Spring Break

Last week was Spring Break.  Casey wasn't feeling well for most of the week.  We did a more accurate culture on her respiratory issues and started some new medications last week.  She is getting an antibiotic as well as an inhaled antibiotic to try to help get this crud out of her lungs and her lungs back open.  The good news is that the drugs do seem to be helping, the bad news is that in order for them to help she does have a few bad days as she starts to clear the stuff out.  By Friday though she was able to be off of the oxygen some during the day.

Casey's Girl Scout troop went to see the new Cinderella movie Friday morning.  Casey was so excited to go hang out with her friends.  She LOVED the Frozen short, then fell asleep for the first half of Cinderella.  She did wake up in time for the ball though (that is the only part she really cares about anyway since this version didn't have singing).  The battery on her suction machine was not cooperating though so we had to head out as soon as the movie ended.  She wasn't happy about not getting to hang out with her friends like she had planned, so we stopped for ice cream on the way home to make up for it.  Once we got to the car we could plug in for power.  We stopped at Sonic and she and I split a chocolate shake.  She is so much like her daddy- she LOVES ice cream.  In the picture, she is hanging out in the car enjoying her shake (it's hard to tell in the picture so I thought I would explain).

On Saturday she was in a pretty good mood.  One of her nurses was coming over so Tim and I could go out and Casey was very excited about having a fun night with her nurse.  They did some Easter crafts and watched some movies.

Sunday morning Casey was not great, she took a little step back and was needing more respiratory help that the few days before.  We were able to get her off of oxygen around lunch.  A little friend of hers that lives next door invited Casey to get a pedicure with her at a nearby salon.  When I asked Casey if she wanted to go, she gave me a very strong YES!  We met our neighbors at the salon and Casey had a great time.  She got the entire experience with the foot/calf message and all.  Her friend picked a hot pink polish that they both used.  Her friend had actually just gone to the movie that morning with her mom and came very well dressed in her Frozen dress.  She and Casey are both total divas and get along great.

We are starting to plan Casey's birthday.  I still can not believe she is almost 9!!!!  We decided to get another Icing Smiles cake this year.  She had her dream cake a few years ago (the amazing My Little Pony cake).  This year she will get a fun cake.  They just confirmed her baker yesterday.  It's kind of cool how it works.  You put in your child's information on an Icing Smiles form.  Then if you qualify they have regional people that start contacting bakers in your area.  Then a baker will volunteer to provide the cake.  Casey's cake will come from Not Your Ordinary Cakes this year.  I am really excited to see what she comes up with.  This year her theme is Spring.  Lots of flowers, pink, purple, butterflies, all the girly stuff Casey likes.

We are still working out a date to go meet with anesthesia about potentially getting Casey's CT done.  There is not much to update in that area right now though.  When we know more we will share.

Mommy's Day Off

I occasionally take a few hours here and there for myself.  I may grab a long lunch with some girlfriends, catch a movie, get my hair done, I have even been able to join friends for the rare evening out a couple of time.  Usually I am gone for a few hours at the most.  I typically have to get back to relieve the nurse if Tim is working, or relieve Tim if he is on Casey duty.  I decided that Sunday I was going to take more than a few hours and instead I took an entire day for myself.  Granted, it took a lot of planning, but it was a great day and just what I needed. 

Tim and I just have the one car- the wheelchair modified minivan.  Since I was going to be gone all day I didn't want to take our only car (especially if he needed it for Casey while I was gone).  We rented a little car for me to have so he could keep the van.  We scheduled a nurse to come in for most of the day so Tim would still be able to get his stuff done too.  Tim picked up the rental car Saturday (thanks to a friend that was nice enough to take him to the rental office). 

If anyone is looking to rent a car, do NOT use Hertz.  They made a mess of our reservation.  Tim ended up going down the street to Enterprise and we had MUCH better service there.  From now on Enterprise will be our first call when we need to rent a car. 

On Sunday I got up bright and early and hit the road for Dallas around 6:30.  The weather was awful, but luckily the roads were just wet, not frozen.  I went to visit my baby sister and her family first.  She is a surrogate for a family and VERY pregnant with twins right now.  She has been on bed rest for a few weeks now.  I am so proud of her for doing such a wonderful thing and was excited to finally get to see their "new" house.  I say new, but they have been there for over a year now.  Lucky for her, Casey saved a couple boxes of thin mints just to get her over the hump until these babies get here. 

After a short visit with my sister I drove into downtown Dallas to see my sister-in-law and my niece.  It had been around 5 years since I last saw them.  When I found out that Allie would be performing in Dallas for a dance competition I really wanted to find a way to get out there to see them. 

