The "Right" Decision

Dan took Sophie to her check up today and her cardiologist shared some great and not so great news with us. As you may recall, Sophie was born with PDA, Pulmonary Stenosis (both were fixed in August 2011), 2 VSDs, and ASD. Well, the 2 VSD murmurs are now 1 and the remaining 1 is smaller in size. The PDA closure device looks great and so does her Balloon for her valve.

The not so great news is that the ASD hole is 1 mm bigger than 2 months ago. Sophie only gained 1lb in 2 months and Dr. Butto strongly believes that if we wait to do surgery that the hole may continue to get bigger and then the only option he will have is open heart surgery, which we have been avoiding for 14 months! The office scheduled Dan and I to bring Little Miss back in on June 20th and we would schedule surgery at that point, or we call tomorrow to do it sooner.

Dan and I were just talking and we both feel like that if we wait until the 20th that we are that much closer to Sophie having to have open heart surgery. Just typing it out is terrifying. So, what do you do as a parent? Do you wait until the 20th of June in hopes your baby grows more so her body is big enough for the device to go through her arteries and have a successful surgery, or do you schedule it now knowing she isn't quite big enough and the device might work but cracking her chest open is still an option?

The decision we have made is that I will be placing a call to Sophie's cardiologist to schedule her 2nd heart surgery. What makes this even harder to digest is that Dan and I are missing Denton and Quinton. In 9 days in their 3rd birthday. Last year on their birthday I waited with Sophie in her hospital room for surgery the next day. This year, I am terrified we will be taking her in to surgery on that day. I feel like we can't win!

Scorn Not Her Simplicity

I saw this on Mowatwilson.org and I wanted to share. I didn't write this myself!

See the child
With the golden hair
Yet eyes that show the emptiness inside
Do we know
Can we understand just how she feels
Or have we really tried

See her now
As she stands alone
And watches children play a children's game
Simple child
She looks almost like the others
Yet they know she's not the same

Scorn not her simplicity
But rather try to love her all the more
Scorn not her simplicity
Oh no Oh no

See her stare
Not recognizing the kind face
That only yesterday she loved
The loving face
Of a mother who can't understand what she's been guilty of

How she cried tears of happiness
The day the doctor told her it's a girl
Now she cries tears of helplessness
And thinks of all the things she can't enjoy

Scorn not her simplicity
But rather try to love her all the more
Scorn not her simplicity
Oh no
Oh no

Only she knows how to face the future hopefully
Surrounded by despair
She won't ask for your pity or your sympathy
But surely you should care

Scorn not her simplicity
But rather try to love her all the more
Scorn not her simplicity
Oh no
Oh no
Oh no

Mowatwilson.org

I was put in contact with Dave Curry, he lives in Las Vegas and he and his wife have a son with MWS. They decided to develop mowatwilson.org to help others connect with one another. Because of this site, I was able to meet Sarah, a little girl that has MWS and live in Northville, MI. I can't explain to you what it was like.

I was asked to send Sophie's story in to them so it could be published. Well, I did it. Who knew I would be writing our story out...again, but this time for a different purpose.

Take a gander, it will help you learn more and become familiar with the faces of MWS.

http://www.mowatwilson.org/sophie's_page.htm