A week after we got Eloise’s diagnosis, a wise fellow named Jeff sent Brian and I a podcast suggestion: Awesomeology (GRATITUDE) with Neil Pasricha. (Yes, for all of my [Transfer]Wise colleagues, THAT Jeff.)
I was still in shock and in a deep, dark hole of grief when he sent us that fateful message. But, at one of my middle of the night pumping sessions while Eloise was asleep and I was making my banana, coconut milk oatmeal for breakfast (back when I ate stuff like that), I listened to the episode. I can’t remember even half of what was in there but what did stand out was a practice the guy had. Every night, around the dinner table, everyone in his family would say one rose, one thorn, and one blossom.
- Rose = Something great that happened
- Thorn = Something not great that happened
- Blossom = Something that has the potential to be great that happened
The guy speaking said that by sharing these 3 things every day in his family, it brought them closer together.
Ever since then, multiple times a week, I do this same practice with my dear friend Gina here in Estonia. We record voice messages on Whatsapp where she and I share our “rose, thorn, and blossom.” She’s German, so she generally shares exactly one example of each — because she has a compulsion to follow exactly what the directions say. Since I’m American, I often share more like 10 roses, 1/2 thorn, and a few blossoms — because I cannot help but find the bright side (most of the time).
So I thought today I’d try that format.
A note to new readers
If this is your first time here, I just wanted to give you a heads up.
I write way too many details in these updates that no one in their right mind would possibly care about — unless you’re my mom, Brian’s mom, or you have a kid with a similar chromosome deletion.
Which means that, for around 98% of you reading this, it’s gonna be pretty boring. Unless, for some reason, you’ve been following these weekly updates like it’s an online version of a telenovela because the world is in chaos right now and it’s just nice to read about life that isn’t revolving around politics or infectious diseases or the Olympics (which I heard were happening, or happened, or maybe they’re still happening — I read so little news I don’t even know that much).
Regardless, don’t feel guilty if you find yourself not caring about a bunch of this. It doesn’t make you a bad human, it makes you a normal human.
Besides. I write this, in large part, for me. Putting together these updates every week helps me recall what happened at all (things do tend to blur together), celebrate what went well (cause sometimes I forget), and make plans for where I need to focus next (because that’s a good idea).
So let’s get started. :high five emoji:
Roses (the great stuff)
Surprise! She had a few long naps
On her 6 month birthday, Eloise shocked our socks off by sleeping for longer than 33 minutes. Not just slightly longer, but a lot longer.
This is the first time she’s done that in maybe 2 months? 3 months? And, gosh darn it, I got so much housework done it wasn’t funny. I cleaned her room, organized some stuff, took out clothes that were too small for her from her dresser, went through the next size clothes for her and put those in her drawer, got laundry started, cleaned the kitchen, did the dishes, washed my pump parts, went through a pile of junk, and even peeled and ate a pear. Man, that felt great. I just kept creeping in to check on her from time to time to make sure she was still breathing. Finally, after 2 hours, I woke her up.
The next day Eloise did the exact same thing. But I woke her up after 2.5 hours.
I was hoping this might be a new habit of hers, but she didn’t do it on Saturday or Sunday or yet on Monday so, let’s see. At least now we know she’s capable.
Here’s crossing our fingers if/when she starts consolidating her naps that she’ll still eat as much or more. Because, I’ll be honest, that’s something I’m a bit concerned by.
The Magic resource facebook group
Last week, in Eloise’s 25 week update, I mentioned I wished I knew how to find the right answers to my questions — even though there probably aren’t any — with someone who specialized in Eloise’s nuances.
Almost immediately, I got something almost as good.
The same day, by coincidence, a moderator finally added me to a facebook group I’d asked to join (and forgot about) weeks ago. It’s full of nearly 8,000 parents of kids with rare chromosome deletions. So, even though it’s not Eloise’s exact deletion, I can search the years of archives to find out if my topic has already been covered. And then see what advice other parents gave.
It’s a godsend. And just in time. (Now I just need to make the time to do some serious searching.)
