Friday, May 08, 2009

our boy

it has definitely been awhile since i've updated on grayson. that's really because there hasn't been much to tell. we stopped trying to add new foods awhile ago, because they all seemed to cause him more eczema and more distress. so we are still with chicken, sweet potatoes and rice, in many different forms. well, ok. not very many different forms. but i try new ways to cook sometimes. my sweet cousin molly beth has a kiddo who can't have many foods because of reflux and she has shared some GREAT recipes with me for something that looked like a pancake, but when baked, kinda looked like a scone. so hey, there's two more things right there. :) i called them cookies and he ate them UP.

we feel as though we have exhausted the dr's here in our town. they are awesome and we love them all, but i think they would likely agree. his case is just weird. SO.. our dr has pushed an approval through with our insurance and we're going to a hospital in denver that has a 2 week day program for allergies and eczema. the thing is... these dr's are noticing that kids like grayson, who test allergic to EVERY SINGLE food they are tested for via blood, are indeed allergic to many foods, but there can be some false positives. but kenny and i can't figure that out on our own. we've tried. there are so many things that exacerbate his eczema, and every time we trial a food, it gets worse. but it could be because he was around a dog that day. or touched a plant. who knows? we certainly don't. so, we will be doing medically supervised food challenges. grayson and i will be admitted into the hospital the first night for surveillance and then the rest of the two weeks, we will be at the clinic from 8 to 5ish and then back to the hotel at night. we are very excited, but i'm getting more and more nervous as it gets closer. i don't want to be away from aislyn that long but she can't come to the hospital with us during the day so i can't really take her. she will be there some though. also, i don't want to get my hopes up, but i do. they told me there is a good chance he will come away with several new foods! can you imagine?! and they will teach me how to treat his eczema effectively when it does flare. i think satan is whispering in my ear "this is all for nothing. it won't work." which is discouraging. so pray against that for me please!

we can use tons of prayers actually. travel, hotel, grayson not to freak out while we're there, etc. he does really good with drs, so hopefully that won't be different. right now, he has torn his arm and hand up so badly that he has been wearing a wrap for several days. he caught a virus last week that caused him to flare and one night he tore his hand up so bad that kenny and i got in the car to take him to the E.R. at 11 o'clock at night. until we remembered that everyone thinks they have swine flu. and we didn't want whatever it was they DID have. so we turned around, and played dr. it's looking better and healing great, but its things like this we would love to avoid!

all that to say, we're very excited and hopeful. please pray with us for MORE NEW FOODS! OH to give my son an apple, or fruit of ANY kind for that matter would bring tears to my eyes. he lives on dum dums and rice bars from trader joe's for snacks at this point! luckily he LOVES them and sees them as a super fun treat still.

thanks for listening to my ramble. hopefully i will have access to the computer when we're there so i can do a play by play day by day! but that is yet to be determined. it will be mid june, but i'm not certain of the date yet.

4 comments:

Molly Beth said...

I'm praying you learn lots, and he comes home with loads of new foods. I am trying to be more brave with Cooper and food. The blueberries seem to be a success. I am thinking of trying mango next. And, I think he may be able to come off of reflux meds soon. We are dropping down to 1 dose now. He has started to have more skin irritation now though, but I think it may just be the weather, ect. I have awful skin, so rashes aren't a surprise. Anyway. Hoping for the best for you guys!

Jennifer said...

We are praying for you all the way. I KNOW that he sill get more foods. Two years ago I was told C would most likely never be able to eat and here we are 14 foods later. Easy for me to say right. I know it is hard not to think the worst but I also think you know what you are up against when you are thinking the worst. . . satan.

Girl, you are an amazing mama. Grayson is lucky to have you. To have someone who will fight for him, to get him the best care possible, the best he deserves.

AW said...

Amy, it's been far too long since I've read your blog. I'm so sorry...I think I might put you up on my blogroll if you're okay with that. I am happy to hear about the 2 weeker in Colorado...I hope they find some new foods for Grayson to eat. I've got some food allergies (gluten/dairy/soy), but I'm an adult. I can understand and go what I need to do to live with it. My son seems to have similar allergies and he doesn't understand now why certain foods are off-limits. I hate it. Watching kiddos go through this is SO much harder than goign through it myself.

Good luck! Blessings!

A

ErikaRuth said...

I found your site from Jen. :) We also live in Albuquerque, and our middle daughter has FPIES to milk, soy, and corn, and IgE ANA reactions to Cherries and Macadamia nuts. I'd love to get together for a playdate sometime and just let the kids be kids. Hope all is well with you! We're only down 5 foods, and are thankfully, managing now. But, I'm constantly quizzed on, oh what CAN she eat...