Thursday, August 1, 2013

Surgeon update...

.... So, we are waiting (with anticipation) to hear from the scheduling department in Boston as to when our pre-op (MRI, heart catheter, blood work, vitals, meeting with our cardiologist and surgeon, etc) and surgery date will be; it should be early October.  In the mean time, we are so grateful for how God has chosen to reveal who should perform Grace's next open heart surgery.  Our Boston Cardiologist, Dr. Marx, called me a few weeks ago in the evening to discuss Grace's upcoming surgery date and when I asked him about potentially switching surgeons, I was floored by his response.  He said that he would be willing to talk to Dr. Del Nido for me to see what his thoughts were.  At 6:45 the next morning, he called me back and said that he had been thinking more about it and that it would probably be more compelling coming directly from me, so he suggested that I e-mail Dr. Del Nido directly.  Dr. Marx went on to bless us with his unwavering support and encouragement.  He said that if he had even the vaguest sense that Dr. Del Nido was a better fit for Grace, he would have suggested a switch without me ever having to bring it up.  The reason he was willing to support us reaching out to Dr. Del Nido is because he wanted to make sure that we felt heard and had peace about the whole situation. He went on to encourage me and ask about how David was doing and commented on the great impression that David made on him while he was in the hospital with Grace (when I had to go home).  So... seconds after hanging up the phone with Dr. Marx, I was sending off the e-mail to Dr. Del Nido.  His response came later that day and he very graciously said that he would be at a huge disadvantage if he stepped into Grace's case at this point, since Dr. Pigula has seen Grace's anatomy first hand (when he had her chest open for the last surgery) and knows her case.  He also said that he has full confidence in Dr. Pigula, but would be happy to review Grace's case with him and Dr. Marx.  David and I have complete peace that Dr. Pigula is who the Lord has hand selected to operate on Grace in October.  There really aren't words to express the magnitude of that peace that can only come from God except to say that it must be the peace that He talks about in Philippians 4:6-7.

6 "do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."

So often, when you have a sick kiddo (like Grace) you can feel like you are carrying the weight of the world on your shoulders (how to provide the best care for your child, advocate well for them, protect them, etc) and that is a burden that we weren't created to bear in our own strength.  It can be mentally, physically, and spiritually debilitating when you feel responsible for all aspects of your sick kiddos (and your healthy kiddos too for that matter:-) well being, which makes me so grateful for the truth found in Mathew 11:28-30.

28 "Come to me, all who labor and are heavy laden, and I will give you rest. 29 Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. 30 For my yoke is easy, and my burden is light.”

Here's the deal, our praying village...  please remind me of these powerful truths when I'm in the hospital and broken because the roller coaster feels like too much to bear.  Please also continue to pray us through each step of this journey because we are not above reproach when it comes to feelings of fear and anxiety and we all know that's where the enemy wants us, but we also know that prayer and truth are the best and most powerful tool that we have!

Last weekend we took a mini vacation to La Toretta on Lake Conroe (only about an hour and a half away).  Grace stayed with us the first night and then went to my in-laws the second day and night so that we could spend some quality time with Abigail and Andrew.  We had a great time!  Some of the highlights include, going on this giant slide about a thousand times, the lazy river, and golfing (it was the kids first time doing real golf).

We have had two family outings to the movies with Grace so far and she is a great movie goer so far...

On a not so good note...  we came home to a house that was 85 degrees :-/.  Long story short, our air conditioner needed to be replaced.  Since it was 12 years old and out dated, we had to replace the inside AND outside unit...  OUCH!!!  Boy, that hurts when you are gearing up for an expensive vacation (trip) to Boston Children's Hospital for 2-3 months and something that big and expensive goes out.  I'm trying to remind myself that our money is really God's money, so if He wants to spend His money on a new air conditioner then He can do that :-).

Just for fun, here are a couple sweet and silly pictures of our sweet Gracie Doo...

We love and appreciate each of you!

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