Sandwiching...

The title of this post is Sandwiching. Sandwiching is when you say a good thing, followed by a not-so-good thing, finished by another good thing. Teachers use this technique in the classroom all of the time!

We have the results back from Jack's most recent surgical experiences. Before I get into that, here are some recent saying from Mr. Jack-Jack:

1.) A while back, Jack asked me if Barney (from TV) has a tubie in his belly.

2.) Katie was sick and very cuddly. She was crying, a lot! Jack said, "Katie sick. Go hospital?"

3.) Jack sang this:
           To The Alphabet Song: ABCD toothbrush toothbrush

           To Twinkle Twinkle: Twinkle twinkle bicycle bicycle Jingle bells jingle bells jingle all the way

Okay. Time for reality. I guess we should all expect what I'm about to say. The biopsies of Jackson's esophagus and what the GI doctor saw are in agreement. Jack has been diagnosed with Eosinophilic Esophagitis, or nasty eczema all over his esophagus. We were sure when the doctor showed us the images from the biopsy that this was going to be the diagnosis. I should scan in the images and show you Jack's esophagus, stomach, and small intestine. Uhm....that's ok. You can do a search on what eosinophils are all about here, or just type in the phrase and you can see an image of the inside of an esophagus with symptoms of Eosinophilic Esophagitis. If you REALLY want to see Jack's images, I'll gladly scan them in. Just let me know. It's not really gross. Then again, not much is icky to me anymore...I'm sure you know why!

The plan:

Start Jack back on an elemental formula. Jason and I aren't all too happy about this. Jack was fed Neocate Infant and Neocate Junior up until this past August when he was switched to a 'real food' liquid formula diet, Compleat Pediatric. We took him off of the elemental formula because his allergy test said that he was no longer allergic to milk. Magically, once the Compleat was started, Jack stopped vomiting and started to gain weight. 

Jack needs to go back to an elemental formula, this time Elecare, to get the EoE under control. This is very confusing to me, mainly because Jack is tube fed. It's not like a lot of food travels down his esophagus, causing the inflammation. Jason and I are also upset because the GI doctor wants Jack to stop all oral feeds while we run a trial. The one thing Jack enjoys is tasting food. He only swallows saliva. He won't understand why he can't taste anything. I'm hoping we can let him only taste the plain foods (crackers, plain chips, cheerios). I'll have to talk to his doctor to clear this. Jack sits at the table with us and asks to taste the different foods from our plates. He truly enjoys tasting. He has even been sipping from a hard-spout sippy cup!

* We will also be trying an inhaled medication that could control inflammation. I don't have a name 

   for this yet but you can learn about the procedure towards the bottom of this page.

* That is all. The Hirschsprung's Disease biopsy results came back negative. Jack's poopy problems 

   are not caused by a nerve issue. It's most likely because of his low muscle tone.

* I will be creating a note card that can be kept in my wallet with Jack's diagnosis, medications, 

   surgical procedures, and physicians. I just can't keep it all straight anymore!

* I have begun preparations for our 3rd ever family vacation. Wow...Jack's list takes up an entire 

   page. I'll write about that some other time.

To end on a happy note, here are some recent pictures!

Jack accompanied himself to "Twinkle Twinkle Little Star"

Evelyn is 7 years old now. This is directly after she got earrings!

Jack, Jason, and Katie. Jack had a wonderful time outside in the sun. He did very well!

Katie is 1 year old. She is beginning to take after her brother when it comes to getting in trouble!