Comments on: Maybe Baby

By: Desty

Desty — Fri, 27 Feb 2009 15:55:07 +0000

Great to hear an update! Sweet Ramona will do great:) I will continue to keep you and your family in my prayers. Miss you all!!

By: Carolyn Scott

Carolyn Scott — Wed, 11 Feb 2009 14:10:33 +0000

I keep up to date with Ramona and Simon by way of Vicki but let me tell you how amazed I am by the strength, resiliency and good nature of your sweet children. I am sending love to your family from the Scott family. Happy Valentine’s Day.

By: Marilyn Woodin

Marilyn Woodin — Wed, 11 Feb 2009 01:57:04 +0000

Grandpa Wayne and Grandma Sue—have told me about Ramona and I have been keeping her in my prayers. I have just found the website—again—-and wanted you to know, as I pray for Ramona and you, that there is a little verse I recently heard which said, “When life gets really hard I imagine God holding my hand”.
I am sure life is hard for you, as young parents, but I know—God will be holding your hands-mw

By: Jane

Jane — Tue, 10 Feb 2009 18:40:18 +0000

Hi Kelly!

Yes, Ramona has an RV to PA conduit. In the early days they were calling it a “patch”, which is probably what you remember from our conversation, but it is in fact the same thing that Jack has. Unfortunately Ramona’s arteries have not responded to the conduit in the amazing way that Jack’s did. Boo! He is looking so good, by the way.

There was early talk of a shunt for Ramona, but the arteries are way too small for that still. Thanks for asking!

By: Kelly

Kelly — Tue, 10 Feb 2009 17:43:49 +0000

Hi Jane,
I am glad that they are giving it another try. Hopefully this one will be successful. Can I ask if Ramona has a RV to PA conduit? From our earliest conversation way back when I thought I remembered hearing that she did not, that they went the route of a shunt instead. Just curious. Regardless, I will pray that they are able to widen those arteries this time around. That is what just sucks about the pulmonary atresia part of our kiddos CHD’s. I always remind myself that it is life-long maintenence. So, you are certainly not alone in your worries.
Just remember, never ever give up!

Thinking about you all.
Kelly (Jack’s mom)

By: Shannon

Shannon — Sat, 07 Feb 2009 18:34:49 +0000

Hi Jane
I think it is encouraging that they are considering giving it another try. Have you sought your own second opinions from other cardiologists and surgeons?

Our support group met with the head of surgery and cardiology at our Children’s Hospital. They emphasized the importance of seeking second opinions and of the diversity of experience and outcomes from institutions.

It is not personal, its just that the field is so young that nobody knows what is best or even possible and so it is good to ask around.

Shannon

By: kriss

kriss — Fri, 06 Feb 2009 15:10:09 +0000

Maybe you should just go ahead and give that Simon a kick. Just a little one. See what happens.

Sounds like your cardiologist is a great “guy.” I pray that in his humility God will give him wisdom for our little Mona. We’re praying.

By: Fr. Bill and Bev Johnston

Fr. Bill and Bev Johnston — Fri, 06 Feb 2009 14:45:17 +0000

You and your beautiful children (and the docs)are in our hearts and our prayers. I hope I will meet Mona and Simon in person some day. Bless you all.
Love, The Johnstons

By: peggy

peggy — Fri, 06 Feb 2009 14:23:55 +0000

How polite of Simon to use the magic word! And I’m glad to hear that there are some options in your future.

xoxo!

By: jackie lipuma

jackie lipuma — Fri, 06 Feb 2009 04:01:51 +0000

Sounds pretty positive the docs feel they have options – and that sweet little pistol Ramona is up for it. How gentle and endearing that she said “Good job” to that technician – and strangely appropriate – she has endured more than many of us ever have or will with such spirit – God, You certainly do use the weak and meek to confound the wise and strong. How humbling. Thank you.
And Simon is the best kind of trouble – purely irresistable.

Thanks for the update Jane. I am praying.
Love,
Jackie