Day 43 - 50mg
Well, we've doubled the dose for the last time - and all seems to be going well. A few more hours at the allergist and off we'll go again. The last week has been chaotic and fun - full of travel and food and great friends and extended family. Some mayhem goes with that though - everyone cooking for our crew needed to know to check ingredients (or check with us), which worked out easily enough. We went to a family party on the 4th to watch fireworks by the water and had to be extra careful to keep Patrick out of the house, as there were lots of desserts/foods with walnuts and pecans, but considering everyone was out on the porch, it wasn't bad. He was thrilled that he got to see firetrucks, an ambulance, and fireworks. Every time he asked for food we broke out the stash in our cooler (ELF snickerdoodle cookies, juice boxes, squeeze applesauces, squeeze yogurts, and our safe "granola" bars). It also helps to have friends who are aware enough to stop him from going in the house without an adult. Love you guys!! It was great to get some time that felt like we could relax, and usually parties are not one of those times, so thanks to everyone who watches out for him! We had a grand time fishing, boating, swimming, playing frisbee, and just general silliness in the sun and water. The food was fantastic (everyone took a turn cooking), and it was just generally awesome to take a break from the mayhem of home. Staying organized certainly matters - we dragged a cooler with epinephrine all over the place and out to the sandbar repeatedly and just made sure it stayed in the shade or close to some cool packs. We kept a steady supply of fresh snacks (veggies, ranch, hummus, guac, whole fruits, and a few boxed items) around and it made it easy to stave off hungry kids or risky foods. Couldn't have asked for a more fun crew of friends / family.
The last day was a bit of a rush to get out the door, ended up swinging by the beach for one last dip in the ocean (Patrick didn't mind)! Traffic was nasty getting towards home, so we ended up having to go straight to the softball game via back roads. This is one of those times it's a good thing I'm an overprepared mom - I scrounged food, water, clothes, and enough gear to play out of what was in the car. (Thankfully I had my glove with me!) Patrick got to meet a whole new crew of friends and spent the whole game cooling us off with a squirt gun! It still feels weird to leave him alone with anyone (even for a moment) that doesn't know his history, but folks were great with him. I admit I told him not to eat anything I didn't give him every time I left the dugout. :) He could have cared less, he was happy to keep filling up his squirt gun and shooting us with it. So thanks again to yet another set of friends for helping to both entertain him and keep him safe. It takes a village right?
This is getting easier, more normal, and while we tell his story a million times - it's a good thing. More folks are surprised by the intensity of his past reactions, and that makes them rethink what they know about food allergies. We are learning new things all the time too. The latest FARE newsletter talks about various methods of desensitization and that people shouldn't be doing this outside clinical trials. :) Clearly we disagree there, but at least our doc has a long history of those exact clinical trials and we feel totally safe in his care or we wouldn't be doing this.
He did scare me a bit at the end of the appointment - he was saying his throat hurt, but he was grinning and acting goofy. We stayed longer and kept asking him questions and trying not to encourage him if he was being silly. (He has never false reported before). He seemed fine and eventually said he was fine. (We also gave him water and a squeeze applesauce and he was drinking and swallowing just fine). Interesting. If he's going to start saying he's having problems when he's not this could get complicated...
So thanks to our village - you guys rock!