Our special needs parents network is growing
As part of that facebook group, I met yet another mom of a 2q24 deletion kid who lives in Arizona. Her little girl is 6, and she did a great job explaining some of their process of starting solids and what she might have done differently in hindsight. (I’ve now heard a few times that, interestingly, some of the 2q24 deletion kids didn’t get their first tooth until around 1.5 years or even later. It’s so fascinating that even their bodies physically delay some things!)
In addition, this week a special needs mom from Tallinn reached out again and we spent some time chatting on the phone. She’s been “in the [disability] system” for awhile with her own son and had such useful information on how we can get more help for Eloise.
I’m just feeling so thankful for other parents, and that our network is slowly growing.
We started solids!
You might have seen the blog post about it already, but we gave Eloise her first real solids meal on her 6 month birthday. So far we haven’t seen any noticeable changes in her pain levels, so I’m hoping brussel sprouts is okay. What we added next was lamb bone broth — something I had not personally trialed yet. So I added it to my diet, too, on Sunday.
We shall see how that goes. We’ve got another few days before we move on to the next food to trial. (I’m adding one food at a time for 3 days at the moment.)
If she is allergic to natural food chemicals, it’s risky because natural food chemicals increase with longer cooking times (and we made the broth in a crockpot over a period of 12+ hours). But bone broth apparently has so many incredible nutrients in it that it’s one of the most gut-healing things we can give her. Just crossing our fingers it’s okay with her little body and it does some good.
Brian is home with us fulltime now
Another huge rose, in case you missed that on the blog, too, is that Brian will be joining us fulltime at home for the next year-ish. It just feels so good to know that his “fulltime job” will be lending his incredible empathy, kindness, and problem-solving talents to help raise Eloise this year. We’ve spent maybe 10 of our last 14 years of marriage working at the same place and noticed that we both do better when we’re working together. I assume raising Eloise will be the same.
Her pain isn’t getting worse
On the food front, we’re approaching almost a month of the same diet. On the other diets, her pain often got better at first and then got way worse again. The good news is that, currently, her pain doesn’t seem to be getting worse. So… that’s something. (Although it also doesn’t seem to be getting any better. Sigh.)
I got a massage
One of the great things is that Eloise is growing, but that’s also been harder on my back. A few months back I learned that one of our neighbors is a masseuse (among her many other talents). So on Friday I had my first massage in maybe 2 years. Boy did that self care feel good.
So many wonderful humans
They say in times of disaster that you should “look for the helpers.” This week especially has felt like that as I have just felt so surrounded and supported by some new and some old helpers who have offered whatever they were happy to give — time, energy, space, wisdom, skills, research, support. Monika. Dace. Christa. Evelin. Fiona. Yevhen. It does take a village.
Thorns (stuff that’s tough)
Her “flare episodes” continue
This one is tough. On average, she has a single, painful 30ish minute flare episode almost every other day (sometimes a little more frequent). Except for last Wednesday, before we had even started solids, where she had 3 in one day. It used to be that we could often directly correlate it to a food. Or from being around too much noise or too many people. But now… ? We’re at a loss.
Is the pain flare from overstimulation? From food I ate? From the solids we gave her? From the position we feed her so she got in too much air? From the time of day? From something else entirely?
It’s hard to know. Which means it’s hard to know if any new food I introduce to myself or her is the culprit. So… we just continue on, praying and crossing our fingers we aren’t making things worse.
She hasn’t had a poo since Friday
For a kid who has taken a poo after every single feed since birth, it’s really weird that she hasn’t gone since Friday. This past week she had gone less already, so it’s not necessarily related to starting solids. But it’s still hard for me to know when to worry. Especially since constipation is one of the things they note happen often in her deletion.
Feels like it’s getting harder to feed her
There’s this app called “Wonder Weeks” that is supposed to tell us when Eloise is going through a developmental leap. According to the app, not only will she learn new skills during this time period, but there will be all sorts of behavioral markers that show she’s in one.
