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 :) 

Wednesday, October 29, 2014

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.

Sunday, October 19, 2014

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.