Saturday, March 27, 2010

CRAZY DAY!


Today we had so many challenges-all in the same day. First of all, I tried to go to the same Subway that usually accomodates us (the one on Hudson Rd.) and when I explained to the woman (as I ALWAYS DO TO THIS SAME WOMAN/GIRL) that she needed to wash her hands and wash the knife before she got started-she rolled her eyes and said "well, this knife has not touched anything." Then I proceeded to tell her that he was also allergic to some of the breads and she went over to the manager as if to wisper about the "crazy customer" and then the manager recognized me and told her "its ok". He is usually always so nice to us and knows our situation and then when I went to check out he politely told me that she was just doing her job and that they have rules to follow and they can't be expected to break them for certain people and basically eluded to the fact that I should be happy regardless if she was a B-I-T-C-H! I told him "you do not have to do this for us-we understand" and as my eyes filled up with tears of frustration and embarrassment-I paid for my food and vow to never go back there again. So now we are down to ZERO restuarant that we can go to. I understand if they are not comfortable with my requests-but do they really need to be a boob about it? As if our lives are not hard enough-spare the look of inconvience please!

Then, because it was such a beautiful day, we promised Ty we would walk him up to the YMCA and let him play on that park; only to find there were eggs shells EVERYWHERE! We calmly told Ty we couldn't play here and promised to take him to the park in our neighborhood. As we got to the park and he saw all of his friends-we notice the lovely picnic of Chic-fil-A and milk going on in the middle of the playground-guess what? "Sorry Ty, can't play on this park either." And although it was disappointing, Ty understand and the promise of a popsicle was enough to satisfy him. I was so proud of him-I-a grown woman-wanted to pitch a fit and he was ok. The things he has to go through and is required to understand seems unfair to me but to him-they are the norm.

On the dog front-we were actually contacted by the directed of AngelServiceDogs.com and as we were basically told Ty would be bumped up to next in line (thousands waiting)-after much conversation the director basically tells us to either pick only one of the allergens to have the dog sense of not to do it at all. That's right-I think we just got turned down b/c his were too much for the dog to handle. They are used to one sense and Ty is so anaphylatic to three and there's no way we could chose just one. Well, at least that is 20 grand we don't have to come up with... But we are back to square one. How can we ensure his safety? How can we let him out of our sight? How can we increase our safety measures? Will he ever catch a break? Will the stress of this ever decrease?

Wednesday, March 17, 2010

Service Dog Update


Well, Chad and I are still in the process of getting all our ducks in a row for this service dog. It is a lot of money and a decision we can not take lightly. My feelings are "would you rather have the best surgeon operate on your child or the cheapest?" The dog is the same scenario. Of course it is not that easy and its no guarantee that it will prevent further breakouts-but it IS an added member to our team and and extra set of eyes (and not to mention a canine nose that can't be beat) and for that I believe it is worth it. So, I am asking everyone who cares anything for Ty or anything for their own children-what if this were your child-wouldn't you want help? We are busy brain storming on fund raising ideas-so all suggestions are welcome.

To explain the severity of his allergies-imagine letting your children finger paint and then not washing their hands afterwards..... Everywhere they touch has paint on it right? Imagine your beautiful house, toys, clothes, furniture, walls etc-everything is contaminated by paint! In our case-its the same thing with food. If kids (or adults) don't wash their hands after every time they eat-from there its a potential outbreak for us.

Good hygiene practices help not only keep your house clean, but it keeps Ty and other allergic kids safe. Food allergies are not just about ingestion-it can be the simple act of contact that can trigger anaplyaxis. Ideas for foods to eat on the go or snack foods that you don't have to worry about contaminating your surroundings are corn based cereals like Kix, Honeycomb, and others that are semi clean but contain wheat (which a lot of children are allergic to) are Fruit Loops, Cherrios and Apple Jacks. Other great ideas for snacks are fruit snacks and saltines. All of which are healthier options than Goldfish or Honey Nut Cherrios.