I spent the afternoon watches dance teams compete, and I got to see my niece, Allie, dance.  There was some really great performances.  I felt like I was watching a live taping of America's Got Talent.  Allie's team did great in both of their categories, but nailed their jazz dance.  I really thought they had won that one, but I was still pretty excited when they came in second (they won in my book). 

 Between performances I was able to catch up with Jen, my SIL.  Since the first time I met Jen she and I just clicked.  She's one of those people that I can always count on, and whether it's been 5 days or 5 years, we can just pick up right where we left off.  After all of the performances were completed I stuck around and joined the team for dinner.  I was able to spend a little more time with Allie too.

I considered staying over since I knew Casey was in good hands at home, but if I stayed I would have had to get up really early to get back to Austin in time to return the car.  I am used to staying up when night nurses call out and my wall is 4-4:30.  As long as I left early enough to be home before 4 I knew I would be fine.  Around 11-11:30 I took Jen and Allie back to their hotel and hit the road back to Austin.  I got home around 1:30 and had a really easy drive back. 

I know it will be a while before I take another day for myself, but I really had a great day visiting family yesterday.  The best part was that when I got home, Casey was sound asleep and looked great.  She had a good day.  She and Tim even got to play some guitar.  She loves to rock out with Daddy. 

This morning I took the car back (again, thanks to a wonderful friend that was nice enough to pick me up) and now it's back to my normal routine.  There was a nasty accident on the highway this morning that I totally would have gotten stuck in if I had driven back this morning too.  Casey has a few appointments this week.  I will try to do a medical update post sometime by the weekend.  Until then, we hope everyone has a great week and that the dance team has a safe trip back home to Indiana.

Tiny Dancer

Casey had her 3rd dance recital on Sunday.  I can't believe she has been my little dancing princess for 3 years now.  I can't believe she is turning 9 this April either!  The time has gone way too fast.  Last year the dance recital was kind of a disaster.  Casey was not doing well and then when we put her in a loud crowded room she had a huge meltdown.  She had an audience full of people to cheer her on and she basically rolled across the stage then straight back to the car and home.  She missed trophies, she didn't see any of her guest, it was just a mess. 

This year we planned for the meltdown.  We set up a little spot in a quiet hallway just for her.  She was able to relax and have limited stimulus before getting in costume and going on stage.  We then slowly got her ready and loaded into her chair just in time to take the stage with her group.  She did great.  After her performance we kept her in her dress but went back to her quiet spot for a little break.  As the show was wrapping up (we could hear the music from our spot) we got her backstage so she could go back out with the group to get her trophy.  Everyone goes out at the end together.  It gets loud and a little hectic so she started to get worked up while on stage to get her trophy.  As soon as she came back off we did all we could, but the meltdown was underway.  She made it to the end though, so it was MUCH better than last year. 

A cold front came through while we were there so it was really cold when we left.  We changed Casey out of her dress and into comfortable clothes then ran to the car.  By the time we got her home she was in full meltdown mode.  Her heart rate was really high and she was not breathing well.  We got her some oxygen and medicine and tried to get her to calm down on the couch while we got her bed ready.

My mom, her husband, my grandpa, my sister and her friend had come back to the house with us to celebrate my mom's birthday while they were in town.  Casey wasn't feeling much like celebrating so we got her to bed as quick as we could.  Once she settled into bed she started to look a lot better.  The past few days she has been sleeping a lot and recovering from her big day.  It's a hard balance.  She loves dance and we want to find ways for her to do as many fun things as we can.  Each thing is always so hard on her though.  There is always a price to pay and finding the balance of when to do the extra stuff or when to skip it is really hard.  I talk to a lot of other moms with kids like Casey and they have the same balance issues.  Unfortunately there is not an easy/obvious answer.  We have to just trust our gut instincts and plan on recovery times after special events.  We try to plan ahead with quiet areas and things like this as much as we can too and that helps.  It's just so hard to know when to be the over protective mom and when to just go for it. 

Hopefully with a few more days recovering she will be feeling much better.  Each day she looks a little better than the day before, so we are going in the right direction.  Here are some pictures from the show.  I'll do another post in the next few days with medical updates and any other stuff I left out of this post.

Casey's Performance

Trophy Time

Casey's Group on Stage

Casey Before the Show

The Hair/Tiara

My 2 Favorite People

So Many Things...

The Fun Stuff:

Casey is wrapping up her Cookie Sales.  She is the top seller in her troop.  She kind of has an unfair advantage though- there are a lot of people in her care circle that were all more than happy to buy cookies from Casey.  We are down to our last 5 boxes!  When she is all done she will have sold 230.  That's pretty impressive.  There are some kids that have goals of 1000+.  That is way more than I think we could handle.  Casey had fun selling, but I am pretty glad we are wrapping things up.

Casey has been practicing for her upcoming recital.  She got her recital dress yesterday.  It looks like a Cinderella gown.  She is going to be so beautiful- as always.

