Wednesday, May 29, 2013

More allergy talk, &some REALLY SPECTACULAR NEWS.

Here's a little update on Jude and his...

ALLERGIES. And lots of them.

Right now Jude's "official" allergies are wheat, eggs, dairy, nuts, and mustard. At our last appointment when we found out the results of his patch testing (we have received excellent care and been able to get thorough testing done) his tests showed that he was also allergic to...

Soy, barely, potatoes, beef, rice, and corn (That list may be missing or have added one or two, I didn't commit it to memory).

That would literally wipe out his entire diet. There are some with Eosinophilic Esophagitis who are allergic to so much, there is little they can eat to sustain their diet and they end up with a little feeding tube through which they get their formula. That will hopefully never be the case for Jude and I would do everything in my strong will's power to avoid it!!

We found out about his original allergies, to cows milk and only certain nuts, so we took him off just that- cows milk and the certain nuts. My dietician informed me that if he's allergic to cows milk he is most likely allergic to goat milk too, and that we should just go off all nuts to be safe. We made those changes and I, too, went off all dairy and nuts as Jude is still breastfeeding. We also have him drinking Neocate and have seen huge improvements. He's gaining weight, been sleeping better, is overall just a happier baby and his appetite has literally doubled (his esophagus is obviously [hopefully] healing).

So, back to the story... The original plan the doctor suggested when we found out about all these new "allergies" was to take him off all these foods too, then get another EGD to see if he's healing. I quickly reminded him that we had already made drastic changes since the last EGD and he seemed to be improving. So in order to find out if he was doing better, we would have to get another EGD. If he is healed... great! We know his diet is working. If not, we'll have to take out everything else he tested allergic to on the patch testing. So we are going to get another EGD, hopefully soon, and we can just pray he is better. (PLEASE PRAY!!!!!!!!!!) We have to be extremely careful because even the littlest crumb of an allergen could cause his throat to freak out and ruin all the results on his EGD... A little daunting.

So that's where we are. We are not implementing his "new allergies" at this point and I pray we won't have to. His skin is really sensitive and reacts to even the saline so it was hard to read the test results in the first place.

Jude is growing, happy, healthy, active, and precious beyond all words! He has quite the refined pallet and enjoys spicy salsas, hummus, heart of palm, pickled asparagus, red peppersand any and every fruit and vegetable we offer him.

To him, every animal woofs. He is absolutely enthralled by every member of the animal kingdom. He is attached to his mama at the hip and calls me mama, muhmuh, Mimi, mummy, mommy, mum, mom, and every other combination of m with a vowel. He loves to dance. He is getting really good at folding his arms for prayer, he wipes his mouth with a napkin while he's eating, he covered me with a blanket when I was lying down the other day, he gives big, tight squeezes when he hugs, he likes to smell flowers and blow on his food, he still chuckles and giggles every time he nurses, he growls when he's happy, he loves books and will sit and read one after another with us, and he is the light of our lives, as always! 

Tonight was the first night in almost a year that someone else has put him to bed! We were a little nervous but the time was long past due. Dan cuddled and rocked him and he did great! He had a couple crying spells and would occasionally point at the door and moan like "what is going on?! Where's mommy!?" So we made some progress tonight!

We had a showing this evening so that's always exhausting. We are enjoying an old John Wayne movie on our super soft bed!

After I took off the patches during the patch testing

Hives. THOSE DARN HIVES!!!!













UPDATE:

It's been almost two weeks since I wrote the beginning of this post. Yesterday, he had another appointment with his GI doctor. At his last visit, he was in the sixth percentile for weight. Yesterday, he was up to the twenty-fifth percentile! I was very near tears when the doctor started praising us for his progress and showed me that once-blasted little Denver II chart and the slightly steep uphill slant of that little blue line. What amazing and impressive progress in two short months!!! I <3 NEOCATE & OLIVE OIL!!! He still hasn't grown height-wise, but we are going to wait on that due to the inaccuracy of measuring height on squirmy toddlers by a different person every time. Grow, Jude, grow!!!

He has another EGD on June 26th and if it is free of Eosinophils and cleared of the trauma, then we can continue happily on our diet and maybe one day, start introducing new foods that he's currently allergic to, one at a time. That is what I am hoping and praying for!

The not so desired outcome would be that his throat would still be full of Eosinophils and "damaged," so we would have to take out all the rest of the foods he's "allergic" to, according to those highly unreliable allergy tests.  

So that is where we are. Trying really, realllly hard for Jude to avoid his allergens and for me to avoid all dairy products. 

We are starting nursery next week and I'm a little paranoid about it... ten toddlers all eating goldfish?! HELLO!!! You know I will be in there the whole time on some serious patrol. 

Pray for us... please?!

Here a couple more not so heartbreaking pictures...

We borrowed Joslin's little pink hat before we had gotten one of our own. :)