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Thursday, February 28, 2013

News from Texas

We're making arrangements to get Cliff in to Texas Children's Hospital in Houston to have open heart surgery.  After consulting with lots of doctors two things have become as clear as perhaps they will be in Cliff's case.  

1) Cliff's condition will lead to congestive heart failure if left untreated.  The doctors would expect to see signs of heart failure by 18 months and see heart failure at some point between 18 months and 3 years.

2) The possible options to treat Cliff are very limited. One option is to wait and hope that Cliff's pulmonary arteries get bigger, which is unlikely given that his pulmonary arteries today are the same size as when Cliff was born.  The other option to is have open heart surgery.  The surgeon will add material to Cliff's pulmonary arteries in order to increase the circumference of the arteries to allow for more blood volume to pump through which will hopefully decrease the pressure in Cliff's right side of his heart.  It also has the secondary effect of hopefully allowing for future growth of the pulmonary arteries on their own.

Because of Cliff's condition every surgery has some level of enhanced risk, but the doctors are very hopeful that this procedure can be done without too much risk to Cliff.

There are no guarantees that this will work, but as the doctors have referred to layout of Cliff's heart they have become more hopeful that he may someone who would respond positively to this procedure.  Given this outlook we've made the best choice we think is possible after much research, discussion, and prayer.

Now comes the difficult part of just trying to tie up all of the loose ends that accompany this decision.  We've been working with insurance to try to get this covered.  They have confirmed that no doctor in Arizona has ever done something like this which makes Texas Children's hospital an option for us...sort of.  Through a couple of omissions in our insurance plan documents there are a couple of overarching questions about coverage.  We are hopeful that within the next few days those issues will be resolved and we can start to plan for our trip to Texas.

We are so appreciative of everyone's help and assistance.  Big thanks if you have already purchased a cookbook!  And if you haven't, and would like to buy 1 (or 50) we would love to sell them to you!  :)  We will still need to raise some money in order to make everything work for this Texas plan and we certainly appreciate your support.

Huge Thanks

We are so grateful for all the wonderful people who have helped us, are are helping us through this experience.

Our families have been great support systems for us and have given so much of their time and their talents to benefit Cliff.

We also have so many good friends who have given way more than we could have possibly imagined, sometimes a moment's notice.

To everyone we offer a heartfelt thanks! We really, truly could not do this without you.

An Inspiring Thought

Here's one quote that inspires us.
"There is no growth in the comfort zone; there is no comfort in the growth zone."
If I could figure out who to attribute this to I would, but the Internet isn't quite sure who said it.

Contact us

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