Casey has been working hard getting ready for Valentine's Day.  She made a fancy box with her teacher and has been making crafts for Daddy and me as well as little Valentines for her friends in dance & Girl Scouts.  She loves any excuse to do arts and crafts.

It has been pretty warm over the past few weeks.  She has been in the pool twice and out on her swing every chance she gets.

Since Casey is in 3rd grade now- WOW!  She has to take the state test this year.  It is of course modified for her, and instead of a timed test one afternoon she will work with her teacher to take it over the next few weeks.  It's not really pass/fail but more of a complete that she has to do.  Her teacher assures me that Casey knows the content, it is all about finding days when Casey will respond to let her know she knows the content.  I have to be nearby to come in and suction Casey as needed (or a nurse does), but there are some funny rules about us not knowing what is on the test.  So don't ask, I won't know and even if I did I could not tell you :)

The Medical Updates: 

It feels like the last 6 months are so are just a blur.  Casey has been growing so much and everything keeps changing.  As soon as I think I have one thing figured out she throws something else my way.  I am never bored though, I can say that without a shadow of doubt.  I can say for certain that I learn something new everyday too.

I mentioned in the last post that Casey's ENT was a little concerned with her cholesteotoma being more active than it has been in years past.  He wanted us to bring her in if we saw any drainage or signs of infection at all.  Of course, he takes the following week off and Casey gets a nasty infection.  We saw one of his partners and got Casey all cleaned out and back on her medicated ear drops.  The doctor that we saw suggested/ordered a CT scan of Casey's head.  A CT scan generally is not a huge deal.  However, for Casey it is.  She can not be positioned in a way that radiologist need her for this type of imaging.  Trying to move her around getting her as close to this position as possible gets her really upset.  The more upset, the more secretions, the more suction, and the higher risk for aspiration (that often leads to additional respiratory issues).  We have to stay with her at all times to manage her airway as it is very complex and not something that radiologists are generally prepared for.  The next option they offer is to bring in anesthesia and sedate Casey for these types of treatments.  That usually goes even worse- the details on all the ways that goes bad are way too much to type up for this post.  So even though in theory a CT scan is minor- for Casey it is still a huge deal.

We had to get labs drawn for her GI bleed recently.  We had to go the 3 labs on 2 different days.  8 needle sticks total- 5 on the final day.  There were 4 different techs that attempted to draw blood.  Due to Casey's physical changes the more she grows the harder and harder getting access to her veins has become.  We lost the ability to get peripheral IVs placed over a year ago.  Now any IV needs to be placed using an ultra sound (by the PICC team in the hospital).  It is looking like her blood draws are going in that direction now too.

We are still dealing with lots of respiratory issues over the past few months as well.  She's good one day then awful the next.  We are needing a lot more oxygen and respiratory aids than before.  Her left lung had a partial collapse around the new year.  We saw pulmonary yesterday and the collapse is either still there or back.

It's really hard to know with Casey what issues can be addressed, treated and/or fixed and what issues are part of our new normal.  We saw her palliative doctor last week and brought all of this (and more) to his attention.  We don't have a date yet, but sometime in the near future we will get palliative, pulmonary, ENT, GI, neuro and Casey's pediatrician together for what is called a care conference.  Tim and/or I will also be there and we will take a team approach on "what's next?".  I wish it were easier.  When we try to work on one thing something else usually gets worse.  No matter what she has going on, each little thing triggers break through seizures (heck- even bad weather can trigger seizures).  She is showing more signs of puberty now too- which is just one more complication to factor.  

We have known since very early on with Casey that some areas will improve.  She will have more and more personality, her cognition and social interactions all improve every day.  However, the big system issues (lungs, digestive, neuro, muscle/skeleton, etc) will continue to get worse.  Some years they only degrade a little, but some years she takes bigger hits and the changes are hard on everyone- especially her.  I hope that we can come up with some non-invasive ways to help her at the care conference.  I worry though that there are not a lot of options and that some of these "issues" are not actually issues, but just more Caseyisms.

We hope everyone is doing well.  Thanks for everyone's continued well wishes, prayers and support.  We can't say thanks enough for the amazing support system we have.  We are very fortunate.   Since we do not have a date for the care conference, I am not sure when/if we will have a lot to update on her medical issues in the near future.  We will have pictures and updates for the upcoming recital, Valentine's GS meeting, and more fun stuff to post soon.

Caseyisms, Cookies and More...

Casey's lung seems to have opened back up after a round of antibiotics and some time on bipap.  She is still doing some crazy stuff and needing oxygen more than before, but we are not sure if it is really a sick thing or just her getting bigger and her body needing time to catch up. 

