Quick blog update…Megan and I are completely exhausted at the moment so this will be short and sweet.
First, before I forget: Lumy and William, you are our heroes. Thank you so much for taking care of Ainsley while Megan has taken Meara to countless doctor appointments while I am at work. You are family to us. We won't forget this. Also, to the staff at Foothill, the meals are keeping us afloat. It is overwhelming. The generosity has taken a huge load off of Megan to not have to worry about preparing meals. Kathyrn, we won't forget you arranging all of this and taking the time out of your insanely busy schedule to make sure we are taken care of. You are the best.
Meara had a MRI with contrast today. That's the long one where they have to put her to sleep. While she was asleep they changed the dressing on her PICC line. Afterwards Megan and Meara met with Neurosurgery and Infectious Diseases. It was determined from the MRI that there is absolutely no infection (so they have taken her off of all the antibiotics). Still doesn't explain the temperature. They also determined that she does in fact have hydrocephalus. She will have a shunt installed and it will require another surgery. The shunt will have a valve at the top that is inserted into her brain with a catheter that runs through the ventricle in her brain down through her body and will empty into her abdominal cavity. The shunt will be permanent. She will need replacement shunts (more surgeries) as she grows and she will most likely require a shunt for the rest of her life.
We are freaking tired. We also have very special people helping us out. You know who you are and don't believe for a second that we could do it without you. From Lisa and Barbara slinging home dinners to the house so I can drill my front bike tire into the asphalt on the way to and from work (ultimate stress buster), whether it's Lumy and William taking on Ainsley and treating her as their own, Suzanne and Ana Whitman watching the girls while Megan and I step out for Christmas shopping, or Kathryn making sure that our tummies are full.
Jan Smith dropped off a hand written note to me at my classroom this week. This is what it said: "You never know how strong you are until being strong is your only choice" – Bob Marley
Exactly. People keep saying…you guys are so strong. Baloney. We are not superheroes. We have no other choice than to wake up and face this every day. I'm not being sarcastic. I'm being real. Any one of you would do the same. Every single one of you would get up every morning, put on on your big boy (or girl) pants, make some coffee, take a big breath, and take care of your child. So maybe we are strong, not by choice…out of necessity.
Much love to everyone….and peace.
Aaron & Megan