For those that don’t speak French, that’s Merry Christmas! I can’t believe we are 3 days away from the New Year already. But you know what? I am soo glad 2017 is on its way out. Goodbye Hell year! But there are also a few things I am happy about from the past 12months… Learning about our genetics, being the big one. Talking of which, we just got Sam (9) and Eli’s (5) results. I was expecting that at least one of them, if not both would have 15q13.3 microdup, and praying to the angels above that no more 22q would pop up. Well, I was right about that. Turns out Samuel’s genetic composition came out all clear and normal, while Eli’s shows the 15q microdup. So that makes Dad and Micah for 22q DS, and Micah, Eli and I for 15q microdup. It’s funny because going in for testing I would have totally thought Sam would have been the one to get the Dx, not Eli… but I can totally see it in him too. The ADHD, the anxiety, the sleep troubles, etc. I’m happy it’s all done and over with and we can finally move forward knowing all this and how to help each and every one of us.
Since it’s Christmas time, what did everyone get? Did you have a good time? Did you visit friends and family? I want to know. Oh and did you make special meals for your allergy peeps? We had a party with my father’s extended family on the 17th like we always do each year. It was nice to see everyone. And then on the 23rd, we went to my parents house for Christmas Eve eve dinner and gifts. Since they were all having lasagna, I decided to make my own safe version for us 4 (Micah doesn’t eat)… It was gluten free, vegan and soy/corn free and no salicylates because we react to those fruits and veg. I made the cheese sauce in my amazing Bellini machine with potatoes, carrots, celery, leeks, etc. Sooo good, and you wouldnt even know it was full of veg! If you want to look it up, it is called That Cheese Sauce on CrunchWorthy blog. Anyway, good food was had by all, and then gift giving happened. Boys got new Lego sets and hubby and I got a few small things for kitchen and our room (new bamboo sheets!). It was a lot of fun… Then we came home late and slept in on the 24th. We did our own thing on Christmas morning, opening of the gifts done by 7am lol… boys are early risers. They said they had the best Christmas ever. Which I want to say a major major thank you from all of us to all those who donated. It wouldn’t have been possible without you 🙂 You rock our socks! ❤
As for Micah, he got a small kitchen toy set with bowls and plates and utensils and cups. He adores it! Pretends to make meals and eat. Aww! The boy so wants to eat, it breaks my heart. But he is absolutely adorable when he comes to you with a spoon, giving you some of his “soup”. He also got a wooden shape sorter cube, a big stuffed Skye (Paw Patrol) plushie, and a Paw Patrol game. He is in PP heaven! lol
Talking about Micah and food, I need to make a sad update… His little body couldn’t handle the peaches so much anymore since he got really sick in October and November. I knew the possibilities of losing a safe were real with FPIES, as we had already lost Butternut Squash like that, but after removal of Peaches for 1-2days, he had no more distended belly, no more reflux, no more joint pains and some weight gain that he hadn’t had in over 6wks. I tried again just a small portion on day 3, and all came back again 😦 So now we await testing because we are 100% certain the boy has MCAS. He actually just gave us a major flare up with the cold temps outside 3 days ago. He’s been in reaction mode since. Diarrhea, skin rash (the small pimples he always gets from reactions and hives), reflux, GI pain, flushing on cheeks and ears, and joint pain is back. Ugh! Everyone I spoke to online recently asked if we had tested him for MCAS, and the more I think about it, the more I agree. We thought maybe a yr ago, but now it’s obvious. He reacts to everything (!!) from foods, to fabrics, to temperature changes, air pressure, his own tears, plastic, etc. The boy cannot get a break. So we now wait til his reaction is over… give him a 1-2 wk gut rest, and then trial Moose meat broth for the GAPS diet until he sees Immunology end of January and demand for testing. Because I am positive with the right meds (just maybe even an H1 and H2 blocker and cromolyn) he would pass foods and not react as much all the time. And when that happens, we plan to retrial peaches and see if it works. He loooves those! We also are running out of the frozen peaches we had received so the timing is ok. Until we can find fresh ones, he gets a gut rest. As for the H1 and H2, those are just Zyrtec and Zantac. So if Immuno will Rx those, we are off!
Oh and I don’t think I updated about the most important date of all this month… Micah is TWO!! Happy birthday my sweet little boy. I can’t believe you are already starting your 3rd year with us. You are so full of joy, it’s contagious!
You now weigh about 21lbs13oz (still on 3rd %) and are 32.5in tall (3rd % too). Tiny but mighty! You don’t talk but you let us know very firmly with signs what you want. Your favorite of all? PLAY! You have about 70 or so signs now and you are doing great. We are so proud of you! We love you! And we truly really hope that by your next birthday you have some foods and a nice big vocab to go along with it 😀 You are working so hard with all those docs to prove to everyone that 22Q, 15Q, FPIES, CHD and possibly MCAS and ASD aren’t the end of the world. Big big hugs from mama ❤