We deal with the GI blood every few days, and it has oddly become a new normal routine for us.  Last week she had a little more and fresher than usual so we are going to get some labs and make sure that while her body was fighting the lung issues it did not fall behind in replenishing her blood cells.  We see her pulmonary doctor this week as well to talk about her lungs and breathing overall.  I'm not expecting many changes, but I will feel better if I can confirm we are doing all we can.  Casey has some ear issues that we are watching closely right now as well.  She has had a cholesteatoma for years now and it has been pretty stable.  Her most recent ENT appointment was the first time the doctor seemed a little concerned with the activity he saw.  We go back in a few weeks to get it checked again.  Hopefully it was just a fluke, but as she is growing so much things just keep changing.  Her head shape has changed some too.  One of our friends was over and we had her feel it since she is a doctor.  She said she sees it a lot in the older patients she treats that have brain injuries.  We will keep an eye on it for a while too.  It doesn't seem to be causing any issues, it's just a weird change in her head shape.  We refer to odd things like that as Caseyisms.  I told her doctors we need to find a way to get that added to the medical books as an official diagnosis. 

Casey's girl scout troop (or Daisy troop to be exact) started selling cookies on 1/21.  Casey sold some to her family, nurses, therapists, etc and she is going to try to get up to her doctors offices this week to sell to all of them.  Her doctors and their staff are all pretty excited that Casey is a girl scout.  I'm sure she will be able to sell quite a few boxes.

I am the cookie mom for our troop so that has been keeping me extra busy.  It's not bad though, and it's totally worth it since this is something that makes Casey happy.

At dance last week it was a beautiful day and the girls were all being so silly.  Casey and Jenny were chatty as ever, and I think the warm weather just made everyone in a great mood.  Casey got some wild unicorn pants for Christmas that she wore that day.  We are calling them her fancy pants.  We are not sure if it was the fancy pants or the weather, but she had a blast at dance last week.

One of Casey's friends from dance had a birthday a couple of weeks ago.  Casey went with the birthday girl and her sister to see Annie.  I have to admit, it was pretty cute.  The original is much better, but the new one wasn't bad.  I had not planned on seeing it at all, but the birthday girl picked the movie.  Casey started out great, but had a little melt down in the middle.  We had to take her out to the lobby to calm her down, then instead of staying in her wheelchair she finished the movie on my lap.  She loves hanging out with her friends, and once she calmed back down it was a nice afternoon out of the house.

We hosted our monthly game night on Friday.  Casey slept all day then around 4 she woke up and was ready to play.  She yelled at us for a little bit because she thought she would wake up to a house full of her friends.  When she realized she still had to wait an hour she wasn't happy.  All of her friends finally came over and she played so hard that she wore herself out before 8pm.  She doesn't have a lot of energy lately, but she tries so hard. 

Casey had a play-date on Sunday with a little girl that lives next door.  Her friend painted Casey's fingernails and they made bracelets and had a tea party.  It was great fun. 

Casey is getting ready for her dance recital and selling as many cookies as she can.  She has a birthday party this weekend that should be lots of fun too.  It's about as girly as they come- right up Casey's alley.  They are all going to a kids salon to get hair and nails done.  I am sure we will get some good pictures to post soon.  Until then, we hope everyone is doing well.  If you need to order cookies, let us know :)

Happy New Year

We did not finish 2014 quite as strong as we had hoped.  Shortly before Christmas Casey seemed to be coming down with a little cold.  She was having a lot of heart rate issues, breathing issues, thick sticky secretions and needed oxygen and pain medicine quite a bit.  On Christmas day she seemed to be feeling a lot better so we hoped that what ever it was had passed.  Sadly by the next morning she was not looking very good anymore. 

Holidays are usually pretty lightly staffed around here.  Most of our nurses have their own families and traditions so they take off for the big holidays.  It's hard when we don't have much help, but we totally understand.  If the tables were turned I would take off the holiday to be with my family too.  When Casey is sick and we are short handed it can be a little stressful- especially when we add holidays to the mix.  We managed to get through Christmas week okay, tired, but okay.

Casey had a pretty good day the Sunday after Christmas.  Some friends came by and she was excited to play with her new toys and her friend.  Again, we hoped that was a sign that she was over what ever this was and that we were moving in the right direction.  Wrong again!  Monday morning she was back to being miserable.  She never ran a fever during any of this time, she just looked miserable.

On that Tuesday when she was still a mess we decided it was time to get her doctor on the phone.  We took her in for an xray on that Wednesday expecting that she had a pneumonia.  Her secretions were really bad so it made sense that she could have aspirated and gotten a little in her lungs that developed into a pneumonia.  The xray showed that her lower left lung had atelectasis (partially collapsed). 

