As usual, Lily was a superstar in the hospital.  Almost literally.  She’s got a big fan base on the epilepsy floor and her smile helped us get a private room for our 48 hour vacation (hospital visit) which included lots of spa treatments (i.e., pee-pee bags, blood draws, and blood pressure checks, oh my!).  The longest of the spa treatments, which takes over an hour to complete, is the scalp massage (i.e., application of the 24 leads on her pretty little head).

This girl, yet again, taught me a lesson in bravery and strength over the weekend. No tears (for her) during the blood draws; no complaints when the pee-pee bag went on (though I think she may have tried a bit of rebellion as she pooped when the bag was on, rendering the urine specimen useless); and she slept well through the night (even though she preferred sleeping on me to the hospital crib). She also surprised me by independently standing up on the chair and then trying to climb up the arm of the chair.  I had a bit of a heart attack; she had a cheeky, proud grin on her face.

And really, the fact that this kid can climb up, and stand up on padded furniture – independently – is a miracle.  It hit home on Sunday, when I went to my first Rett parents meet-up.  The amazing Dr. Djukic presented on clinical trials for alleviation of symptoms, the executive director of the Rett Syndrome Research Trust (who is also a Rett momma and now a friend) discussed the research behind getting to a cure, and a PhD from Cambridge University spoke about eye gaze technology.

The conference room was bursting at the seams – people flew in from all over the country for this day.  The family sitting next to me was from West Palm Beach (we have a playdate when we head down to visit our family!).  Their daughter is 4 and is in a wheelchair.  Another mom I met from Orange County, NY told me about how her daughter developed normally until age 2 and then regressed to a state of immobility (also in a wheelchair, age 5).  She, and many of these other sweet girls, can’t even swallow anymore.  My heart breaks for these families.

I feel somewhat out of place at these gatherings and on online forums.  The Rett community is amazing.  But I don’t really feel like I fit in.

Anyhoo… we were back at the hospital on Monday to see the neuro to discuss next steps for Lily’s treatment.  She was on 10mg of prednisone (a steroid) for a month and now we are taking it down to 7.5mg a day.  In a month, we have to go back to the hospital (only for a visit, not for another EEG – praise the Lord!) to check in and discuss if the change from 10 to 7.5 made a difference with her abilities (she is much stronger and more vocal since being on the oral steroids – BUT this may also just be a good period for Lily – she has her ups and downs and is this an up period which coincides with the steroid treatment?  We do not know.)

In the meantime, we will continue to be visiting preschools, keeping up with her 30 hours a week of therapy and getting her evaluated for assistive eye gaze technology.

And of course, I will be working (I’m getting a new employee reporting to me from Mexico City!) and trying to sleep when I can so I can have all the energy needed for this amazing, sweet angel face.

Thank you ALL for all your love and support.  Always.

Love,

C and L