As we get ready for Thanksgiving, as you might imagine, we are so profoundly thankful for our children. That our heart child is doing so wonderfully well, and that our hh child is such a great little boy. We are very much looking forward to spending time with family, including many out-of-towners. That's what the holidays are all about, after all.
And speaking of being thankful, one of the CHD parents - Kate - on our list sent out an email about why her heart child is thankful. It touched me, and I hope that Corey feels the same way when he gets older. Here is the post:
"Evan (2nd grade) had an assignment at school today to write about the one thing he is most thankful for. He's a bit sketchy on the details, but it's told from his point-of-view. I sent this to the docs who have helped get us to this point, so I figured I would share with all of you, as well... because you all have helped me get through, being the parent of a "heart child". Here is his story:
My Superman Scar
When I was born in 2000 I had a broken heart. I had to go to three doctors to get it fixed. I had to take sleeping medicine so I wouldn't feel my chest get cut open. They had to sew my chest closed. When I was at the doctor's, I got pictures of me with people. I had my pictures developed and put into my heart book. Now I have a heart book to look at when I want to and I can show people my pictures. I am glad that I didn't die and I am thankful for everyone who helped me.
by Evan"
It's rather humbling, isn't it? Happy Thanksgiving!
More heart info., and Corey says.....
Dr. Schulman has discussed my case with another top cardiologist at Hopkins (oh we are so fortunate to have this hospital in our backyard!), and they agree that the biopsy of my heart is unnecessary. It would not change my treatment, nor my "excellent prognosis" (Dr. Schulman's words). I like the words "excellent" and "prognosis" when they are used together like that. I've been so afraid, and now I am moving toward hopeful. There are still questions remaining (how long will my recovery take, e.g.), but I will go back to see Dr. Schulman again in the next month or so, and perhaps we will get more answers.
My meds have been adjusted up to 50 mg/day (double dose), and I am now struggling with fatigue as a result. However, my heart rate at rest is now in the 60s, which is terrific. Hopefully I can push through.
And now on to lighter notes! Corey has been cracking me up lately with the things he says. It's time to report a few of Corey's statements. Here we go.
1) This weekend we went to Sydney's birthday party. Happy Birthday to our beautiful niece! Corey was fascinated by the cake, and he is still talking about Sydney's cake as well as what kind of birthday cake he might have for his own party (in four months). Last night he announced, "When I get my birthday cake, I'm going to share it with everyone. Papa asked Sydney for a piece of her cake, and she said, 'No.' When Papa asks me for a piece of my cake, I'm gonna say 'Yes!'"
2) At my mom's house, he had a jellybean which was apparently "too spicy". When he told me about it, he said, "Mommy, it was a dud jellybean."
3) When I asked him how many pieces of candy he'd had, Corey replied, "None. Zip. Squa-DOOSH!" I think he picked that last term up from his daddy.
4) On a long car ride, Corey announced, "Mommy! I have to pee pee on the potty!" So we stopped at a gas station, and his daddy took him in to do his business. When he came back, Corey announced, "Mommy, I took a BIG whiz!"
5) Corey likes to say "Feed me!" or "Carry me!" or "I need a wipe!" Of course I'd rather he fed himself, walked by himself, and did his own wiping. So one night when he said, "Mommy! Carry me!", I sighed and lamented "Feed me feed me, carry me carry me!" Corey surprised me by chiming in, with the same tone, "Wipe my butt wipe my butt!"
He's a funny kid.
Update on my heart
Dr. Schulman, my cardiologist from Hopkins, called me to deliver the results of the cardiac MRI. He said there are two areas of scar tissue in the middle of my heart that are consistent with incidences of viral myocarditis. To prove this beyond a shadow of a doubt, I would need the biopsy of my heart. However, Dr. Schulman wants to discuss my case with the other Hopkins cardiologists before putting me through this test. He's not sure the risk is necessary, given the information presented from the cardiac MRI.
So what does this mean? I'm still waiting. But, I did ask Dr. Schulman flat out if I am going to live to raise my children, and he said yes. That was a relief, because when I wake up in the middle of the night, sometimes I'm terrified that I won't be around to take care of the boys. And they need me! And I need them!
Dr. Schulman also asked me to send him several heart rates to determine whether or not my meds need to be adjusted, so I did that as well. I am hoping that, with time and the right cocktail of meds, my heart will recover. I guess only time will tell. I have to say, though, that this whole experience has been terrifying and exhausting. At some point we'll do a follow-up echo, and I am just hoping against hope that the next echo will show some improvement in my ejection fraction.
Corey Riding His Trike
Here is our heart child, riding his trike. We find this amazing, given that this child has half a heart. That he can do this inspires us and gives us great hope for the future. Go Corey go!
We voted!
This morning we packed up the kids and headed to our voting place at 7 AM. We thought it would be good for the kids to come and help us vote. We thought Corey would enjoy pushing the buttons and getting a sticker when it was over. We thought we could entice Corey with the offers of free doughnuts from Krispy Kreme if you arrive with your sticker. Now that it's over, I just have one question: "What the hell were we thinking?"
Damian and I apparently woke up this morning without brains. We were the only idiots there in the record-long line with toddlers. About 20-minutes in to our wait, Corey was wailing "I want my DOUGHNUT! NOW!" After about 10 minutes of that, I announced in a loud voice, "Mommy wants a new president!" At least that made the people around me laugh. I'm not sure it made up for the 20 or 30 dirty looks I got, though.
Where was Mason all this time? Riding on Damian's hip, waving at people like a future politician, and happily wearing his witch's hat. He was so good.
Thank goodness the presidential elections are only held once every 4 years.
Halloween
Pictures of the Halloween reading circle at the library and Halloween itself at Chez Corey are up!
(Click image to enlarge) We had most of the cast of "The Wizard of Oz", as you can see. The kids were adorable as The Cowardly Lion, Dorothy and The Scarecrow, and the rest of us showed up as Glinda, The Wizard, The Wicked Witch of the West, WWW's sister WWE, The Tin Man, and Aunty Em. And, because every good cast needs a Bee Keeper, that's what Uncle Shawn went as. We had enough to worry about in the poppy field with WWW's poison, so Uncle Shawn made sure that the bees were handled.
A good time was had by all - the pics tell the story.