Atelectasis explained the need for pain meds and the  breathing issues.  We are fairly sure the thick sticky secretions are what triggered everything to start.  A few years ago this would have become multiple weeks (or more) in the hospital.  Luckily we have set up our home to handle stuff like this now.  We put Casey on bipap to push some pressure into her lungs and help to open them back up.  We have to use bipap at least once a year.  Casey hates it, but it helps a lot when she needs it.  The first round she did great.  When she just lets it happen and doesn't fight it we know she needs it.  About half way through the second round (the next day) she started yelling and trying to get out of her mask.  This is actually a good thing.  When she is feeling stronger she is able to fight it and that helps us to know that it has done what we needed it to do. 

She is still needing oxygen off and on, but at a much lower setting.  Her pain seems to be much better managed now too.  She even tried to cooperate when her teacher came in today.  She started an antibiotic on Wednesday (New Year's Eve) and we think it is helping.  Hopefully by the time she finishes up her 10 days on antibiotic she will be back to her usual spunky self. 


She got all kinds of new toys, books, nail stuff, art projects, etc. for Christmas and she hasn't been up for playing at all.  I'm sure once she is up for it she will have lots of playing to catch up on.

Shortly before Christmas my grandpa went into the hospital with pneumonia and Flu A.  He spent about a week there.  It was sad that he wasn't able to join us for Christmas this year.  I am glad he is out of the hospital and doing much better now though.  We had the house on lock down while he was sick.  Everyone that went to see him had to change and disinfect when they got back to our house.  With everything else we had going on, we were not about to add the flu to Casey's list of issues. 

Girl Scout cookies are on sale 1/21.  Hopefully Casey is ready to go by then- she has lots of sales to make.  We hope everyone had a great Christmas and a Happy New Year.  Here is to 2015 being filled with good ealth, love and happiness. 

SANTA!!!

Casey has had a pretty fun weekend so far; definitely a great start to her Christmas break.  Last night we went over to some friends for our monthly game night.  The kids drew names for Christmas presents and it was early enough in the day that we decided to take Casey with us.  Usually she stays home with her nurse, but she was so excited to go to her friends' house for a Christmas party.  She was having a great time just being around her friends.  Then, to make it even better, she got a present full of 'My Little Pony' stuff.  By the time she got home and to bed to she was wiped out. 

This morning Santa came through the neighborhood on the back of a firetruck.  We expected him around 10 this morning.  After Casey's morning medicine and routine we got dressed and then headed to the garage.  She invited a few friends from the neighborhood to come over and wait for Santa with her, and while we were outside a few other neighbors along the street came and joined us as well.  Santa's 10AM arrival ended up closer to 1PM, but we all had a great time waiting.  We made some cocoa (it was a little chilly here today) and the kids all had a great time playing together.  We ended up ordering pizza for lunch too since everyone was getting hungry.  We can not say enough how happy we are to have moved to this neighborhood.  Days like today when we get to spend time with our wonderful neighbors just remind us how much we love it here.  Casey especially, she is just one of the girls here with her friends. 

Here are a few pictures from today.  Casey had so much fun.  I love that the fire department does this for the kids.

Holiday Fun

Last weekend Casey had a really fun day.  She was working on her gingerbread house that she was really excited to do when some friends from the neighborhood stopped by.  She loves to hang out with all her girl friends.  They helped her decorate the house.  Casey had a great time.

Later some other friends came by.  While they were here they all made ornaments with letters to Santa.  The ornaments came out really cute.  After crafting they all sang along with Casey's karaoke machine.  They put on quite the show.

This weekend Casey had a lot of fun too. I was busy with a special project with Mommies of Miracles.  While I was gone she and Daddy had a great time.  They played guitar, snuggled, watched movies and pretty much did everything Casey wanted to do.

This coming weekend she has some fun stuff planned.  Hopefully she has a good week and maybe we can finally get that family Christmas picture.

Latest Updates

Christmas is right around the corner and I feel like Halloween was just yesterday.  I used to be so on the ball with everything, ahead of schedule, I never missed a beat.  Lately I feel like I run and run all day long and never catch up.  Oh well, me and 99% of the country I think feel that way.

Thanksgiving was nice.  Tim's mom and brother came in for a few days.  It had been a while since we saw them last so it was nice to catch up.  The last time they saw Casey was shortly after her last surgery.  At that time she was a puny 28 pounds.  I am pretty sure she has passed or is really close to the 50 pound mark now.  She has grown a LOT since Grandma Barnes last saw her. 

Casey is still having a lot of tummy issues, and we still deal with bad days, or bad mornings, so we just laid low over the holiday.  The pool was still being repaired, but Casey did get to swing some.  Her grandma got us a nice heater for the patio as a house warming gift so that Casey can swing all year now.  We have used it quite a bit.