Until now, we never noticed any difference with her during these supposed “leaps”. But this one, well, I’m hoping that maybe she is just going through a leap. Because, according to the app, she’s been in this leap for around 3 weeks already. And one of the signs is that they might want to eat less.
So, well. She’s eating less. Or, rather, she seems less interested in eating. Her average, week by week, has been steady the last 3 weeks — and it’s not great. She’s eating around 20-25% less than what is recommended for a baby her size.
What’s so confusing is that this is the kid who has insisted on constantly eating since she was born. Early on it wouldn’t be unusual for her to eat 30-40% more than what her daily recommended intake was — even when food was causing her tremendous pain.
But now that her pain is the most managed it has been for a long, long time, she’s suddenly less interested in eating. And her weight gain, or lack thereof, is showing that.
I’m really hoping and praying it’s just a temporary developmental leap, like the app says, and she’ll be back to her ravenously hungry “I want to eat everything in sight” in a few weeks again, when this leap is over.
She might be starting to refuse Brian again
Despite the fact that Brian is amazing (he’s a far more patient human than I am), it’s starting to look like Eloise might be losing her feeding patience with him. Meaning, often she’ll hardly eat when he’s with her, and then if I take over she’ll eat a bunch.
Both of us are a little worried at the implications if I have to constantly step in to feed her. I’m hoping that we’re wrong, we can figure out a way to fix this, or it’s just temporary.
Blossoms (stuff that could become great!)
Confirmed. I’m nicer if I have time off.
Man I’m not a very pleasant person if I haven’t had enough time to myself. And poor Brian gets the brunt of this. But the sunny side is that, firstly, I’m aware. Secondly, that I’ll have more time off now that Brian is home. I’m just hoping I can quickly figure out what makes me relax the easiest so I can be nice to Brian consistently in the mornings.
Feeding specialists exist in Estonia
One thing I had been trying to find here in Estonia is someone who specializes in feeding — the position and angle the child is in, the muscles needed to eat, how her swallows work, what to do because of her high palate, etc.
Estonians ask me if I mean a speech therapist or a nutritionist. We have something here called “Logopeed”, which are speech therapists. And, in the states, speech therapists often double as feeding therapists. But, so far, it didn’t seem like any of them really knew much at all about the actual feeding process if I was understanding correctly. (It’s a tiny country of 1.3 million people — it’s hard to specialize.)
However, I did find out from another special needs mom this week that there are speech therapists in Estonia who do specialize in feeding because she saw one last week. So I reached out to that therapist with some hope! Unfortunately, she said she was too busy to see us, and hasn’t responded to my request for other reccomendations.
So, friends in Estonia, if you know of a logopeed here, can you ask them if they specialize in kids with feeding troubles? Or if they know a logopeed who does? We would so love to find one.
We have plans on how to proceed
With Eloise seemingly eating less, or, rather, less interested in eating, Brian and I had our first brainstorming session this weekend. We talked through what we had both noticed during our time with her, what might be the root cause, and possible courses of action depending on the root.
It felt so nice to talk about things, spend a little time in our normal listening prayer, and then make the decision together. (Because, before Brian had been home, I was trying to do all this on my own, where I always felt like I needed perspective beyond mine just to check my logic.)
So here’s our current plan and the steps in which we’re trying them.
- Follow her cues (solving for accidental force feeding or over-focus on feeding) It’s possible we’ve just been focusing too much on her eating, so we need to give her some space. Rather than focusing on a schedule where she gets up, does physiotherapy, diaper change, and then we start feeding her, instead we will just play with her or let her play until she expressly starts giving us cues that she is hungry. And, when she seems disinterested, we will actively try not to offer her food. (And just hope and pray that by the end of the day she’s somewhat close to a normal feeding amount.) We started trying this one on Saturday night, and we’ll give it a few days before we re-assess and move on to the next plan.
- Lengthening time between feedings (solving for not hungry enough to eat well) The two times she had a long nap, she seemed to wake up really hungry and ate quite quickly. Though I’ve tried a few times to lengthen time between when she would eat, we could do more to try to lengthen that time and see if it helps.
