To start, I'd like to share Killian has been reaction free for OVER a YEAR now! That's huge for us! HUGE. It's almost unreal to me. I guess we had some unfortunate times to get through in the past. I remember meeting other parents of food allergic children and being shocked that they never had bad reactions, never used the epi, never rushed to the hospital, nothing like our family. For a while, about 3-4 years, I thought maybe it was our fault. How did we have so many incidents (even just one being too many) and others had none. We had 2 incidents where the hospital asked why we didn't give the epi pen. The first was a lesson, with the Benadryl, we didn't know if we could. The 2nd, well - I wasn't there for that one so I don't know.
After having switched allergists and just learning in general how severe Killian's allergy is, I've realized it's not us. We haven't neglected or misjudged...he is THAT sensitive. His allergist informed us he has reacted (anaphylaxis or very serious) to tiny, trace amounts that even her most severe patients have never reacted to. Soooo, that kind of makes me feel better? I'm not a bad parent like I thought.
We're getting ready for Kindergarten now! It's exciting. And exhausting. Killian will only be attending "part time" because of the size of the school district. I now realize how much better this is for me, as I was originally upset he was being robbed of full day curriculum. NOW, I get to ease my nerves into this whole BIG school transition. Baby steps. Next year we can deal with the cafeteria and playground and school bus, this year the cubby and table and crafts will suffice.
This particular school district has been a bit of a headache for us; being our only child and first time entering public school with food allergies. It's gotten much better...since we retained an attorney to help. Still much better though - progress is being made and I can honestly say the people I have been in contact with certainly make me feel like Killian's health truly is in their best interest. Today I spoke with the school nurse and she informed me our request for a dairy free class will most likely be a "Go". When I asked for BOTH classes (Killian is a.m. and another group shares the same space for p.m.) to be dairy free - I could tell bricks were being put back up on that 'wall'. The meeting is next week, I won't raise hell just yet. If this were a peanut allergy, it would be a.m. and p.m. "peanut free" no questions asked. Again - baby steps. We have an attorney so I don't get over emotional (not that I'm like that! [sarcasm]) and flip out. It's amazing how calm I've been since this process began! Our attorney definitely earned his keep. We met him on a Monday, he informed us he will get a letter to the school in the "next couple of days", by Wednesday I had a phone call to meet the school psychologist. I called and emailed in June and was told the school had 60 days to reply. And they meant it. Very lucky to have Ken Ritzenberg in our corner!
Still dealing with new "firsts" and stress. Let's face it - the stress will leave when the allergy does! Which reminds me - Killian's blood work was still "off the charts", dairy count is over 100 meaning it's not going away anytime soon. Sorry for the scatter brain.
Football started tonight, flag football. It was fun and exciting, just like it should be for a 5 year old. Naturally I reached out to the coach as soon as his contact info was in my possession. Thankfully, ONCE AGAIN, we've been given a great, understanding parent to watch after our son. Coach is completely committed to keeping Killian safe, and informed the other parents we're a dairy free team. He insists I do not spend any of my own money on snacks and to just supply him with a list of safe yummy snacks and eateries. Normally, the teams have ice cream and a pizza party afterward. Our team is modifying that! I was blown away when I met him tonight, introduced myself, and his first response was that he let the league president know so the other teams we play are careful and wash up before playing us. I don't know the details of it all yet, but he mentioned it before I could, it was at the tip of my tongue! T-ball was easier. Non contact sport, the players only shared equipment (bats) with their own teammates. Flag football - now that's a LOT of different hands on everything. I'll be the hawk on the sideline. LITERALLY ON THE SIDELINE. So far, no parents have complained or approached me about it. Score!
One little thing that tugged at my tear ducts yesterday - Killian was showing my grandmother his new Epi-Pen carrier pouch. Enclosed in it is a card with instructions to administer the epi. He "read" it to my grandmother ("Gigi"). Killian knows all the steps because we've trained him (in case he's with someone else and he needs it, NOT to give it to himself yet) and also because he remembers Tony administering it to him last year. As he explained step by step to my grandmother I beamed with such pride. He then finished his instruction lesson with "so I don't die" and I left the room. He says it so matter of fact-like, with such confidence, as he should, but my god he's only 5! I'm glad he knows and understands - it's how he easily teaches others about it, old and young. I just wish he didn't have to. It's one thing to say be able to say it, but understanding it and at such a young age...I guess I'm the one who can't handle it. We see the fear too often, he gets it.
Okay, I'm done for now. Sorry it's been so long, we've been busy too. Pub Crawl for Food Allergies is 9/7 at 6:30, starting at Pearl St. Pub (downtown Albany)! Hope you can make it and help support our team - Bovine Intervention Our team goal is $3500.00! Let's do this!
Thank you for all your support! <3
http://www.foodallergywalk.org/faf/donorReg/donorPledge.asp?ievent=1062783&lis=1&kntae1062783=FA66ABA9EB74424C8CC11EE816E4A49D&supId=379100499
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