On Thanksgiving some of my family came in for the day to join us for dinner.  Everything was delicious.  I LOVE Thanksgiving food.  Casey did great on Thanksgiving.  She was having a pretty good day and was able to sit in her wheelchair at the table with the rest of us.  It's not often we can pull that off, so it was really nice to have her at the table.  She even chatted a little off and on.

Tim finished the table just in time to use it for Thanksgiving dinner.  It came out BEAUTIFUL!!!!  He really does have a gift.  I am pretty lucky to have such a talented husband.  He entered the table in a contest for wood working.  Be sure to check it out, and vote for him.  You do have to register for the site to vote, but it's free and easy and they don't spam members. He loaded some great pictures of the table as well. 

You can find his contest entry here:
http://www.instructables.com/id/Trestle-table-with-floating-arched-stretcher/

On Thanksgiving evening I got a text from one of Casey's nurses that we miss dearly.  She and her family moved to Houston (her family is there) and we really hated to see them leave.  They visit Austin from time to time.  They were in town for the holiday and she came over with her kids (you may remember her daughter from previous post- she and Casey were BFFs).  After they moved she had a son, so we had not even met the baby yet.  Casey was so excited to see her Maritza and Makayla.  We all miss them and it was really nice to catch up.  A great surprise ending to a nice Thanksgiving.

The following Friday we decorated the tree.  Casey LOVES Christmas lights so we usually get the tree up as soon as we can after Thanksgiving.  We set it up so that she could watch and direct us from the catch near the tree by using a mirror in her line of site.  It worked really well.  There were a few ornaments she had very specific ideas about and let us know if we put them in the wrong spot. 

We tried to get a few family/group pictures around the tree after getting it decorated.  Casey was not interested in getting dressed at all.  They came out okay, but we still need to get a better family shot (with clothes on) for the holiday. 

Grandma Barnes and Uncle Larry went back to Indiana the Saturday after Thanksgiving.  Grandma Barnes has been having some health issues of her own, and was actually in the hospital shortly before coming out, and ended up back in the hospital soon after getting back home.  Hopefully she is getting some rest now and recuperating well. 

Soon after wrapping up Thanksgiving celebrations I got a really nasty bug and was down for a few days.  Just as I was able to get out of bed Casey's nurses ended up getting sick as well.  It was a long week.  Usually the week after Thanksgiving I get a huge leap on shopping, decorating, baking, cards, etc.  I accomplished NOTHING that week.  I was pretty happy to be feeling back to my usual self after a full week and did my best to make up some time last week.  I had to give up on a few things.  I don't think we are sending cards out this Christmas.  Poor Tim has had to eat a lot of take out and left overs recently too.  I feel like after this weekend I am okay on time again.  I should be able to get back to my normal schedule (at least for a few days). 

We have a few labs and follow up appointments coming up with Casey's tummy issues.  We really hope to at least have a good plan if not a resolution by 2015.  We'll let you all know as we get more specific details to share.

We hope that you all had a wonderful Thanksgiving.  We should be able to get another tummy update posted before Christmas.  Hopefully that one will have some direction and answers. 

Happy Thanksgiving

I don't know where 2014 has gone, but Thanksgiving is just a day and half away.  I love turkey!  There is a commercial for a sandwich meat talking about how if you do this or that "you may be a turkitarian..."  I am pretty sure I am a turkitarian.  I think the only one I have ever seen love turkey as much as I do is the dad from "Christmas Story" and the Bumpuses' dogs.  Usually we do Christmas as our house and my sister hosts Thanksgiving.  This year Tim's mom and brother are coming to town for Thanksgiving so we decided to do Thanksgiving here instead.  Tim has been working a lot on weekends and evenings to get the dining room table done.  He had a neighbor help bring it in today.  It came out sooo pretty!  It is going to be perfect for hosting a family Thanksgiving.

We pick up Tim's mom tomorrow and then my sisters, their families, and my grandpa will join us on Thursday.  My mom and John are out to sea this year, and my brother and his gang have other plans.  It will still be a nice gathering of family.  Casey is excited to play with her cousin Riley. 

Casey is still having a lot of tummy issues and can't seem to get over cdiff.  We saw the doctor again yesterday and he ordered some follow up labs.  We see another doctor in about a week to talk about the next step.  Until we talk with her, we don't really have enough information to share.  Hopefully we will have a new plan and some answers soon.  Listening to her tummy rumble and cleaning up these awful diapers is no fun at all- for any of us. 

Casey is loving Girl Scouts (or Daisies).  She is going to be selling cooking mid-January.  Be sure to let us know if you want to buy some so we can request enough in our supply.  January will be here before you know it.  Christmas is only a month away!!!!  I need to get moving on shopping. 

