intestine), so her food bypasses the stomach. We tried this at UCLA once and it didn't work at all (actually put her at greater risk of pneumonia). However, our situation has changed now as without it we may have nothing, since it is too painful for her to eat with her stomach right now. So even though we really don't think this will work the second time around, we may still try. Casey's anatomy is much more complex now, which leads us to believe there is less of a chance that it will work, but we still need to consider it. The doctors have ordered some tests (such as an upper GI with bowel trace) to make sure she is a candidate in case we do need this option.

The other option is to fix the surgery Casey had when she was 1 month old, as well as repair the large hernia she now has at the border of her chest. This would be a serious surgery, but a successful outcome would mean she could still use her stomach and not reflux into her lungs. We should also be able to feed her at a higher rate / fewer hours per day. Unfortunately, she has some anatomical problems (like the progressively worse shape of her chest) that may not make surgery reasonable. Like the first option, there are some tests that need to be done to confirm if she is a candidate (such as a CT scan).

Even with the tests above, our primary concern continues to be Casey's lungs - she has a number of respiratory treatments around the clock to address her lung collapse. The xrays have looked about the same for last few days, but she seems to be breathing a little better, so we are hoping tomorrow's xray will finally look better. While we are focusing on her lungs, we still need to line up the tests above so we are ready to go with one of those options when the time is right.