I took Riley to Kaiser Redwood City this morning for the blood test to measure his PT/INR. I was up at 4:30 so I could get a ride in before I woke him up in time to hit the lab by 7:15. It was the perfect time to go - no line for check-in and no waiting for the test.
The lab technicians always give the kids little stuffed beanie animals. This morning Riley picked out a white seal and a moose. He decided he'd like to wrap them up and give them to Carter for Christmas, so we secured them away in his backpack. Riley was really brave, only a few tears when the needle went in. He was in great spirits afterward and I took him for his traditional post-test donut. We had plenty of time before school so we hung out in the donut shop and I had a coffee. We had a nice man-to-man talk, or as Riley corrected me "man-to-son talk."
Riley was at school and in the classroom before the second bell. Hopefully we'll be able to do home testing soon.
Thursday, December 11, 2008
Brave boy and the blood test
Posted by Ken Norton at 12/11/2008 01:39:00 PM
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THAT is one great looking donut. And of super cute little boy, of course! :^) We're glad to hear he ended up in great spirits.
Thanks for the update!
Love,
Babs, Jonathan, Naomi &
Vivian
I am so proud of you both...What an awesome time. GRAMMY and Wayne
Dear Nortons,
I just wanted to send you a note expressing my appreciation to you for sharing your family’s struggles and triumphs.
Our oldest daughter, Sarah, was born 15 years ago with similar heart problems. A BT Shunt at 5 days, a Glenn at 1 year and a Fontan at 5 years. Through those first many years we felt strong and confident in our knowledge of the situation.
Two years ago she began developing problems; swelling, diarrhea, headaches and vomiting. She just laid around, unwilling or unable to do much of anything. This time however, we felt somewhat alone and lost in our lack of information. Family and friends can wrap their minds around heart defects, but lethal intestinal issues with little casework are difficult to understand. We have spent the last 24 months riding the roller coaster of waxing and waning. Promising medications soon became as effective as water.
Sarah recently ran out of medicinal options and we were preparing for the takedown, when at the last minute, her doctor suggested trying Viagra, as it was originally invented as a blood pressure medicine. She has seemed to be in remission for the last 5 weeks. Where she has been doing better, we haven’t been in a hurry to get her blood tested to tell us otherwise. So, if you ever hear of others struggling with this unrelenting PLE, tell them about the little blue pill.
Well to the point of all this. In my search for answers, which has been relatively fruitless, I came across your blog. As strange as this might sound, this has been a connection for us. A lifeline of sorts. You and Riley have provided a glimmer of light in our isolation.
Thank you,
Steve
PS. Each time I read a new entry, I say a quick prayer for Riley and your family.
Priceless, simply priceless!
I don't know you, but I want you to know that I'm praying for your sweet son, and for you. He sounds like a brave little man. May the peace of God hold you all close and bless this Christmas for you.
Hi Suzanne and Ken
I always check on Riley and was saddened to hear about this setback. It was odd that just yesterday morning I was trying to figure out how to get my yearly Christmas card to Dr. Karl, figuring he was long gone from UCSF. And then I read your blog and see that he has gone to Melbourne. Makes me sad.
I do hope that this issue gets resolved. Riley deserves it.
Dina
Oh, I am so bummed to hear that you are having issues. We are in the hospital right now trying to recover from Casey's Fontan. Our very favorite cardiologist just moved to UCSF, and we miss her and love her. Maybe you'll get a chance to meet her!
Thinking of your family and always checking in...
Jane, www.RamonaMae.com
He definitely has the looks of a brave little man!
I keep looking for your latest news and hoping things are going well. We are related - Virginia Norton Beach- daughter of Clarence,brother of Albert.
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