5.21.2013

You have to be kidding

 

    So  I guess our journey with kids with medical issues isn’t over.  Yes, Avery is going to be life long.  And now, so is Payton.  No brain tumor…diabetes.  She is not full blown insulin dependant.  They consider her pre-diabetic.  We have to monitor her blood sugar levels and she has to avoid all simple sugars.  No soda, juice, candy, desserts.  Except in the case where her levels go really low.  They she has to get some to bring it up.  Her problem is she spikes and her body can’t get the levels back down.   Luckily I love the endocrinologist.  She is both Avery and Payton’s doctor.  Dr. Saad if you are looking for a good pediatric endocryn in Vegas. 

   Any suggestions of low carb desserts would be helpful. 

And yes, we had a BLAST as Disneyland and Six Flags Magic Mountain.  Since the weather was rainy and cold, no one was there!  Seriously.  I have never seen Disneyland so empty.  We were able to ride almost every ride in one day!  A miracle.  And Six Flags, emptyer (I realize that isn’t a real word…).  Hallie was the only kid on the little roller coaster for four times.  They didn’t even make her get off until she wanted to.  It was great.  Thanks so much to Project Teddy for sending us!! 

disney 2 2013   disney

 

They put us up in the Annabelle hotel.  It was super nice and close enough we walked to Disneyland.  Saved us on parking!  I would HIGHLY recommend this place if you are going to Disneyland. 

5.10.2013

Make A Wish Gala

   We had another amazing event.  Make a wish southern Nevada throws an amazing party!!

makeawish gala0001

The dresses turned out nice.  Avery’s actually is vintage fabric.  It was from fabric my mother-in law had from her mom.  My mother-in-law had a dress made from it when she was about Avery’s age.  SUPER cool!!  Nathan of course looks annoyed…as usual. 

  We also met up with a super cute girl (women, but she is tiny and a lot younger than me, so I say girl).   Her name is Erica Linz.  We had seen her at a few other events.  I asked her what she did for work, she is a cirque du soleil acrobat.  SERIOUSLY??  She stared in the Cirque movie Worlds Away.  Her and Avery totally hit it off!!  We meet some amazing people.  She is at quite a few events we go to.  She has a huge heart and is helping children.  That makes her even more amazing!

erica and avery 2

5.04.2013

It's Not Over

I went to Endocryn yesterday.  Not with Avery.  With Payton.  I did get some of Avery's results since they see the same great doctor.  Avery is low on vitamin D (REALLY?  We live in LAS VEGAS?  I just need to sit her outside a few minutes a day.) and her thyroid med needs to be increased.  
   Now onto Payton.  She has been having some blood sugar issues.  They had her do a glucose intolerance test.  If you don't know, she HATES needles.  Like passes out, hates needles.  Plus not eating to her is pure torture.  It wasn't fun.  But we made it through.  We knew that her blood sugar drops, but the concerning thing is her levels are spiking.  Over 200. That's bad in case you are like me and have no idea. 
   SO....we get to repeat this wonderful test.  Payton looked like she was going to faint just from that news.  We have to monitor her blood sugar now and pray that this doesn't end up looking like what it is looking like.  Diabetes.  I have a brother in law and niece with it. I know what it means.  Especially for a girl.  So if you can add Payton to your prayer lists, that would be great!! 
   But we are off to Disneyland and Six Flags.  I am going to try to forget about all the medical issues and just have FUN!!  
   Plus it's Chris' birthday today.  Happy Birthday Honey.  Even though you lied to me 16 years ago.  I still love you.   

5.02.2013

Finale

   Avery has had her last dose of chemo….hopefully EVER!!  WE are SO glad to be DONE!  Obviously.  We have at least a month of blood counts and watching her.  Then MRI scans to see.  Then in about 3-6 months they will take out her port.  It seems like the longest year of my life.  And actually it’s been almost 15 months since we started. 

   Thanks to all our friends and family who have literally carried us through this.  You are amazing people that have made the journey bearable. 

   And we are going to DISNEYLAND.  Just for one day.  Then Six Flag, which Avery is super excited because she loves big roller coasters!!  Good thing we are bringing a 14 year old to ride them with her! 

  Hope everyone is having a great week too!!