The week started out tough. Lily got a ‘failure to thrive’ diagnosis on Monday from the nephrologist. This is like getting (as one wise Rett momma so eloquently put it) a punch in the gut. Hearing those words, especially as a mom, well… the guilt and disappointment and anger is indescribable. I walked away from that appointment trying to not feel like a total failure as a mother. Thankfully my kid was being extra sweet and silly which helped shake me out of my funk.
The next day I got a video from school showing Lily holding onto the handlebars for close to 40 seconds while riding a bike. This is HUGE. Her hand function has slowly been improving over the past few weeks. I can’t post videos to this site so you’ll have to settle for a screenshot instead. If you’re on Facebook, I’ll be posting the full video shortly.
And then this morning, we had to see her pediatrician to get his signature for a Medicaid form. They do not make it easy to get, nor maintain Medicaid but holy cow am I glad that Trumpcare failed because I’m not sure what we’d do without it. But I digress…. We did a weigh-in at the same scale we used 5 weeks ago and according to the scale, she gained 2 pounds. It’s taken a lot of effort – and patience – for both Lily and her nannies, therapists, teachers, parents, etc. to get here. And we’re not done yet. She’s still 3 pounds away from where she was 6 months ago but she’s starting to gain it back.
How did she gain 2 pounds in 5 weeks? Well, Lily’s been on a steady diet of home-made mac-n-cheese, duck, tater tots, cupcakes, avocados, yogurt, pudding and pizza. I’m still slipping in super healthy stuff for her morning smoothies to ensure she’s getting the vitamins and minerals her body needs. But she’s basically eating anything and everything she wants.
In two weeks we are seeing the GI doctor to discuss further this ‘failure to thrive’ issue but I’m hopeful that the conversation will be a mostly positive one.
Holding on to the handlebars like a pro!
What a difference a day makes. Yesterday she could barely stand. Today she walked to school all smiles.
She was super wobbly when she woke (unfortunately this is quite common most days) and she only had a few tiny sips of smoothie this morning. But once I started talking to her about her day (school with friends, and then summer camp), she perked up.
I’m grateful for these mornings when she can walk to school. And it’s in these moments that I remind myself how lucky we are.
We have a few big doctors appointments coming up. Next week we are checking in with the nephrologist about the pee situation (which is still a pretty big issue). And then in August we are seeing the GI doctor. This appointment is the one I’m dreading the most. You see, Lily has lost 3.5 pounds since February. This is a lot of weight loss for her tiny frame. We will be discussing whether she needs a feeding tube. Her eating has not returned to the levels needed and it is concerning (to say the least).
I will keep you posted. In the meantime, we will continue to make the most out of this summer. This may just be my kids favorite season. And damned if we’re going to let Rett Syndrome get in the way of our fun.
Recently on one of the parent groups, a question was asked about whether or not it’s worth buying expensive supplements for your kiddo. I thought my response could be helpful to other parents on a similar journey so I’m sharing here:
I’ve been using Agape on and off for years. When I can’t find it or afford it, I use the stuff you get at wholefoods ‘child life’ I think is the brand. I also have used and am using a mix of other supplements for my kiddo on top of this. And have I seen results? How can you really know? And what results are you looking for?
My daughter isn’t ASD (autism spectrum disorder), she has a disorder that, among other things, can cause growth issues (i.e. head and feet and other body parts stop growing) and failure to thrive because of malabsorption in the gut. She also has sensory issues and struggles concentrating. She physically cannot sit still due her her disorder.
So what have I seen? Well one thing is that she is on the growth charts. And continues to grow (though her weight is very much on the low end of the charts, but so is mine). I also see that she is healthy. And is getting better at paying attention. But is it just because she’s maturing? Is it because she got lucky and doesn’t have the growth issues that the other girls with Rett Syndrome have?
I don’t know. But I’m going to keep supplementing her and ensuring she eats the cleanest and healthiest foods possible (she’s on modified GAPS) because it can’t do anything but help.
If you’re not comfortable paying for Agape, why don’t you try the child life supplement to see if it’s something your kid will even tolerate before investing in a big, expensive bottle.
This SN parenting journey is not an easy one. And I’ve realized that we can’t do everything all the time. So pick and choose the things you believe in and think can help your sweetie be the best kiddo s/he can be.
Long and lean, happy and healthy!