So think before you eat next time and together lets GO CLEAN!

Sunday, March 14, 2010

Constant Challenges


Well this is day 10 after our last anaphylaxis and we are starting to see our old Ty return. He still has an awful rash due to the bandages they put on him while in the hospital, but other than that he is recovering nicely. Because of our last scare, we are so gun-shy to go anywhere. People just don't understand the severity of our situation. I'm finding it harder and harder to go places and do things. Places like church, school, playdates and birthday parties are almost not worth the work. I hate it for Ty because he is now at the age where he realizes he is starting to miss out on things and although he is very smart-he doesn't quite understand. He thinks if he just doesn't eat milk, nut, or egg-everything will be fine. He doesn't get that cross contamination is just as bad.

And now with Easter quickly approaching-we bought our Easter outfit (which he calls his "magician" outfit) and he has been begging to wear it only to find out we won't be going to church on Easter b/c children's church ordered a special case of doughnuts for a treat for all the kids. And there is no way I would take that away from everyone else just so my child could attend. But at the same time I feel like I go over this a thousand times with people and it just does not register. Its not just if he eats it-he can't touch it or be near it!!! I don't want to put too much hope and faith in this service dog (AngelServiceDogs.com) b/c ALL of my faith is in God and His healing and provision-but I can't help but feel like this dog would lessen half the load on us right now. I could at least let Ty go to more things and I would have an extra set of eyes, and nose to know if it is safe for him or not. I know holidays are supposed to be fun-but for me it means more stress and as long as it is centered around food-its life threatening for Ty. What ever happened to cheap toys and stickers as treats for kids???











On a different note-here is a great recipe for Dairy, Egg, Soy, and Nut free Chocolate Chip Cookies:

8 tbs Earth Balance Dairy/Soy free butter (roughly 1/2 cup butter)
2 tbs milled flaxseed mixed w/ 6 tbs water (mix well)
1 cup white sugar
1 cup brown sugar
1 tsp vanilla
2 1/2 cups self-rising flour
1 bag of Enjoy Life semi-sweet chocolate chips

Mix first 5 ingredients until it is creamy and then add the flour and the chips. The dough should seem a little dry. Roll into little balls and place on ungreased cookie sheet. Bake at 350 degrees for 10-12 minutes. ENJOY!

Allergy friendly foods don't have to be bland or nasty-I promise to provide wonderful recipes to let you know just how good (and healthy) you can eat; while keeping others safe :)

Tuesday, March 9, 2010

Another Close Call

I apologize for the leave of absence from my blog but life has been crazy. However, I vow to be more devoted to informing everyone not only about our lives-but about all childrens' lives who are plagues with food allergies.

Friday night we went to Macaroni Grill (one of the few places we can eat at) and ordered the same thing we always order off of their allergy menu. For those unfamiliar with Romano's Macaroni Grill-they pride themselves in catering to people with food allergies. They have a very detailed, allergy specific menu and promise to cater to those needs. Ty got his usual capellini pomodoro and italian sorbet-all of which are milk, egg, and nut free. To make a long story short, we got home and Ty started acting very crazy and hyper. He started off coughing and then the rash started. We gave him benadryl and a bath and before we knew it-I was giving him the epipen while my husband held him down and we were in an ambulance on the way to the hospital. This makes three times now that I have had to watch my child fight for his life and wonder what the outcome was going to be. We determined it was some sort of cross-contamination at the restaurant that almost took my three year old's life.

Part of me is frustrated that Ty has to deal with things most kids don't and I get impatient with the fact that God has not taken these life threatening allergies away: but the other part of me finds hope in His protection in an organization called Angelservicedogs.com. We are now in the process of obtaining a service dog that will be Ty's shadow and alert him if there is a dangerous food near him. These dogs are allowed everywhere! I will keep you posted on the progress and will probably ask for some help in raising the funds for this come into play. Please pray for Ty and pray that God continues to spare him and protect him.