Friday, April 27, 2012

Party & Other Fun Stuff

It's official, as of Monday Casey is a 6 year old. Thank you to everyone who helped make this a special event for her.  She woke up excited about it being her birthday.  We got her dressed and ready for school in one her new outfits.  About an hour before school, our power went out.  We assumed it was just our area, so we went ahead and loaded her up and drove to school.  When we got there we were told the school's power was also out and that we should go home.  Just as we pulled into the driveway back home the power was back.  I called Casey's teacher who asked if we could bring her back.  It turns out that she had all kinds of birthday treats in store.  Casey loves her birthday, and I am so glad she went to school.  She had a great time.

Casey, Grandma Barnes & Uncle Larry @Chili's
We picked her up from school and went straight to Chili's (Casey's favorite restaurant).  There is a Chili's in town that is located between the school for the blind, school for the deaf, the state home, and Rosedale.  The staff is wonderful with special needs and Casey loves to go there.  She reads the menu and chats with us.  It's really cute.  She had a little bowl of ice cream for her birthday. 

Party group photo
On Sunday Casey had a great time at her party.  We had a private room at a local book store - Book People.  They had a craft area set up for Casey and her friends to make bookmarks and crowns.  Then they had a lady come in and read a few stories.  I went up a few weeks before to help pick some books that I thought Casey may enjoy.  Her and her friends loved it.  The reader did a great job really getting into the stories.  Casey kept saying no when I asked her about cake, and yes when we offered cookies.  It was a little different, but it was her party so if she wanted cookies instead of cake, then cookies it will be.  I was asked many times where the cake was, but people seemed to go with it when we offered cookies. 

Casey with her nurses & Mom
Casey was so excited about her party that she went into a little sensory overload for a while.  She was awake, but just sat back taking it all in.  Most of her friends were able to make it, as well as most of her nurses.  It was a great time, and I am so glad we decided to have it at the store.

On Friday we were supposed to take Casey to therapy, then on the way home go shopping for her party outfit.  Instead Friday came with seizures, a fever, and all kinds of worries.  We kept her home and had her rest as much as we could.  Luckily she had a good night and woke up feeling much better on Saturday.  We took her shopping and she knew exactly what she wanted.  As soon as she saw it she let us know that was it.  She picked a beautiful purple floral shirt, white leggings, and a purple flower for her hair.  She looked like a princess.  Then of course, we had to paint her toes purple that evening to match.

Casey checking out some library books
Last Tuesday Casey was finally able to go to the library.  She had been planning a trip to meet another kindergarten class there for story time for weeks.  Every time she was ready to go something seemed to come up.  The other class was not there with her, but Casey was able to go and check out a few books all by herself.  She picked some elephant books.  She does love her elephants.  We have read them all many times since.  She goes back this Tuesday (hopefully with the class) to get some new ones.  She got a lot of books for her birthday as well.  We have doing a lot of reading around here.

Each year Make-A-Wish has 'World Wish Day'.  There are events all over that each branch hosts.  We were not able to go last year.  Luckily this year Casey gets to join in the fun.  Sunday evening we will head to the party.  I can't wait.  Make-A-Wish always does such a great job.  I am sure Casey will have a lot of fun.  We will be sure to get and share pictures.

Between Casey's birthday, Tim's mom & brother visiting, and just lots of stuff going on (through the rest of April) it has been a busy month.  A good busy, but busy.  I am looking forward to next week getting back to our normal schedule.  As always, we hope all of you are doing well.

General Update

Casey had an appointment with her Ortho last week- just a standing 6 month check-up.  Overall it went well.  They wrote an order to get an evaluation for a new wheelchair.  Casey has gotten so long that she is hanging out of her current chair.  Currently she is in a wheelchair/stroller.  The next chair will still be customized to her needs, but will be more like a wheelchair. She is getting so big!!!  Depending on how the chair works, we may have to start looking into an adapted van too.  We knew eventually this was coming.  It will take a few weeks/months to pick the best chair for her, then it will take another 6+ months to actually get it built and ordered.  By her next birthday though, possibly even by the end of the year, she will be in a big girl chair.

We have been dealing with some issues with Casey not having much output (urine) over the past month especially (off and on for a while though).  We have taken her in for all kinds of tests and everything is coming back clean.  We ruled out infection, dehydration, kidney stones and blockages.  We went Tuesday to talk with Urology.  They have us keeping a journal of all of her fluids in and out.  We have to keep this for a few weeks, and help her if she goes more than 6 hours while awake with no output.  She has been going about 12-13 hours up until now.  Mid-May we take Casey and the journals back to see if we are leaning toward her just needing more volume in, or if we are dealing with something a little more complicated like Neurogenic Bladder.  We are hoping for volume.  Either way though, it is a long road ahead.  Casey's intake is such a fine science that even adding an ounce a day can be tough.  We will post more in May after we get some more answers.  The good news is that yesterday we did not have to help her at all, so far today is going pretty good too.

I am working on uploading some pictures from Casey's birthday and other things.  I will get another post with party details, pictures and more up later today or tomorrow.