It seems that last week everything that could break, did break.  The pool cracked, the last Medela (the good suction machine) broke, the sensors on our van tires have gone crazy, and I think there were a few other small things too.  Luckily the pool guy came right out and they are working to get it fixed ASAP.  We got another type of suction machine.  It's not as light or easy to carry around, but it works and this one is covered by insurance (and available in the US without paying import taxes).  So yes, things broke, but it wasn't the end of the world.  We still have a lot to be thankful for this Thanksgiving.  We are focusing on the good stuff, and there is lots of it.  

We hope that everyone has a safe and happy Thanksgiving.  We will post more after the doctor appointment with details on what's next in the battle against cdiff (I'm not sure if it's still a battle or if we can call is a war now?). 

Halloween

Casey had a GREAT day!!!  She woke up bright and early (3AM) and had a rough start.  Some tummy issues made us wonder if she was up for her deliveries today.  She calmed down and was ready to go right on time.  Her mermaid costume was a big hit everywhere she went.

Casey is up to 16 doctors now.  2 are brand new, and 4 we only see as needed (luckily we haven't needed them recently) so we took goodies to her 10 regulars and her PT up at the hospital- 11 deliveries in all.  She was eating up all the compliments everywhere we went.  All of the doctors, nurses, staff, other patients, everyone told her how great she looked and she was loving the attention.  While I was talking to one PT Tim was talking to Casey's PT and Casey's nurse was chatting with the photographer.  After a few minutes (or seconds) of Casey not being the center of attention she quickly reminded us that this is her day and we need to pay attention to her. She is such a little stinker.

When we took her to the trunk or treat earlier no one knew she was supposed to be Boo.  Everyone knew exactly who she is today.  She got lots of stickers, some necklaces and even a little puppet while we were out.  She needed a little suctioning in the car, but for the most part she was doing great all day.


Tim is off this week and so he was able to join us this year.  I am not sure if this is our 4th or 5th year doing this, but he is usually working and just hears about it after we get home.  He was pretty excited to be able to go with us.  He saw how much she loves doing this first hand.  I think he may try to take off when we go next year too. 

After a long day Casey needs to get some rest.  We will see if she is up for going trick-or-treating or to the block party a little later this evening.  She has been all about hanging with her friends lately.  I am sure if she is able, she will want to be there.  If she needs to rest more she can help hand out goodies here instead.  Either way I am sure she will have fun tonight.

I had a little free time and thought I would go ahead and update on her deliveries.  I will do another post this weekend on tonight's fun activities. 

The recipe we made this year is Pumpkin Crunch Cake.  Someone made this at my grandparents church a little while back and it was so yummy.  Hopefully our attempt was yummy too.

Born to be a Star

We have always joked that Casey has been a diva since she arrived.  She has a way of getting everyone's attention and making everyone fall in love with her.  She has even upstaged some big celebs.

The hospital where Casey was born was known through out the Los Angeles area as one of the celebrity birthing hospitals.  The Labor & Delivery unit was top notch and many of the pictures you see in the tabloids of celebs taking home their babies are taken in front of this hospital.  Casey was born on a Sunday and the previous Tuesday the hospital was crawling with paparazzi.  This was the hospital that delivered Suri Cruise and Brooke Shield's daughter, Grier.  All of the hospital staff was a buzz.  Did you get to see Suri Cruise?  Where you on the floor when Katie and Brooke delivered?  When you would get on the elevators all conversations were about the recent celeb babies.  That was until Sunday night.

Casey's birth was unlike any that most people have or ever will witness.  The fact that she and I both survived was nothing short of amazing.  The hospital was no longer talking about baby Suri, but now all of the chatter was about "that scary birth", and can you believe they are still alive.  I still remember the first time I got on an elevator to go visit Casey in the NICU after I had been discharged.  I was wearing normal clothes so no one knew I was "that mom".  Tim and I boarded the elevator and listened to nurses talk about us!  It was kind of surreal.  No one said our names, and no one broke any privacy laws, but we knew exactly who they were talking about.  The entire hospital was talking about Casey.  She upstaged Suri and her role as the diva was only beginning.

At 6 months old Casey went in to get Botox injections.  This is common treatment for kids with Cerebral Palsy that have stiff muscles.  But, Casey took it up a notch.  Casey received her Botox injections in Beverly Hills- of course.

Since Casey can not close her eyes and she doesn't blink, we are always trying to protect her eyes.  Usually we do this with sunglasses.  They serve a real health purpose, but they add to her diva status.

