Tuesday, January 06, 2015

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. 

Saturday, December 20, 2014


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.

Monday, December 15, 2014

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.

Sunday, December 14, 2014

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:

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. 

Tuesday, November 25, 2014

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?). 

Friday, October 31, 2014


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.

Thursday, October 30, 2014

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 :)