Wednesday, October 12, 2016

Because I Must Document....

I don't blog anymore, but enjoy blogging....

Because of this I decided I needed a quick "day in the life/update on Max's allergy treatment" post, to one day look back and remember this phase we are in. Some days it feels like a crazy one, and surely I will be able to look back fondly one day 😳
Right now Max is undergoing a treatment called oral immunotherapy, OIT for short. It's a process of gradual desensitization to his severe peanut and tree nut allergies. The goal in the end is tolerance of these foods, and freely eating with no problem. He doses with increasing amounts over the course of 22 updoses (always observed under close watch with our Dallas based doctor, and then will come home for approximately 2 weeks on that dose. 

Some of the fun (not) facts about OIT are as follows. He has to dose on a full stomach, and cannot elevate his heart rate for two hours following each morning and evening dose. He has to be watched extremely closely the first hour after dose to ensure he isn't having a reaction, all the while me pretending I'm not being helicopter mom as to not panic him. Every cough, sneeze, itch or eye rub could possibly be a first sign on anaphylaxis.....or nothing at all. I have to be the judge. 

This has been hard for me. Week one we landed in the ER because he suddenly had red eyes and sneezing with a super runny nose, and it turns out he was getting a virus. Another fun fact is that this daily nut exposure is not nearly as receptive to a weak immune system....so any regular childhood cold or illness could set off a reaction. Overall he's done very well so far. We've had few symptoms, other than uwhat his doctors are calling "expected reactions". Nothing scary yet. Thank you Lord!!! He also hates the taste of the pecan flour, and peanut solution which I can understand. I finally tasted it, and is worse than you could imagine! Imagine peanuts mixed in grape cough syrup 😷 He also has to  eat a capsule full of pecan flour twice a day that I've started making into chocolate for him via a candy mold.....so life is crazy, to say the least. Very little down time, lots of stress, and frequent trips to Dallas and back in one day. Oh yeah, there is also the 7 months pregnant thing! 😉
(Also excuse typos because I probably won't proof read this) 

My day looks like this.

7 a.m- My alarm goes off every morning before the house wakes up to have my coffee and get Max's breakfast made, and dose measured out and ready for him. Also pack lunches, fill water bottle, organize school folders ect...

7:30 a.m- I fight his exhausted little body out of bed so he can have 20-30 minutes to wake up and eat (always a battle) so his tummy is full for his dose

7:45/8:00 a.m- force his liquid peanut solution down (he's a trooper), and next he eats the pecan flour that's hidden in a chocolate/sunbutter candy. Levi is awake now too.

8:00 a.m- set alarm for one hour so I can know when I have clearance to drop him off at school. 

8ish/8:45 a.m- feed Levi/ feed myself/get dressed/dress kids and brush teeth, all while watching Max closely and making sure he stays put on the couch. Heart stopping about 15 times a morning when he jumps, runs, or looks like he might have a symptom. 

8:45 a.m- leave for school (T/TH) both kids go, (Mon-Thurs) just Max. Wait in car for one hour alarm to go off, make him drink a tons of water...and walk him to class to see what is on the agenda for his second hour of observation since his monitoring is now out of my control. His teachers have amazingly agreed to keep class low key from 9-10am to allow him to get to sleep in a little longer in the morning. Amazing!!!

9:00 a.m- 1:15 p.m- Me and Levi start the day. Playdates, cleaning the house, laundry, library, museum, grocery shopping...the usual. Lunch in there somewhere. Sometimes with friends, Mimi, or just hanging at home. 

1:30 p.m- pick up Max, and run home for a quick rest time. They watch Nexflix, play in playroom, or  play with the iPad. I hide in my room and have a snack. 

2:30 p.m- get dressed, gather goggles and towels, and head to swimming lessons. 

3:00-4:00 p.m- swimming lesson are daily right now.

4:15 p.m- head home and start dinner. Boys almost always play outside together and this is my favorite time of day because I don't have to worry about Max, observe him, or make him sit still. He can just run and play and have fun!! He gets to forget about all this for a while! 

5:30ish- dinner and playtime with dad or baths. 

5:45-6:30- I clean up dinner, and start making the chocolate molds for the evening dose and next morning. 

7ish- Jammie's and wind down while I give Max his evening dose. We usually pick a show or a movie to watch as a family so everyone is calm, and I set my alarm again for an hour.

8ish- alarm goes off and the kids beg for a snack, then we brush teeth and take them to bed!

8:30ish-9- Clean up the house, sir and make sure my poor baby in the womb has had some water and is kicking...

9:30-12 a.m- hang out with Cody, watch TV and relax! 

Thats a wrap!! Day in our life right now!



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