Now Casey has added her own paparazzi.  For the next 6-8 months a photojournalist, Ilana Panich-Linsman, will be following Casey around.  She is doing a project to show how much Palliative Care has changed over the years.  She will be following 3 local families around.  She will get some pictures of Casey doing all kinds of things (good and bad).  Hopefully with a long range of time like this she will be able to show an accurate illustration of Casey's life.  We think this is a great story that needs to be told and we are pretty excited to be part of this project.  We are also pretty excited to have some great pictures of Casey when it is all done.  She even offered to do some family pics.  We are excited to see how this story comes out.  A lot of Ilana's stories (you can see in the "In Print" section on her link) are seen in some big publications like New York Times, Wall Street Journal, etc.  Maybe Casey can finally get her record deal out of her new found fame :) 

Halloween Party

We LOVE Halloween and decided that this year we wanted to throw a little party.  The party was so much fun.  Casey had a blast.  Everyone wore costumes, and I have to say I was really impressed with how great all of our friends costumes were.  We had trophies for the best group, kid and adult costumes and everyone voted.  It was close since there were so many good ones.  Our winners were Princess Zelda for the kid category, Morticia Addams for the adult category, and the group went to a family that all dressed as characters from Alice in Wonderland.  We had pirates, vampires, pigs, mermaids and all kinds of great costumes at the party. 

We hired a babysitter to help keep the kids safe and entertained (and to keep the house safe too).  That was a FANTASTIC idea!  The kids had so much fun playing with her and the adults were able to enjoy themselves as well.  We will definitely have another party next year, and we are already looking forward to it.

Casey had a great weekend.  She was able to tolerate being in her costume and in her chair for most of the party.  She was so happy sitting on the patio and hanging out with her friends.  When we took her to bed I pulled her out of her chair and laid her down.  I noticed that at some point someone put a fake eyeball in her hand.  She was so proud and held on to it until she was all tucked in.  She now has a fake eyeball next to her bed :)  It doesn't match the fairy decor, but it makes her happy so it can stay.

She is looking forward to visiting all of her doctors on Friday to pass out treats and tell them thank you for another year of all of their hard work.  Last year after making the rounds she was wiped out.  If she is up for it this year there is a block party in our neighborhood and some of our neighbors invited her to trick-or-treat with them.  Hopefully she is up for some stuff, but we just never know until the moment comes. 

Here are some party pictures, and we will post more after Friday's activities.

Quick Health Update and Some Fun Stuff...

Casey has been to a handful of doctor appointments since our last post.  Infectious disease has her on a 6 week course of antibiotics to hopefully finally clear out the cdiff.  Casey's neuro changed her medications a little to hopefully get her seizures more controlled.  Casey's GI is helping to keep Casey comfortable with tummy aches while we get her over cdiff.  We took Casey to get fitted for a new orthotic.  This one will be designed to hold her arms in a position that will open her chest up a little.  It won't correct her barrel chest, but the hope is that it will keep it from getting worse and help keep her lungs from being impacted.  They are having to do the entire thing custom (as is everything for Casey) so it will take a little while to get it done.  It may take a few tries to get it right, but hopefully once we do it will help her a lot.

Now to the fun stuff....

Casey did not make it to her first Girl Scout meeting, but she did make it to this weeks meeting.  She was so excited to wear her uniform and go play with her friends.  Her troop has 7 girls, including her.  She knew 4 of them and she was happy to make 2 new friends.  They did crafts, read a story, worked on a group/teamwork project and had lots of fun.  She is looking forward to going back very soon.

She made it back to her dance class too.  She loves to dance and was very chatty telling her friends how much she missed them while she was out sick. 

We have tried out the heater on the pool.  It works pretty well.  Hopefully she can get in some more pool time before it gets too cold.  She has been getting some swing time too.  She loves when Daddy grills- while he is on the patio cooking dinner she gets to hang out on the swing :)  I love when Daddy grills too!

This weekend we had my sisters, Cappy & Grandpa John, and GP over to celebrate October birthdays.  Casey had a good time visiting with family.  She told them all about her Halloween plans and showed them the ghost she made in Girl Scouts. 

After the birthday celebration Casey went to a Trunk or Treat.  A local hospital hosts one each year for kids with special needs.  We missed it last year, but Casey had fun this year.  About half of the trunks (sponsors) had non-food treats as well as candy.  Hopefully each year more and more people add non-food treats to their goodies.  One booth had the Mommies of Miracles decal up spreading the word about our Trick-or-Treat Program.  That was pretty great to see.  Casey has 2 costumes this year.  She wore her Boo costume to the trunk-or-treat.  She was pretty cute Boo.

If you have not already, be sure to pick up some non-food treats and print out your decal and/or register your address to let kids know you are participating in this year's Trick-or-Treat Program.  As extra incentive this year, every registered address is entered for a chance to win one of three $50 Walmart Gift Card.  Anyone that shares pictures of the decal on their home and/or pictures of their kid wearing the badge will be entered for a chance as well.  Full details on how to enter- click here.  Casey (and Tim & I) had our picture in the paper yesterday with a story about the Trick-or-Treat Program. 

Casey has a few routine appointments coming up and lots of fun stuff planned for Halloween.  We'll post again soon with more updates.  Until then, we hope everyone is doing well.