March of Dimes Walk, Appointments, Prayer Requests and Praise

Hi all! Thank you to all who sponsored us for the March of Dimes walk. Due to your generous giving we were able to raise over $1,200! Sunday was Alexandria's big day out - the first day she was out in a crowded place other then a hospital or a doctor's office. Steve, my mom, my sister-in-law and my niece walked to honor Alex. The money you gave will help to one day prevent premature births and genetic disorders in babies. Thank you. Check out 2009 March of Dimes Fundraiser Walk slideshow to the left and thank my mom and dad for it - my mom took all the pictures and my dad emailed them to me. :) Alex did sooooo well at the walk! I can't even begin to tell you how well she did. We are all so proud of her! Sunday was a very long, hot and exhausting day for all of us and Alex hang in there just as well as the rest of us. I think we are all catching up on our zzzz's still... :)

Alex had her O.T. appointment today (every Tuesday at 10:00 a.m.) and tomorrow she will be getting evaluated by a P.T. Once the O.T. and the P.T. talk we will know how to break up these O.T./P.T. appointments. I am still waiting to hear from CHOP about scheduling an appointment with a feeding team there - it takes 2 weeks from the time you fill out an intake over the phone to hear back about scheduling an appointment with the feeding team. We do have an appointment with a nutritionist at CHOP in a week or two and depending on how that goes we may not even need to schedule an appointment with the feeding team. We will see. I feel like I am constantly on the phone with our insurance company or a doctor's office or the hospital...

Please continue to pray for Alexandria's weight gain as well as for her left kidney and for the kidney stones in both kidneys. Thank you so much!

And by the way, I met a mom at the CHOP in Voorhees today who had twins, a boy and a girl, 6 weeks early. The twins are 1 year old now. The little girl is fine but the little boy just had a liver transplant...The mom donated a part of her liver to him because they could not find a donor and her son's health was getting worst. The little boy is doing much better now. The mom is taking longer to recover but is recovering as well. I was touched by this story and thought I would share it. A Mother's love runs very deep...A FATHER'S love runs even deeper - "Amazing love...How can it be that you my God would die for me..."

Have a blessed night.

Kamila