Friday, January 13, 2012

Favorite Photo Friday ~ Good News

This photo was taken around the time Abigail was diagnosed.  I just did a little photoshop fun...

Abigail portrait

Here's her good news story:

When Abigail was a baby I breast fed her.  She wouldn't take a bottle (and I was happy with that).  But when it came time to introduce baby food she wouldn't have it.  I'll never forget her face when I held up a spoon to her mouth.  She swished to one side and then the other.  This went on for months.  I continued to breast feed her for a long time.  She wouldn't eat baby cereal even if I made it with breast milk.  She wouldn't eat a single fruit or jar of baby food.  She didn't like those baby zwibec toasts things... nothing. 

I kept telling her pediatrician at each appointment and eventually they sent me to 'The Feeding Team' at CT Children's Medical Center.  We brought her in, they watched her not eat, they made suggestions that sounded like they would work.  After all this was a group of about 5 or 6 feeding specialists and doctors. 

Nothing worked.  She fell way below normal on the growth chart, so the feeding team sent us to a GI (gastroenterologist) doctor.  Dr "H" (I'll call him) was very familiar to me.  My mother worked with him for years and years as a GI nurse doing many of the procedures that Abigail had done then.  We were in good hands.  Dr. H is the head of the GI team and known all over for his work with GI issues. 

At the first appointment they decided to do a first endoscopy on Abigail to rule out anything wrong internally.  The first one was scary.  We were admitted to the day surgery floor and Dr. H assured us that "they probably wouldn't find anything."  We were convinced that she just didn't like to eat yet. 

And we were all wrong. When Dr. H called us from the waiting room he said, "yes, we did find something.  She has Eosinophilic Esophagitis."  And then he went on to explain what it was.  I didn't hear a word he said.  I was completely shocked.  We met with a dietitian that day while my Mom stayed with Abigail in the recovery room while she slept.  In one quick morning I had to completely change everything that I was feeding her.  At 22 months old, never having baby formula I was to put her on an elemental diet called Elecare.  It's a powder similar to a can of infant formula.  She was to have no foods with wheat, soy, fish, nuts, dairy, or egg. 

Over the next 3 years Abigal was introduced to one of those food groups at a time.  And then after 8 weeks, back to the hospital for another edoscopy.  Each time she had an IV, they 'put her to sleep', and stuck a tube down her throat to take a look and to take a biopsy.  Over and over and over her lab results showed eosinophils in her esophagus even though she shouldn't with the "formula" and no soy, wheat, eggs, milk, nuts, fish.  Basically eosinaphils in her make it difficult to eat or perphaps painful, although Abigail never complained. 

Since the 6 food elemination diet wasn't working over these years Dr H decided to put Abigail on several meds that he assured us would work.  Why not in the first place?  Well, they are just not optimal for a child to be on for any length of time.  Finding out what foods through the elimiation diet is just better.  But since we weren't getting any good lab results be opted for the meds. 

So  last Friday Abigial was admitted for another (now routine for her) endoscopy.  And the results came back.... positive.  There are no eosinophils in her!  No sores, no pain, nothing.  And we are thrilled1

Yes she still has and will always have this digestive disease called Eosinophilic Esophagitis.  Her lab resuts were only postive because of the meds.  She still can't eat soy, fish, nuts, dairy (milk, cheese, and a million other foods that have a trace of milk) but we have something to go on.  And we are happy and oh so grateful for her kind doctor, the nurses that are sweet to her at the hospital and our families for their support. 

Tonight Abigail asked her daddy something she never has ever brought up.  "Daddy, since I have no 'phils' in me, can I have some of the food I'm allergic to?" 

"No, sweet girl.  Not yet." 

"Oh, okay."  And off she went with a little ballet twirl. 

She is our happy little girl.  She never ever complains of not getting the birthday cake, not having icecream, having special meals for her, not having the something pretty someone else is having.  She just accepts it.  Boy, I could learn a lot from her.  I love you Abigail Mei!

the long road

5 comments:

  1. Great news...though a tough journey I'd imagine, but at least you now having something to work from.

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  2. So happy to hear that she is improving. What a tough thing to see her go through.

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  3. Beautiful photo! So happy to hear she is showing improvement. Have a wonderful weekend!!

    Blessings,
    Jill

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  4. I am so sorry that your sweet girl had to go trough so much pain. But I am glad you have also some good news. I wish her all the best. <3

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