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.