The answer is not so easy.
Cognitively - you know, the part you'd think would be gone very quickly in a severe neurological disease - she's doing really well. Better than really well - she's honestly doing great! She is sooooo very much one.
Bored of a toy? Throw it across the room! Unhappy with your current position? Fling yourself backwards! Want the toy your brother is carrying? Lunge forward and just rip it right out of his hands!
|even Colin - her beloved - gets the WTF face lol|
Think your mom is such a moron? Roll your eyes! (no, wait - that's how she is sooooo 13.)
|yeah, that happened|
(photo credit: Forever Fireflies)
She's hilarious. Honest to goodness hilarious. She loves being part of everything. She grins her toothy grin, yells and even squeals (well, squeaks) when she deigns to allow us to amuse her. She scrunches up her face, yells and even screams (well, screeches) when she doesn't.
(photo credit: Nicole Renee Photography)
And last Wednesday, Quinn did the impossible. She sat up. All.By.Herself.
|immediately following this photo, I promptly burst into tears|
Sitting could be considered a 'physical accomplishment'. And it is, to be sure. But Quinn definitely did not perform this trick using her physical prowess. Instead, she used her stubbornness. This baby weighs 15lbs total, about 1/4 of which is her abdominal mass (due to the enlarged liver and spleen) - that makes her really less than 12 lbs. She was 8 at birth and she's over a year old now. Her belly is so big you'd almost think she is growing her own baby inside. And her arms and legs are just itty bitty twigs. But the part of her that is working so well - her brain, her personality... her spirit - is what is driving her forward and it's awesome to see.
The part that is less than awesome is all the rest. Besides her weight, she is back to hardly keeping anything down. Her hair began coming out in clumps due to malnutrition and malabsorption. She is often irritable in between doses of Tylenol, and her abdomen is more than double the width of her shoulders (17" v 8").
Due to insurance, et al, the in-home palliative care visit was pushed back to May 14th - two days before Quinn's birthday. The physician was very nice and seemed to hear our needs and our wishes for Quinn. I spoke with her again just a few days later when Quinn had a terrible ear infection, just hours before we were supposed to leave for a weekend away and a pediatrician who was on vacation. The response time was great, she called in an antibiotic without having to see Quinn and we were on our merry way.
I received a message on Wednesday of last week - the same day that Quinn sat up - from the coordinating nurse for the pall care team. In it, she just said she was checking on Quinn to see how she was feeling. It was late when I got the message and things were crazy here (otherwise known as Life). She called me again Thursday morning before I had the chance to call her. After I yammered on for about 10 min about the ear infection, the nurse indicated she had another reason for calling.
Apparently over the course of the previous two weeks, the palliative care physician had been writing up her report on Quinn. Part of that included contacting Dr. Wasserstein - the (only) NPA expert - up at Mt. Sinai. And it seems that the two physicians agreed on the thing they were now calling to tell me.
"At this time, Quinn's needs would be better met by our Hospice program."
Knowing something and Being Told something are two very different things. Very different.
For those unfamiliar, there are some pretty standard conditions governing hospice eligibility. The overarching one - and quite frankly, only one that matters - is this:
A patient is eligible for hospice care when two physicians agree that the patient has a life expectancy of six months or less.
Six months. She just turned one year. That brings us to 18 months. One point five years. Before Christmas. Before Thanksgiving. And less than six months - probably before Halloween.
We have known this. We knew it from the start. Quinn was just not following the same track as the majority of NPA children. But oh my god, when someone tells you...
The admittance nurse came the following day. May 31st. The irony that my daughter entered hospice one year to the very date I was supposed to give birth to her is not lost on me.
|our first glimpse of Quinn, with the EDD of 5/31/2012|
I have not been doing well with the news. Kind of not at all. I actually had my first real public "losing it" this past Saturday. It was the first time ever that I actually said to Brett - and followed through - that we had to leave. Like rightthisminute.
I suppose there will be more of those to come. Before. During. After.
But right now, there's still This. And I'm really trying very hard to concentrate on the This.
(photo credit: Forever Fireflies)
|And especially This|