- Thicken her milk (solving for making the process less painful) She prefers eating by spoon over syringe, which also seems to reduce her pain some. If pain is why she’s less interested in eating, it’s possible that if we thicken her milk it will not only help with her reflux and keeping the food down, but make it easier to feed her by spoon. Normally the thickeners recommended are either grains she has a high likelihood to react to, or are specialized products that are only found in the States so we’ve been a bit hesitant here. But, recently, we met a new wonderful human who is a retired pediatric nurse from Seattle Children’s and mentioned we could use potato starch. So that might be what we try.
- Add formula (solving for giving her more calories for less work) If she just, frankly, doesn’t want to eat a large volume, then we might be able to increase her calorie intake by adding formula to her milk.
- Nursing (solving for giving her a less painful eating experience) Maybe she’s just not very comfortable with the eating process since it is more likely to give her reflux. By now it’s been almost 2 months now since I stopped nursing her via that odd, bottle-shaped nippleshield. During that time was the most pain-free she had been, so maybe that method is the way to go again. THe problem is that she wasn’t gaining as well through nursing as when I switched back to exclusive pumping. But, well, she’s not gaining much at all now. So it can’t hurt to try.
- Medicine (solving for short term pain reduction) The proton pump inhibitor (PPI) medicine reduces the amount of stomach acid and, thus, in theory reduces reflux and, thus, pain. The problem with it is that it’s not good to keep kids on these medicines for longer than 2 months, and with Eloise’s deletion, reflux is often an issue past infancy and far into childhood. So it would only be a temporary solution at best. On top of that, PPIs are notoriously hard to wean kids off of, and often make food intolerances worse. So this is still more of a last resort if nothing else is working.
- Feeding tube (solving for long-term growth plateauing or weight loss) I can think of as many reasons for a feeding tube as I can think of reasons against. I know that by getting her one we can have peace of mind that she’s getting enough nutrients, can get more time in our day back so we can do more with her development, and she can still continue eating by mouth during the day and we do feeding tube feeds overnight. But I think I am, for reasons I cannot quite figure out yet, still stubbornly set on trying everything else until we resort to a feeding tube. If she stops eating altogether or starts losing weight or doesn’t gain anymore, then this will be moved up on the list of considering. Or maybe I’ll have a magic revelation that removes my stubbornness and we’ll decide for the feeding tube much sooner.
Lamb change (+ broth)
The one food I have been eating that was not low in natural food chemicals was the lamb. After reading through the Royal Prince Albert Hospital Allergist resources for the fourth time, I realized that frozen meat is actually higher on natural food chemicals. The reason being, if I understood correctly, because often the meat wasn’t frozen until well after 2 days. (Meat that was freshly butchered and eaten within 2 days is low in natural food chemicals, it’s the aging that increases the amount of chemicals in them.)
I reached out to the kind local farmers who we have been ordering lamb from. She confirmed that, yes, sometimes the meat was in the fridge for up to 7 days before freezing. So she kindly agreed to freeze ours within hours this time. So we are just starting on lamb that was freshly frozen and, hopefully, lower in food chemicals. If food chemicals are a problem for Eloise, then this might help.
Additionally, as I mentioned before, I made a bone broth that I have just started giving to her and myself. It’s supposed to work wonders for gut health and food allergies, although its long cook time means it might be harmful in the food chemicals arena for Eloise. Sigh. Regardless, wish us luck it helps!
Seeds (upcoming stuff this week)
This week is nuts and Brian and I are just bracing ourselves to get through it.
- Family doctor’s appointment
- Brian’s 2nd vaccine shot
- Chiropractor
- Physiotherapy
- My company’s summer days (it’s a tiny company, so the gathering isn’t large — cases are still pretty low in Estonia, but our event is outside and I’ll likely stay masked up, just in case, while Brian stays in our room hanging out with Eloise)
- Several hangouts with friends
If there wasn’t so much jam-packed into our schedule, we’d have taken this week to start actually learning about one of the topics we need to at least explore. Like Elimination Communication.
Hugs from us 3
Eloise The Tiny Fighter 
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