Ellie’s One Step Forward, Two Steps Back

It’s been one of those days – that has lasted over a month. We have been living the ‘one step forward, two steps back’ life with Ellie. Through these setbacks though, at least there were a couple wins. I’m going to hold on to those wins as we struggle with getting our sweet girl back to a happy baseline.

Our High Hopes

The last Ellie update had great promise of things to come, and I had such HIGH HOPES! Blueberries were a pass, and she was loving them! Cauliflower was a pass and that added some great textures to work on with her eating therapy. She was actually asking to eat! No chewing, but swallowing her beloved blueberry ‘powder’ and puree.

The One Step Forward

I am going to go through the past couple months overview fairly quickly, because why belabor all these points that have come and gone.

We started working with the eating therapist again now that she had foods to actually eat (read more about what her eating therapist does in this post). We have a great eating therapist! But such SLOW progress. I will say after about two months, now when we ask Ellie to “crunch her blueberry with her molars” she will -sometimes. She also asks to eat things (unfortunately foods that she can’t have) so she can “Crunch with molars peeeese”. Hearing a two-year-old say molars is absolutely adorably by the way. Having to tell her she must wait until she is older to have all the foods she asks for, that’s heartbreaking.

The Two Steps Back

The unfortunate side of our summarized update is a bit longer than the positive. We re-trialed the Splash (see previous splash trial here) and had almost an immediate, “Well that’s not going to work” – bummer! But thankfully she is still maintaining a good growth curve, which I am always thankful for. This allows us to continue with her infant formula until she is eating solids. We do have to have some labs checked soon, just to make sure she is getting all the correct nutrients. Thanks to our Registered Dietitian for following that for us!

Sadly, for over the past month, she has been experiencing eczema, nausea and GI discomfort symptoms again. Her increased swallowing is back, hesitancy to take bottles, discomfort and wanting to be held more frequently during the day, and the most challenging of late – lack of sleep.

Loss of sleep

This sweet girl has been trying her best to be the fantastic sleeper that she was but struggles to go to sleep some nights. She then cries in her sleep or wakes up during the night. Most mornings she is up between 3:30-4:00, and after trying to go back to sleep she ends up calling me to her room in tears. So, we start our day then, is that considered morning or is it still night? I’m going to go with morning, it makes me feel better when I am running on 1-4 hours of sleep a night, 5 hours on a great night (we don’t have many of those lately)!

Two steps back days

This lack of sleep has caused me to have many of ‘those days’. For example, this was my day yesterday. I lost my phone – it was in my hand. I tried making my beloved weekly oatmeal and somehow lost the milk I had already poured into a measuring cup to add – no idea where it went. Then to just be the shining star on top of this malfunctioning tree, came the girls bath night. I ran the bath like normal and while it was running, I went into our bathroom to grab something. While I was in there, I heard the water running and assuming it was the shower, got undressed to get into the shower. Just to turn around to the shower door to see no water. I then realized I was still running the girls bath water in the OTHER bathroom. So, I got dressed and yes, I did make it back before the tub overflowed thankfully! I sure hope you feel better about your day now. If you didn’t randomly get undressed for no reason, I say you are KILLING it! 😊

No more Cauliflower

Okay back to my reason for sharing all of this – sweet and stubborn Ellie and her ‘two steps back’. To try to improve if not alleviate her symptoms, we removed cauliflower from her diet. Back to one food, blueberries. She improved after about a week, for a few days. Shortly following our bit of respite from worry, she started having symptoms again. Her symptoms don’t scream chronic FPIES necessarily but seem to be more fructose intolerance now. Although why she grew to tolerate the fructose for a bit, but then didn’t again is beyond me. I am being consistent with my blueberry varieties now in hopes that it was some random blueberries that had more fructose than others. Who knows – goodness knows I don’t.

Up next – Cranberries!

If, no, not if – when! WHEN we can get her back to her steady baseline that we had achieved for a few months prior to all of this, we will trial cranberries. Tart, yes I know, but the only food in the family with blueberries and they are supposed to be tolerated with their level of fructose – cause they aren’t sweet! I am hoping to roast them and somehow try to bring out any of the natural sweetness to counter the tart, but who knows, maybe this is another food she will love and pass. It could happen! (‘Angels in the Outfield’ anyone?)

That’s it, you are caught up again. Not too much to share here due to our current constant stale mate. As things improve *fingers crossed and prayers said* I will share that wonderful news here, until then I will be in the kitchen looking for the lost milk.