blessings from boston

thursday, december 15th, i got a phone call. it was from the rett clinic in boston. 

the same clinic i have been anxiously waiting to take leah to for four months. the same clinic where i have called and left countless messages for an appointment. the same clinic where i have spoken to three different people all saying they would call me back - or have so-and-so call me back - to make said appointment. and then i wait. and wait. and wait. so the second week of december, when i finally called and actually spoke to someone and was actually able to make an appointment, i was half ecstatic. the reason i was only half ecstatic was because the appointment wouldn't be until february. three months away. seven months after we moved and almost a year after her last rett-specific appointment. not good. i asked to be put on the waiting list if someone canceled, but wasn't holding my breath as the doctor we needed to see was on holiday out of the country and his schedule would obviously be jam-packed when he returned.

so, when i got a phone call on december 15th telling me there was a cancellation for the next morning at 11 am and could we come?, we all know the answer was a resounding yes. leah skipped school {she's not nearly as risk-averse as her mother was when in school} and we drove two hours to boston just the two of us. i would have invited ryan, but he was frolicking in the warm california sunshine all week...not wearing a coat...and sending me pictures of sunsets on the beach. nice.

since leah has health insurance that is restricted by state, i knew i needed to get cross-border permission. i was assured this wouldn't be a problem since there is no rett clinic in new hampshire, so we have to go out of state, but hadn't called yet as our appointment was three months away. i got the phone call at 3:00 pm and spent the next two hours making phone call after phone call to people who thought i was crazy and wondered why i was calling them. i should be calling this group or that doctor or this insurance company or that  hospital or this person, didn't i know. aaaaaaaaaaaaaaand, all the phone numbers listed on my two insurance cards apparently don't work when calling from a cell phone? so i had to find other phone numbers. after a lot of tears, and a little bit of yelling {most of it directed at no one but the air, but some of it at leah, sadly, after which i locked myself in a room while she watched cartoons}, around 4:50, i finally got on the phone with a friendly girl named amanda who works in ohio at the company that manages my insurance company. she was the most helpful person in the universe. and kind to boot. she was the only person who didn't make me cry after hanging up the phone. thank you, amanda from ohio. really, truly, thank you.

the next morning, we were out the door by 8:00, parked {in the wrong parking garage} by 10:20 and in the waiting room in the neurology department of children's hospital boston by 10:45, ready to meet with dr. omar khwaja, the director of the rett syndrome program there.

leah got her weight and height checked and she's still over 30 lbs. actually teetering around 32. woot woot! and then dr. khwaja called us back. 

the first thing he said was, "so, what brings you here?" my first reaction was to say, "my daughter has rett syndrome, you dummy." but i resisted and, after remembering that he probably sees more than just rett syndrome patients and has a lot on his plate, i explained our situation. he actually remembered hearing about a four year old girl moving from california to new hampshire and was excited to finally meet her. 

sadly, he didn't send us home with a pill or cream that would cure rett syndrome {high hopes, i know}, but after asking lots of questions about her background and current situation {as every girl with rett syndrome is so, so different}, he actually sent me home with three great pieces of information - one more valuable than i could have imagined. 

first, we chatted about her seizures, which honestly was the main thing on my mind and the one symptom i really wanted to figure out and try to control. we chatted about different medications and the options we had - what was working, what wasn't. and finally settled on a solution that will hopefully work for now. 

second, there is an AAC {augmentative and alternative communication} specialist who works with the girls who come to the boston clinic and helps them get the devices or services they might need to help them. this person obviously knows the specific needs of those with rett syndrome as well as the ins and outs of insurance and trials and all that other baggage that comes along with getting those services or devices. and we can take part. hooray!

third, as we were leaving the office, dr. khwaja said, "leah looks great. she really is quite a healthy little girl and is really thriving. i can tell you are working hard to do the things you think are best for her and she just looks great" {or something to that effect}.

i was a bit taken aback, but kind of wanted to cry. sometimes i get so lost in the overwhelming day-to-day of taking care of a little girl who can't do the things other little girls can do, that i forget she really is "improving" and "thriving." she seems to truly love life and i know for a fact that i truly love her and do try to do what i think is best for her. it was really nice to hear those simple words from someone who sees others with similar challenges and battles on a daily basis. 

we'll be back in six months to follow up with dr. khwaja about our hopefully still- happy, healthy, thriving miss ribbons.

during the appointment, we realized leah was due for another ekg to check for long qt syndrome as her last one was one year ago. he made a simple call to the fourth floor cardiac unit and made an appointment for us right on the spot. seriously? when does that ever happen?! we checked in, waited for maybe 5 minutes and then went back to get an ekg with nurse leah. yup, miss ribbons thought it was pretty cool that she and the nurse had the same name. nurse leah was just as awesome as patient leah and had us in and out, painlessly, in under 15 minutes. 

we headed home via trader joes {of course} and a pit stop at a hotel parking lot just off the freeway for me to take a cat nap as i was going to fall asleep on the road. we made it home just after 5:00. it was a loooooooooooooooong day, but one we'd been waiting for for a loooooooooooooooong time.