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.