Tuesday, November 25, 2008

When you enter the world on Christmas Day, is it any wonder that your life proceeds with one miracle after another?

G P started the day going to a 4 month old“well baby visit,” the day ended in the Pediatric Intensive Care Unit where he was diagnosed with infant leukemia (ALL).

For the next month, G lived with his parents on the Pediatric floor, receiving the intense Induction of what would be 1 year of chemotherapy.

The treatment came in cycles, one week in the hospital 10 days at home. More often, within a week of discharge G would be back in with a neutropenic fever, requiring a 7 day round of potent IV antibiotics.

Mom and Dad missed many experiences associated with baby’s first year. For his safety, G was isolated from other children, parks, stores, and church. When he finally got to ride on a park swing, it was a big deal.

With a total of 123 nights in the hospital, 8 nights in the ER, 14 surgeries under general anesthesia, 19 blood transfusions, and volumes of chemotherapy drugs, G made it to his 2nd birthday happy and strong.

We're coming up on his 4th birthday and he is still amazing and healthy

Monday, November 17, 2008

Learning and growing

G is awesome. I am always amazed at the details he notices and picks up on. These two pictures illustrate how he pays such attention to details.

Here he is fixing his tool truck. He has the truck propped up on the wheel of another toy so it will be elevated. He cracks me Up!

He is using his new "Bob the Builder" brick wall game. Each time he set up the wall, he would follow the pattern exactly. Then he would set it up and put on his sun glasses. I asked him why he wanted sun-glasses. He said, "For Safety."

Tuesday, November 11, 2008

Waiting Game

So we know we want a CI, we know we can get a CI, we just have to wait. This is a tricky part. There is nothing more to decide or discuss really, just wait. The insurance will take 2-4 months to approve the expense of the surgery. So we just wait. This is so anti-climactic.

Saturday, November 1, 2008

Happy Halloween

We went out to the lake and the kids were super cute.
G and P went out in a canoe, too precious. I'm so glad we get to have these great memories.

Sunday, October 19, 2008

Letting go of pride

We found out that G is a candidate for a CI in his left ear. We obviously wanted one enough to ask about it and take him to be evaluated. But even finding out that he could have one, it was hard to decide if we wanted one. I had built up this image of myself as a good parent. Part of that identity was my acceptance of G's deafness and accommodating it by learning sign language. Getting a CI felt like a betrayal of that ideal.

But we want one. We want him to have a better chance of getting intelligible speech. Maybe this is naive, but we want to devote less effort to speech. Right now he just doesn't have access to most speech frequencies. With a CI, maybe the same amount of speech will have greater effect.

And we still use sign language all the time. So we have to let go of that pride. That's probably a good thing.

Tuesday, October 14, 2008


Today we found out the verdict from the implant team. Wow. Heavy. G is eligible to have an implant in his left ear. This is so huge. I can't wrap my mind around what that means to have a decision of eligibility from the people that actually decide this. We had heard stories of people with more hearing getting a CI. Because G has a sloping loss, it is hard to say what his hearing loss is.

But now we have the go from the implant team and they are submitting the insurance paperwork.

I'm somewhere between shouting it from the rooftops and keeping it a secret. What now, indeed.

Friday, October 10, 2008


I wanted to make jam, and like always, I realized I didn't have quite enough sugar.  Rather than go to the store I asked G to calculate ...