I got an email from wordpress the other day to tell me about my “2014 year in blogging” and I remembered “OH Yeah! I have a blog!”. Looking at my measly stats from 2014 (I wrote 1 post all year…ONE!), it would appear that I had absolutely nothing to blog about OR that I fell off the face of the earth. So, what has really been keeping me from blogging all this time? This adorable face…
I have 3 kids!!! Life with 3 kids isn’t any more difficult than life with 2, but it’s so.much.busier. And so, this blog has suffered, or disappeared really. I’m not sure if this post is my attempt at making time to continue to write about being the Mom of a child with LTA’s or my farewell to blogging. But, just in case, I thought I should at least show off my beautiful family one more time.
And while I have you here…a quick update. We have made some good progress working with the school system to bring consistency to their food allergy policies, J.T. continues to handle his food allergies well (in and out of school), Our new addition shows no signs of food allergies (fingers crossed) and my resolution for 2015 is to continue to advocate for J.T. and to have renewed diligence to make sure we aren’t getting lazy or complacent. Wishing you the best in 2015!!
When I tell people about JT’s allergies and about all of the precautions we have to take the most common response I hear is “that must be so hard”. People hear about how you grocery shop, what you cook for dinner and how you prepare for outings and they say “I don’t know how you do it!”. And really, there is nothing wrong with this response. It’s not insensitive or rude and I don’t mean to imply that it is. I’m sure in a different life I would have had a similar response. But, things like shopping and food prep aren’t hard. Does reading EVERY label in the grocery store make shopping take twice as long? Sure. Does finding (or creating) recipes that are safe for JT and still yummy and healthy enough to serve my family require more research? Of course. Is not being able to just spontaneously grab dinner out at a restaurant inconvenient? You bet. But those things aren’t the hard part.
The hard part has nothing to do with time or convenience. The hard part is that gut-wrenching hour after you notice a few unexplainable hives on your childs face and you are just watching and waiting for an allergic reaction. It’s rubbing your childs back as they retch and vomit for 6 hours straight because tests results have shown that they have outgrown an allergy, but not an intolerance. It’s seeing your brave child’s lip tremble as they hold back tears at a birthday party and the cake that they can’t eat has their favorite character on it. It’s emergency room visits, hospital stays, ambulance rides, testing and testing and more testing. Hard is dropping your child off at school KNOWING that at some point they will be in a room with something that could kill them and hoping, just HOPING, today isn’t the day you get a call from the nurse.
That’s what is hard. The other stuff is easy.
During our meeting with the principal, head teacher and nurse at JT’s school we created a heath plan for JT. Officially it is called a “Food Allergy Individual Health Care Plan”. I would have prefered a 504 plan, but I’m happy with the accommodations that were made by the school. I came to realize that as long as a plan was put in place to safeguard JT, it’s title wasn’t all that important to me. Of course, we were not happy about the transportation piece of the plan but I’ve talked enough about that for now. The allergy health care plan appears to be a basic plan that can be individualized for each child. I wish this plan had been offered to us by the school prior to the school year. I’m pretty sure that if I hadn’t requested the meeting we would still be without a plan. But now that we have one, I feel much better.
Here is a brief overview of the plan, It’s pretty long so I only included a few key points. The plan states his allergies, which medications he is to take if he were exposed to said allergens and where those medications are located. It explains how the staff is educated about epi-pen use and about JT’s allergies specifically (including substitutes). It covers how food will be handled in his classroom, in the lunch room and on field trips. It also lists responsibilities for JT and for us. JT’s responsibilities include, wearing a medic-alert bracelet and notifying an adult immediately if he ingests an allergen. Some parts that were individualized for JT are that he will have extra space around him at the peanut free table in order to reduce risk of exposure to his other allergens (I was really concerned about milk spills), and that students in his class will clean hands after lunch before returning to the classroom and in the classroom after snack. I feel like it covered everything I was concerned about but I hope I didn’t miss anything.