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Hope’s Story

Welcome to our CaringBridge site. It has been created to keep friends and family updated about our loved one.

My Story is the introduction to our CaringBridge site.

Be sure to read the latest in the journal, view the photo gallery, and drop us a line in the guestbook.

Hope is our beautiful twelve-year-old daughter, and we are so proud of her!  Hope was born with spina bifida and has endured countless surgeries.  Hope's newest challenge - her chest cavity is not large enough to accomodate her heart and lungs.  Dr. Richard McCarthy performed the VEPTR surgery, titanium ribcage, on Hope's left side at Arkansas Children's Hospital in March 2009.  Hope will be having the VEPTR surgery on her right side in June 2009.  We are hoping that these two surgeries will give Hope enough room to breathe and will improve the length and quality of her life. 

Latest Journal Update

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 Hi
I know its been a couple of months since I updated my caringbridge site, but I've been pretty busy.  As soon as we got home from Minneapolis Children's Hospital in May, Kelly called to tell us that she was having a baby.  The baby is going to be born around January 19th, and she is naming him Hunter.  I hope she lets me babysit a lot.

At the end of July I went to Spirit Camp again, and as always I had a great time.  I even moved up to the older girl cabin, the Dancing Queens.  My mom is still giving me crap for not writing her at least once during the week.  I told her I was too tired from having too much fun.

During the middle of August I went down to Arkansas Children's for a sleep study and checkups.  My dad had to work, so my mom, Tyler, and Grandma Cher came with for the first time.  I was sad that my dad couldn't come, but I had lots of fun with my grandma.  It's a long trip, so my grandma had to get out and smoke many times, so we got waaaaay more bathroom breaks than we get when my dad drives.  That part was really nice.

My checkups in Arkansas went fine.  My pulmonologist said to prepare myself for going back on the vent at night again sooner rather than later, but at least he didn't make me go on it yet.  Somebody told us that he will be retiring for sure in June or July.  We will need to go back and see him again before then.  It will be hard to say goodbye to him.

Dr. McCarthy, my surgeon, said that my ribs are starting to close.  He is meeting with the person that invented the VEPTR to see if it is possible to redo the surgery, and what the risks are.  I know he said that puncturing my lungs is a really big worry of his.  I worry about making it after my last surgery in May.

After all my appointments were done, we took a different way home than we usually take with my dad.  We ended up going up the Ozark Mountains and stopping at The Natural Bridge.  I thought it was pretty cool, but that was the scariest ride that I have ever taken.  Our next stop was in Springfield, Missouri at Fantastic Caverns.  My mom picked that cavern because it is the only cavern in the U.S. that you drive through, so that meant that I could go.  We all thought it was cool.   We drove for a long time after that and then stopped in Gerald, Missouri so that my Grandma Cher could surprise her best friends from when she lived in Hawaii 30 years ago.  It made my grandma so happy to see them and I was glad to get out of the car and hear funny stories.  Because we stopped so much, we had to drive like crazy the next day, because school started the day after that.

This year I started the 10th grade, and Tyler started 4th.  We both have more homework than we did last year.  I decided to take German this year, which is hard, but Mrs. Berge is really nice and she helps me a lot in there.

In September I went to my very first concert ever.  It was the Taylor Swift concert in Fargo. My mom went, and I brought my friend, Erica Sondrol.  I had a really great time, and it was her first concert too.
 
Hopefully our new house will be done soon.  I can't wait to move back to Buxton.  I am tired of getting up early and driving from Grand Forks to Buxton every day to go to school. 

Jana,  I really missed seeing you at ACH this summer. I thought about holding up a sign with Amelia that said something like we miss you Jana! Someday I'm going to come and see you and Suki in Delaware.

 Ya, I better go I have lots of new pictures, but its been so long since I've uploaded pictures that I forgot how.

Love,
Hope