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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Saturday, September 29, 2007

Praying for miracles

My friend Jenn Pearson says.."I don't know what our little boy's miracles will be, but I will accept them, even if it means a miracle for someone else" Today my little miracle is playing in his excersaucer (generously loaned to us by my brother and his wife). He is with me today, taking the medicines that I hope save his heart and make him strong. He doesn't like to take them... But I told him it will make him feel better. We started all the meds now and after going down to two meds a day, back to six, I just keep thinking this will be part of our life... The Digoxin isn't too bad. We did have to go back on lasix. He is eating well and sleeping a lot. They said all of that is congruent to his heart failure. He sweats a ton, whimpers and needs me to hold him more, but he smiles still and makes me feel like he still loves our family with his whole-little-broken-heart.... The Dr's said that they will call and set up an appointment for an echo in about three weeks, so we will start our waiting game. Ry is in Florida, having a blast. We miss her and can't wait to see the pictures...

5 comments:

Terry said...

Thank you for the phone call the other day. Alex is always in our prayers. As are you and Jeff. Remember I am here for you!! We love you guys! I love the pictures his a great little model.

Melissa said...

I love the cute pictures! Enjoy your one on one time with Alex. Every moment is so precious!

Anonymous said...

My sister is so smart!!! I pray for all the little heart babies, they I think have the strongest hearts of us all (in a crazy sense). Ian and I am sure Alex have been able to have fun times and have smiled alot. They have the best attitudes and love for all. At least that is what I think. That is what gives them the best hearts ever. Your boy is so cute. I am glad you have been there for Jenn!! I wish I could be there for her more!! Alex and Ian are always in my prayers!
Thanks,
Amy Aplington
Jenn Pearson's sister

sstar said...

Lucky little doll to go to florida! I want to see those pics too! :)
Love you guys!

Marti said...

Hey guys...We pray for Haley prays for Alex every night and so do we. I talked to my girlfriend who knows Alex and it is her husband's sister, Allison Curtis. We love you guys and think about you constantly!