Sunday, March 8, 2009


Drew and Carter have been sick on and off this week. It’s been a lot of holding, comforting, and coddling our boys, but we think we have reached the summit and are on our way back down Cranky Mountain.

Meanwhile, we received two letters yesterday, one from the Department of Developmental Disabilities telling us we’d be receiving a check to help cover costs of some adaptive equipment for Emily (We’re going to get her an outdoor swing for sure). The other letter was to let us know we had officially been granted a waiver to get Emily some Medicaid benefits, which may mean we can get some nursing help…

Last night, while Aimee was putting Carter and Brenna to bed and I was folding laundry upstairs in our room, Drew was downstairs straightening the living room to prepare to play a game with me before bed. He comes running upstairs full speed, shouting, “Emily is having spasms!”
Uggh. Our sweet Emily, who has been so strong and seeming to benefit so much from this diet, had gone 27 days without a real seizure. We’ve been measuring formula and food to the tenth of a gram, testing her blood and urine multiple times daily, having tons of appointments, and changing all her medicines to account for their carbohydrate content. Basically, we’re throwing all our chips in at this last chance for Emily to develop.

That is exactly what was going through my mind as I sprinted downstairs to expecting to see what we’ve feared each day since we’ve seen improvement in Emily’s spasms. I could hear Aimee quickly finish with Carter and Brenna and then rush down to my side.
There I was glowing with pride… Emily wasn’t having spasms at all. Our little cutie had been moving around significantly and caught her head under her crib activity center and her legs were stuck between the slats. She was upset, but the kind of upset that makes a Dad weep for joy. She’s crying because she got stuck while moving around.

I then looked at another source of pride. Drew came running to us as soon as he felt a hint of something wrong. He’s only five, but he’s experienced so much more. He’s watched his Mom and Dad share their love four ways instead of just focusing on him. In the last year, he’s endured 67 days when Mommy went to the hospital and sometimes didn’t come home for days, while Emily received all the attention. He’s watched all his small toys become banned from the areas where babies might get to them, as many of his older toys became Carter’s and Brenna’s. He’s watched us cheer on Brenna as she gains language and hold Carter whenever he cries. He sees us stop everything to run over and watch Emily smile. Don’t get me wrong, he’s as spoiled as can be and certainly gets his share of attention. But what an incredible little man he’s becoming. He’s been reading words like crazy; read 16 pages out of a book he’d never seen before to me the other night.

How proud I am.

Brenna says “Hi Dah” each time she greets me in the morning. Carter laughs and smiles enough for all of us. Emily is seizure-free for 28 days and was holding her head up quite a bit while we went on an outing today. Drew is an emerging reader and a terrific all around kid. Aimee can do anything and she loves me.
I could not ask for more.


Hope said...

What a beautiful post! He is such a sweet little boy! You guys are doing so great. I'm so happy to hear that Emily is doing better.

Shannen&Makena said...

That put tears in my eyes, you guys are just such a great family and great role models for your children.

Rachel said...

Well that definitely made me cry! You and Amy definitely have many reasons to be proud!

Anonymous said...

WOW!!! As a grandmom and mom I am proud of the whole family!

How super that Emily was just stuck and not having a seizure and how great that Drew realized something was up and ran to get you.

Love you all! MOM

Marie said...

Wow. We are back on 7 West and it happens to be initiation week. We have been reviewing the diet success stories with the nurses. I pulled up your blog and was absolutely thrilled to hear such good news for Emily and her diet success.

What an amazing big brother to boot! It amazes me how well these children adapt to the life of a sibling with seizures.

All the best for continued success - and pride!
Marie, Tom and Grace (and Rita)

Kim said...

What wonderful news!!! So great for such amazing parents to have equally amazing children!