So if I’m getting back into blogging why not just turn this into our allergy reaction diary instead of a blog? Is there a difference?
I need notes. The daily what happened to whom. I really need someone just following me around all day with a pad and paper writing things down for me.
Today was great. Aside from Layton’s typical not wanting to eat anything. Which has been worse for the last week, but I am blaming her cold right now.
This evening Gage started in with his typical “I’m hungry”. He says this even while hooked up to his feeding tube. He misses eating more than I could ever imagine, even though his tummy is full. I ask him what he wants and his response “something crunchy but chewy, something like French fries”. This kills me to the core. Not only do I not have a solution for his want, I painfully know that he will never have French fries. The last time Gage ate potato he vomited everywhere, he was one. He only knows what a French fry looks like. He has no ide what it tastes like. He’s anaphylactic to potato, he’ll never taste one.
You see, now, when Gage asks me for something to eat he’s very descriptive. He knows what texture he wants, he knows if he wants sweet or salty. He wants to eat real food. It makes me so sad that it’s also started making me angry. There is nothing I can do for him. Nothing.
I think though, Gage still has hope. That’s the one thing I feel is slipping from me. Even though Gage is so frustrated and hates his disease, he still see’s the future and him not having a feeding tube. He can see himself eating food. We’ve been in this for 7 years and we’re not where I had envisioned us being. I guess that’s why my hope is falling.
It’s all the little events too that are killing my spirit. Like tonight. Once Gage settled on some raw cauliflower with salt I thought all would be well. I knew it wasn’t what he really wanted, but he crunched away. Then after he had crunched through one big tree he says mom my eye is itchy. I told him he was getting in the shower next and he would be okay. However, he comes over to me and says and there’s a bump on my lip. Sure enough he had a little blister right there on his lip as his eye was becoming more and more red. He went into the bathroom to hop in the shower. When I took him in a towel I noticed he also had a big hive on his back. That’s when the partial panic sets in. Is this going to be a full blown anaphylactic reaction? So we gave him a Benadryl and I told him if he starts feeling anything in his throat or with his breathing to get out of the shower and come get me. Luckily, his reaction didn’t get out of control. His throat did hurt a bit but the Benadryl kicked in and he was fine.
So now we have the issue of what the heck happened? Was it just the salt? Has he become allergic to cauliflower? I’ll have a talk with him about it and see what his judgement is on it. I’ll let him make the decision on if he tries it again or not.
Be strong and courageous.
Do not be afraid;
do not be discouraged,
Lord your God
will be with you wherever you go.