At times, it feels like the “problems” never stop. We solve one problem, then another pops up that’s just as big. Or bigger.
I guess that’s life with Eloise. No rest.
Sigh.
Brian and I keep remarking, “Darn it. For like 3 weeks there she was actually eating almost like a normal baby. Eating quickly. Eating nearly enough. We had extra time in between her naps to hang out, play with her, read, maybe even go on short walks. But now we’re back to the feeding difficulties dance where getting food in her takes almost the entire time she’s awake. Dag nabbit.”
Which means going places with Eloise is almost out of the question again unless it’s a necessity. Because we can no longer count on me feeding her in the car while Brian drives — ’cause solids is pretty much the only thing she’ll eat.
First time visitor?
If you’re new here, then a post like this will probably be a bit dry and confusing for you. For blog posts full of struggles, triumphs, and the raw feelings we’re working through as new parents to a special needs baby, you’re better off diving into all the non weekly update posts. Like Not your normal birth announcement, I want to choose her, A big change in our lives, Who defines ‘normal’ anyway?, Re-defining hope, A threat we never saw coming, Control is an illusion, I realized I have a superpower, No wonder…, Chapter 2: A non-fairytale start, or Jab 1 — A Mum’s dilemma among others.
Bad eating continues
The bad news?
Her bottle eating has gotten worse and worse each day. I mean, it’s abysmal. She should be eating around 100-130ml per feeding. Instead, it’s more like 20ml. Those teeth must hurt her something fierce.
The good news?
She’s now eating a little more solids than recommended for normal 8 month-olds. And, last I checked, is actually gaining some weight instead of losing it.
But, overall, she’s pretty happy. Which is what’s almost confusing. The pain must be bad if she can’t eat by bottle, but it cannot be too bad because she isn’t very fussy.
I don’t know.
And how are we doing, you ask?
Since her weight gain is okay (not great, but okay), we aren’t too worried as long as those numbers keep going up. We’re just really really hoping that her two little teeth will push through enough at some point that she’ll go back to eating “normally.” Because it’s a bit exhausting to have all our energy going towards getting food in her again.
We’ve tried every method you all have suggested to help with her teething. Although she seems to like some more than others (chewing on a big chunk of frozen pear is her favorite), none of it actually is helping her eat more. :shrug:
Guess we just have to ride out this wave of teething. I hope this isn’t a neverending year long phase as she cuts tooth after tooth after tooth.
A pretty major food trial is going well
Although we do have something exciting. At least for me. And for her, too.
Since the very end of July I’ve been on the RPAH (Royal Prince Albert Hospital) Elimination Diet. The plan is meant specifically for people with food allergies/intolerances and gastrointestinal issues (as well as babies who are reacting through breastmilk). Some people have trouble digesting natural chemicals that are present in many foods. Which means you eat many foods that have a chemical in it, so it’s a slow build up over many days before you reach your threshold and have a reaction. Which is why the diet gives foods that are very low in the 3 main naturally-occurring food chemicals (salicylates, amines, and glutamates) to eat for 3-6 weeks to get your system reset. After that, there’s a plan on how to find out which food chemicals are actually a problem for you.
It’s taken me awhile to get to this place but, thankfully, I’m on day 6 out of 7 of a diet high in salicylates to see if Eloise reacts. Salicylates are in every fruit known to man (except pears, if they are peeled) as well as most vegetables and basically all spices and hot drinks.
Photo 2: We introduced beets this week, as a part of the salicylates challenge. Other than pink urine and poo, no noticeable changes in her. 🙌🏽
Photo 3: Since we spend way more time feeding her solids, the fact that she doesn’t really fit into a high chair has become a problem. Thankfully, a family from the Estonian Facebook group for special needs parents had a chair that will hopefully work. They will bring it to Tallinn next week.
I’m cautiously optimistic since she hasn’t reacted yet to the high salicylates. Although, to be fair, we’ve had several foods that she hasn’t reacted to until the very last day, so you never know. But, if all goes well then next, we’ll challenge amines (which is found in browned/charred/grilled/long roasted food, leftovers, pork, chocolate, and ripe bananas), and then finally glutamates (Chinese food MSG is the biggest one there).
I was telling my mom today that I just keep hoping that maybe I’ve been delusional, that Eloise doesn’t have food intolerances at all and she’ll “grow out” of whatever immature GI issues she has and this will all be a bad dream.
A girl can dream, right?
But we’ll see. I’m hopeful.
Help has arrived
Oh. Speaking of my mom.
Today was the first time Eloise met any of her 6 grandparents (except through a few video calls) in person because my mom and stepdad have come to Estonia for a 2 month stay. Everyone’s pretty excited.
We’re hoping to slowly ease my parents into helping out with Eloise so that, over the next few weeks, Brian and I can tackle some big projects. Like building Eloise a closet, cleaning out our garage and entranceway, and getting rid of a bunch of stuff we no longer need.
So far, so good.
And a thank you
By the way, I cannot explain what deep appreciation I have for everyone who reads our posts. Whether you comment or not or come here occasionally or read every blog right after I post, I cannot tell you how much less alone I feel.
Our “village” looks different than those of our parents and grandparents when they raised their own kids, but I’m grateful for it.
Hugs and all our love,
Mallory, Brian, and teething Eloise
Eloise The Tiny Fighter 