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.