The past few months have been extremely stressful so writing posts has not been a top priority. However, I didn’t want to leave you hanging for too long. I’m proud to say that Lily has been showing improvement in many areas. Her appetite has come back (for the most part), her peeing has normalized (for the most part) and her gross motor function/walking has also returned (for the most part). Her breathing is still an issue though that too seems to have gotten better.
I have been obsessed – OBSESSED – with her caloric intake. And I’m pleased to say that a steady diet of pizza, cheeseburgers, hot dogs, rice pudding and vanilla yogurt coupled with her morning smoothies (which has a pediasure base and some raw veggies that I slip in) has helped her fill out and get stronger. She still has more weight to gain but many days I’m finding myself not completely stressed and uptight about her eating. It’s helped that most days she’s opening her mouth for food and is genuinely interested in eating again, though her former diet of uber-healthy food has screeched to a halt. Whatever. The kid is eating.
But I can’t completely relax. We still have days that are difficult for her. Really difficult. Heart-breakingly difficult. And I’m trying to shake the hangover of what she went through these past few months but I can’t completely. Rett Sydrome is always lurking around and we just never know when it will pounce. I can’t make this the focus of my attention as it will destroy me.
So I remain in hope. And there’s good reason. Last month two significant announcements were made about Rett research. One was regarding a research trial on a drug that ameliorates a handful of painful symptoms in our girls. And the other was regarding the path toward a cure using gene therapy. Awareness-raising and fundraising are now more important than ever.
Until the cure comes, us warriors will continue to battle against the day to day struggles of Rett Syndrome, and we’re going to do our best to have as much fun along the way.
C and L
I’m so glad to hear of your recent successes together, and am deeply jealous of Lili’s diet! May you have more good times — and fewer hurdles — ahead.
Ray Goldberg! Thank you! Lily and I are sending healing, healthy vibes your way my friend.
So glad to hear some news!!! And good news at that!! Let her eat cake and ice cream and all the fun stuff!!! Prayers and hugs to both of you……Bravo Lily!!!!!
I will return soon with more of my pasta!!!!!!!! Keep up the good work my two sweet superheroes!