Life is getting in the way of blogging.

Two months later...

We are no longer fighting neutropenia. Ruthie has gotten her medicine and WBC under control. She is back to her normal self according to her numbers and her appearance. We still do not know why she was suffering from neutropenia, but we DO have it all back to normal. We are very grateful for this victory, even though we do not know how we won.

As for the rest of us, Charlie is moving and shaking EVERYWHERE. We celebrated her 1st Birthday on May 25th, even though she was born May 17th. She had a blast opening presents and eating her cupcake. It was wonderful to watch her and Ruthie interact with all their cousins.
Kids being kids makes this Momma's heart smile :) (Pictures to come later)

Josh and I have been very busy this summer. Josh spent a week in Chicago for work. It was interesting being a "single" Mom for a week. I have much more respect for those who do it alone all day, every day. I was completely exhausted without him here.
After his trip, Josh took about a week off work to have some time with the family. During this week,

-We had a cardiology clinic visit... Ruthie's heart looks wonderful, her attitude was not as wonderful during the different aspects of clinic. IE X-Ray, blood draw, Echo, EKG, etc. But she is healthy.

- I started a new job while still working at Bandana's. Now I am juggling two work schedules.

- I became a part of the Family Advisory Council at SLCH. Although I have only attended one meeting, I am looking forward to helping families like mine and giving other parents hope and understanding.

- We did MAJOR house work and organizing.

- We enjoyed celebrating the 4th of July with our families. I don't know the last time we spent a holiday with both families and did not have a sick kiddo. It was AWESOME!

- We celebrated July 5- Ruth's heart birthday.
My FB post on her heart birthday... I was unable to log onto blogger that day.

We are so truly blessed to say for the third year...
Thank you sweet donor family and donor angel. Thank you for giving us the gift of love, the gift of hope, the gift of life. We continue to ask God daily to provide your family with strength and peace. Although we do not know you or your family, your family's act of compassion has FOREVER changed our lives.
Happy 3rd Heart Birthday Ruthie! Ruthie, you continue to amaze me by your strength and your excitement for life.
Thank you to EVERYONE who has been on this journey with us. Thank you for cheering us on, listening to us vent, cry, laugh. Thank you for giving us advice and reminders to stay calm and let God work. Thank you for learning and understanding terms like HLHS, 02 saturation, g-tube, HR, cath, rejection, rounds, immune suppressants... the list goes on and on. But most of all, thank you all for praying. We completely understand that without these prayers, we would not be strong enough to stand today. So from the bottom of our very, very grateful heart, THANK YOU for helping us get to and through today.
We love you!.

All and all this summer has been fun, busy and most importantly healthy. Ruthie and I are both looking forward to school starting. Ruthie starts August 14th and I start August 19th. It's almost time for my favorite shopping trip... SCHOOL SUPPLY SHOPPING!

Just a reminder....
This year’s Congenital Heart Walk will take place on August 25, 2013 at Creve Coeur Lake Memorial Park. Please join the Pinkalicious Warriors as we walk all over CHDs.
For more information, visit ....
http://missouri.childrensheartfoundation.org/events/congenital-heart-walk/

Thank you all for your continuous support and prayers. We are blessed by you each and every day.

Thank you Pinkalicious Warriors.!

Heart hugs!!

Laura 

Results are in...

I spoke with the Transplant Team today.  Ruth's tacro was 6! PERFECT! We like keeping her tacro (pro-graf) level between 5 and 10. However, the numbers we were truly concerned about are LOWER!  Her WBC was 2.9 and her ANC is 232! Her ANC was 370 last time and now it's 232?!? WHAT IS GOING ON?? She is healthy. She has no fever or sign of infection. She is eating like crazy and doing BIG girl things.
Since Ruthis healthy and happy, Dr. Canter doesn't want to rock the boat or give medicine to someone who does not need it. So, the plan....
We will recheck her labs next Friday, May 10th to see if her lowered tacro level helps Ruthie raise her ANC. Cardiology also reached out to Hematology/Oncology to see if they suggest anything new or different. 
Ruthie has visited many a times with Hem/Onc when dealing with neutropenia and neutropenic fevers. They know her a little too well. So unless, the Hem/Onc team has any further ideas, we are staying our course. We are keeping her away from sick people or people who have recently been sick. We are taking EXTRA special precautions in hand washing and surface cleaning. I think I should buy stock in Lysol Disinfecting wipes/ sprays. I also should buy stock in hand sanitizer. LOL, but seriously.

Sorry it took me so long to update. We were not only waiting on results, but a plan. It is much easier to share when the whole picture is together. 

Once again, thank you for your prayers. We are extremely blessed to have such faithful and prayerful people in our lives. 

REMINDER:
AHA Heart Walk is THIS Saturday, May 4, 2013.

We will be meeting as a Pinkalicious Warriors Team at 8:00- 8:15 AM inside Busch Stadium near section 139. 

Please consider joining us as we walk all over CHD!

Prayers and Hugs!