Monday, May 26, 2014

Memorial Day 2014

 

 

 

 
 
Happy Memorial Day from Grace & Gator! We are thankful for those of you who have served our country and those whose loves ones sacrificed the ultimate gift - their lives - for our freedom. We know your service is what allows us to live in this great nation and have access to the best healthcare in the world for our girl. From the bottom of our hearts we thank you.

Wednesday, May 21, 2014

Celebrating EoE Awareness Week


This week is National Eosinophilic Awareness Week!  Grace's #1 health issue right now is her eosinophilic esophagitis.  People often times look at me like a loon when I tell them this is what she has. Eosino? What??

 
We are thankful for groups like APFED that are raising funds for research and educating medical professionals and others on what eosinophilic disorders are. There is currently NO CURE for these disorders. If you can give, please give.  If you can educate others, please educate them.  I have learned a long this journey that when you describe it as an "allergy" people want to tell you a horror story about food allergies or they want to tell you about their cousin's sister-in-law's nephew that out grew his food allergy or they tell you how they have an intolerance.  This is very different from all of those scenarios.  EoE will be a part of Grace's life forever. There is currently NO CURE for these disorders. The foods she loses or that are removed are out of her diet forever. This has been hard for her, even at 4 years old.  She has never really been able to enjoy a "normal" diet as she has been having feeding and food issues since she was 24 hours old.  One of her loves this past year has been coconut milk. She loves coconut yogurt, coconut milk and coconut ice cream. I have been cooking in coconut oil and using it to make everything from sauces to "buttercream" frosting. In March all coconut was removed from her diet.  She was heartbroken.  It really was a preferred food and on days when she didn't want anything else she would usually eat a cup of raspberry or chocolate coconut yogurt. On Sunday evening Daddy took Grace to the snow cone stand for a treat. Snow cones are safe at one stand in our town and boy are we thankful for that! She always picks the Frozen Snow cone.  We all thought it was because of her love for the movie Frozen. On Sunday she told 827 that it was because the cone was white coconut and blue coconut flavor and she misses coconut. I have to admit this Mama cried when I heard that.
 
 
 
Grace still isn't feeling 100% although we know the change in medicine has made a BIG difference for her. She is perking up and her reflux has been under much better control.  If we can just get her eating well regularly we will be back on track.  Tomorrow she has another scope and biopsies all the way through her GI system.  Our new doctor is looking for answers and a EoE status update. We are praying for good results. Elevated numbers will mean we are back to the allergist and she looses more foods.  Gator gets to go back to the procedure room and stay with her even when 827 and I get sent to the waiting room.  I know he will take good care of my girl. I am so thankful we were blessed with him.  Pray for a calm morning and the procedure to go smoothly please.  Want to know what Grace is so excited about for being in the hospital?
 
 
She loves these Blue Bell Rainbow Popsicles.  Sadly they only have 35 calories a piece.  LOL. In town I can only find the mini ones.  The hospital has the "BIG rainbow popsicles!" Whatever it takes, right?
 

We are SO EXCITED that it is finally warm enough to swim! We have been swimming every day! Grace loves her new Ariel swimsuit.  She says the pool is a "big hermaid ocean" (big mermaid ocean) and she swims all over the pool - even in the deep end! Swimming is such good therapy for her OT & PT. We will be in the pool as much as possible until school starts!


 




Tuesday, May 13, 2014

A new doctor, a better plan

We met with our new GI today.  He spent a long time talking with us about Grace and he had reviewed all her records from birth forward.  He said he wanted to deal with the reflux and figure out why she is refusing feeds right away.  He is concerned that she is having a massive yeast infection in her esophagus, stomach and lungs because of the steroids.  He won't be able to diagnose for sure until he does the biopsies next week.  We have scope and biopsies next Thursday, May 22.  Starting tonight we will switch the medication to what he has directed. 
 
She was down another half pound in his office today. That makes 3 pounds in about 24 days.  He said given her restrictions and previous biopsies he cannot say she won't end up with a feeding tube but he wants to give time for the scope and biopsies and also time to give the new medicine to work.
 
827 & I both felt very confident in him and how he had taken the time to learn our child and listen to the information he had gotten from y'all. Thank you for your help and support as we have navigate this journey.  It hasn't been easy or fun and your support has meant a lot to our family. I was super thankful to unload my suitcase out of the Mama Bus tonight at home.