Another year, another trial

Happy (belated) New Year. 

This kid never ceases to amaze me. She went through so much last year and yet these are the smiles that we get. (See above photo for reference).

Last year she struggled with so many things such as: increased breathing issues, weight and height issues, mobility issues, challenges with her classroom setting and massive dental issues.  The last two problems thankfully were something that were relatively straightforward and remedied. The others, not so much. 

Regardless – when I look back at last year, I see it as a success. We had so many amazing adventures – from going on a Make-a-Wish trip to Hawaii to visiting our family in Florida to buying a weekend home (that has a pool!!!) to having the support that we need to manage our day to day (which is much more than one could imagine) and many other big and small wonderful things in between. 

Another important milestone she hit last year: Lily finally broke the 40 pound mark. She had been stuck at 37 lbs for over 3 years. We still have a ways to go to get her to a better weight, and we may never get there. But I’m learning to make peace with it as best I can. She doesn’t seem to mind. 

This year we have so many things to look forward to and be hopeful about. This kid is loving school, embracing her after-school therapies and is becoming much more vocal. We are seeing a lot of monosyllabic words shouted at the right times, often in cheeky manner. She’s been using her right hand relatively consistently to give a gentle pat or a hug (which is absolutely heart-melting if you happen to be the recipient).

And she’s starting one of three trials that are happening for kiddos with Rett this year. It will mean a lot more hospital visits and tests, but we are hopeful that this medicine provides her with some much needed relief. Even if I see a 5% reduction in her tension, anxiety, breathing issues, I’ll be happy with the outcome. 

And she is going to be 9 in less than a month. How is this possible? I had hoped that by this age, there would be a big breakthrough to ease the god-awful things that Rett Syndrome brings.  But we’ve not had any success. Yet.

I will never give up hope that things can get (even marginally) better for her.  If you were considering a birthday gift, the best present you could give her would be to support RSRT which is working towards helping kiddos with Rett. So if you are so inclined, you can donate here.  It all goes to the same place. Thank you in advance.  Love and peace and giggles.

THE CUTEST!!!!!