Thursday, January 22, 2009

On a side note - BMW Charity Pro-Am

Palmetto Hearts has been chosen as a charitable beneficiary for the 2009 BMW Charity Pro-Am (www.youcantmissit.com). This is a tremendous opportunity for us to raise money for our organization and to directly benefit our families. The money we raise will be used for the following:

• Fund our Family Voucher Program which will provide assistance with meals, travel, and hotel costs when a family in hospitalized for a CHD related surgery or procedure.
• Provide money for outings throughout the state such as the ones you’ve seen photos of on our website.
• Provide money to promote awareness for Congenital Heart Defects
• Help with printed material (brochures) and operating costs (website, telephone, etc)

We need your help! Information regarding tickets, volunteers, corporate packages, and player packages can be found on our website www.palmettohearts.org, along with a list of what Palmetto Hearts receives back from the sale, under the BMW Charity Pro-Am link on the home page. Celebrities like Kevin Costner, Cheech Marin, Joe Pesci, and Dennis Quaid have participated and are likely to show up again this year!

Please use this email and the attachment as a way to spread the word! It will take all of us working together to make this a success!

Thank you!

Heart hugs,

Sara

Monday, January 12, 2009

A little bit of everything

Getting back on track from Christmas vacation has been more of a feat than ever before. Just something about this Christmas and New Year, I wanted to get through it. I"m not saying I didn't enjoy it, just not as much as in years past. Last week getting in the routine of bedtime (which we basically let go) and getting up at 6:30 (UGH!) was rough on all of us. I believe we have gotten it all back together though!

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Friday was the BMW Charity Pro-Am orientation. We got all of our information from them, then it was off to an Executive Board meeting for Palmetto Hearts. Saturday morning Kaeleigh and Avery had cheerleading and basketball, respectively. Saturday night has become our family movie night. We watched Space Chimps, it was pretty good. The kids enjoyed it for sure! Kaden doesn't have the attention span just yet for it. Sunday we headed over to Monkey Joe's to get together with some of our friends and other heart families, and to raise a little money for Palmetto Hearts. The kids wore themselves out sliding and jumping and running around! Tim and I were exhausted as well. Everyone slept well last night, except for me.

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Kaden had his 6 month cardiologist check up this morning. I haven't slept well in a couple of nights. That's typical though. In the back of my mind, I still have the worry like I did when our heart journey with Kaden began. Kaden was wonderful at the PC (Pediatric Cardiologist) today. He allowed them to take his blood pressure, listen to his heart, and do a full echo. He laid still for around 30 minutes, and our tech was able to get pictures of everything they needed. Heart function is great, and the leakage around his aorta is down-graded from mild to minimal! However, the pulmonary stenosis (narrowing of the arteries that carry oxygenated blood to the lungs) is still at a point where he needs to have a more in depth study done. We are waiting on a call back from Nuclear Medicine (it sounds worse than it is) and we will take Kaden to be sedated and have a dye injected to "light up" his pulmonary arteries on a scan. This lung perfusion test will allow the doctor to see if there is there is blood flow distributed equally between his lungs. If there is any indication of a problem, we'll go back to see Dr. Malpass (his PC) and determine if any intervention is necessary. If so, we'll be headed back to Charleston for a heart cath and a balloon to be inserted to help with the blockage. As with everything, we know that God is in control. Kaden has FAR EXCEEDED any and all expectations from everyone involved with his medical care! We will continue to rely on God's blessing of health and healing for our little guy!

He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust." Psalm 91:1-2

Saturday, January 10, 2009

Week 24(ish)

Busy with my family. That's my reasoning behind missing the past two weeks. Well, partly. I couldn't bear to ring in the New Year knowing that this was the year we were going to have a new baby. I went to bed at 11:45pm on December 31, 2008 just so I didn't have to cry in 2009. I'm moving, slowly but surely, back to "normal" life.

This Monday, Kaden will go for his 6 month heart check. I'm unable to sleep for nearly a week prior to these visits. The what-if's keep me from feeling at ease. But God always pulls through for me. I just visited my friend Rebecca's blog and am never amazed that God speaks to me through her. I am also walking by faith. Knowing my Father holds the keys to life and death and He has allowed me to experience both through my children. Kaeleigh, Avery, and Kaden's health makes losing the baby so much harder, but losing the baby makes their lives so much more precious. I know God will continue to sustain us on this journey with Kaden's heart, that He will provide for us.

Tomorrow I'm going to try to add a slide show to my blog, so stay tuned! Random pictures from the kids sports and other activites.

But just as he who called you is holy, so be holy in all you do; 16for it is written: "Be holy, because I am holy." 1 Peter 1:15-16