Wednesday, August 11, 2010

Our hearts, prayers, and love go out to the Sabin family this week for the lose of their sweet baby girl Annie Sabin. Annie was 4 1/2 months old and was born with tetrology of fallot. For the duration of her life she fought against all odds and various other complications to brighten the lives of those who were lucky enough to know her.

One of the blessings of being a mother of a child who has special needs is that you are able to associate with incredible parents of other children with special needs. This is especially true in the heart world. I have met mothers in the cardiology clinic, in the pharmacy, in the outpatient blood lab, and in the hospital halls. Let's face it, Primary Children's Hospital is a second home to many of us. I was blessed to meet Amy Sabin after Matthew's transplant while Annie and Matthew were in the cardiac ICU together. I went to Annie's viewing on Monday to try to express my love and support to Amy, Cameron, and their family (Annie was the sixth child) but found myself being strengthened by them. What an amazing family with incredible faith and strength. This exprience was another testimony to me that during difficult times the Lord truly is aware of us and can carry us, if we allow him, when things get difficult. I would hope that if I was placed in a similar situation, that I would demonstrate as much faith and trust in the Lord as Amy and Cameron have these past few weeks. Thank you for your good example- truly you are amazing!!

Matthew had an appointment yesterday. We are in a holding pattern until his next biopsy which will probably take place the first week of September. Right now he is doing fabulous except he has an attitude that can only be described accurately by Emily (one of the transplant coordinators) as "roid rage". My sweet, mild tempered baby now hits, screams, and yells "no!!" routinely. I have to smile because I know that this behavior stems from the high dose steriods he is currently on and is not a reflection of his new personality-- hopefully! So far, his rejection has been attributed to the steriod wean schedule he was previously on. For most kids, the schedule works just fine. But, for others like Matthew, they need to be weaned more slowly and some kids actually need to stay on steroids forever. Only time will tell what Matthew can tolerate and if there was damage done to the heart as a result of this rejection episode. We are hopeful that once the rejection is under control, all the pressures will normalize. Until then, we are enjoying each daily victory!


  1. I'm so sorry to hear about Annie. I can't even imagine losing a heart baby...and it hit home that Annie had Tetrology of Fallot (like Erica). What a blessing each day is with these sweet babies! Continue on with those great daily victories!

  2. "Enjoying each daily victory!" That is going to be my new mantra!I love it. You are brilliant. You are in our prayers on going!

  3. I thought of you this morning (like every other morning), but knew I needed to write b/c I read an article about Italian (!!!) research that claims patients w/ faith survive transplant better & longer than those without a belief in God. It's still a struggle, especially when Matthew deviates from the schedule, but here he still is! I would love to witness the roid rage...for two seconds. Joking aside, my condolences & prayers to little Annie's family. And ongoing prayers & best wishes for you guys, & may Matthew continue to weave his tapestry of miracles.

  4. Great post. Whether you know it or not, you are an incredible example of faith as well. Your blog posts are always so uplifting, regardless of the craziness that's going on.

    I'm so sorry to hear about Annie... Her family will be in our prayers, along with Matthew. We hope he does better, and that the next biposy goes well. Good luck with the "roid rage!"

  5. My heart goes out to Annie's family. Your post was wonderful. I have been wondering if Matthew has had another biopsy since I talked to you briefly at church. Hopefully everything goes well in the upcoming week. I keep him in prayers!