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!

Change of course

Hello!
Quick update on Ruthie's plan.
After further discussing her neutropenia with the ID (infectious disease) team, our Transplant team has decided to hold off on the GCSF (neupogen) injections. Ruthie is not acting sick or running fevers. Since she is not "fighting an infection" but merely neutropenic, we will play the wait and see game.
Our new plan:
We are going to lower her Tacro (Pro-graf) dose (an immune suppressant drug).We are hoping that by tweaking her medicine, she will bring her ANC (absolute neutraphil count) back up into a normal range. Our goal is 1500. We adjusted her dosage last night with the evening medicines. We are repeating a CBC and Tacro level on Monday. After Monday, we will know more information.
BUT, if Ruth runs a fever (anything over 100.5) or starts acting sick, we will bump up her blood draw up to emergent! There is a good possibility that if Ruth is feverish for any extended time, we will be admitted to SLCH to run cultures, start antibiotics and monitor her WBC.

Thank you for keeping Ruthie in your prayers. She has been so happy during this bout of neutropenia, which is highly uncommon. Neutropenia usually causes tiredness, loss of appetite, fatigue, body aches, and just over all crumminess. And the last time she was neutropenic we experienced all of those symptoms. I am still a bit bewildered by the whole thing. In our history with Ruth, the numbers confirmed her clinical appearance. However, she is once again being a medical marvel- defying the odds. She appears healthy and happy. Her blood work, though, states she is sick and in real danger of infection. What a mystery!

As for myself, I am preparing for SLCH. I have individual bags packed for Ruthie, Charlie and for myself. I am on the "just in case" mode. If I prepare and plan on spending time at SLCH, then it won't happen. Or at least, if it does, I am ready.

Thank you Pinkalicious Warriors for your support of not only Ruthie but our other friends. Please pray for Lauren and Carol. Pray for their wonderful families to receive peace of mind. Please also add to your list:
Bob (family friend suffering from leukemia)
Linda (my friend's aunt who was diagnosed with cancer)
Rich (my parent's friend who was diagnosed with cancer)

Thank you so much!

Heart hugs!!

We need your help!

ATTN: Pinkalicious Prayer Warriors, I have a few requests.

1. Please pray for Lauren Murphy and her amazing family. Lauren was struck by a car in LA late last week and has been in a coma since her admittance to the hospital. She has already undergone surgery on her brain. She is fighter! Please pray for her, her family, her doctors, nurses and everyone that is involved in her care.

For current updates or for information on how to help, please visit Lauren's caringbridge site.
http://www.caringbridge.org/visit/laurenmurphy.

2. Our long time friend, Carol is bravely fighting her battle of leukemia. She just recently started experiences seizures in response to her harsh chemo.She is fighting to have the chance to receive a bone marrow transplant. She is currently living in our second home, SLCH. Lindsey, Carol's mother, is one of the most amazing people I know.  Carol was diagnosed the same year Ruth was born... 2009. Due to a diagnosis in Feb. 2009, Lindsey was able to give me more guidance and advice about SLCH than any other person I knew at the time. From simple things like, "SLCH has DQ and they are open until 2am" to explaining WBCs and different medically terms and medicines in general. The Ingolia Family, despite the trials of their own, made SLCH a home for us from the beginning. So please pray for Carol as she continues to fight. Pray for her and her family's strength and courage. 

For current updates or for information on how to help, please visit Carol's FB page.

https://www.facebook.com/pages/Carols-Crusaders/557566837607609?fref=ts


3. Ruthie has been battling neutropenia for the past few weeks. She has been acting healthy, eating like crazy and actually using the potty! HOWEVER, her WBC is claiming that she is sick:(
With a low ANC (neutropenia), Ruthie is very open to infections that her little body cannot fight off since she does not have many "fighter cells"--aka WBC. Please say a few prayers for Ruthie and of course our transplant team. They are all scratching their brains and trying to determine the cause for these low counts. We will be starting GCSF shots today. GCSF (neupogen) encourages the body to make white blood cells. Ruthie will have one shot today, tomorrow and Thursday. Friday, we will check her WBC with a blood draw. Just to give a little perspective, Ruth's ANC was 370 yesterday. Anything under 500 is considered severely low. Our goal for her is 1500. We hope to reach our goal by next week. I can see a blood draw being scheduled for Monday, but we shall see.

Please keep our friends and Ruthie in your prayers. As I become a SLCH veteran and just a little wiser (notice I did not say older), I have to come to know one absolute, prayer.
When in doubt PRAY!
Pray for peace of mind. Pray for strength. Pray for understanding. Pray for the doctors, nurses, therapists, all the staff. Pray for compassion. Pray for healing. Just PRAY!
PRAYER is the only absolute healing. Even though prayer may not stop the physical pain, kill the cancer, or give you a new heart, it WILL give you a sense of calm. Prayer WILL help you understand that you cannot control your circumstances, but you CAN let go and let God take control of those circumstances. Who else deserves to have this type of control over my life, but God?!

Thank you all for the continued support.

Ruthie, Alex (Ruth's cousin), and myself after Ruth's 1st Pre-School Performance last Thursday!
(She doesn't look sick to me! She looks happy!!)

Times Flies When You're Having Fun!

WOW! At the risk of sounding like a cliche, "It has been way too long since I have blogged." Apparently, life marches on whether you blog about it on not.

For those who do not follow me on FB, I have a LOT of catching up to do.
 
 So, let's start from the beginning.

Since September 2011,

From November 2011 until January 2012, Ruth was in and out of SLCH.  She suffered from double pneumonia and neutropenia (extremely low white blood cell counts). While searching for an answer to her neutropenia, Ruth was diagnosed with Turner's Syndrome. This new discovery has lead to another set of doctors and specialists on Ruth's ever-growing list.

Although the holiday season of 2011 was spent primarily in SLCH, Ruthie still had a lil fun dressing up on Thanksgiving.
 

After leaving the hospital (for good!) in January and becoming pros at home health care visits, home IV use, and a port,  Ruthie learned to walk on her own. WHAT A HUGE ACCOMPLISHMENT. (Click the highlighted text for video of her first steps).

After what seemed like a lifetime of constant blood draws, temp checks and needle changes, Ruth's white blood count was considered stable enough to remove her port in early May 2012.  
Just in time for this Heart Momma to focus on a growing belly and a growing family.... 
                                              
 

  

                       

 Charlotte Joan was born happy and HEALTHY (and Yes! We did ask for a pulse ox in the OR.)


 After welcoming Cha- Cha (Ruth's first attempts at Charlie or Charlotte), we spent most of the summer just getting to know each other. In no time, Ruthie became my little helper and such a loving big sister.

 

Then the real fun began!

We visited Grant's Farm.

 

We had swimming lessons with Paw Paw

                                        
                       Ruth stayed cool with her shades and a water bucket through our crazy heat wave.

                   As the summer came to an end, a new beginning was ready to challenge us all...

                                                                 PRE- SCHOOL!! 
Ruthie is now attending school 4 mornings a week. She is receiving OT, PT, ST as part of her normal school day.She is also a big bus rider. She rides from home to school and back again each day. Let me tell you that is was not an easy transition for any of us. It took a while, but now that Ruth understands her routine, it is smooth sailing.

With Ruthie expanding her horizons and becoming more independent, Charlie and I have been getting more one on one time. We are able to play and connect each day. It is wonderful to spend time with each one of my girls.

 

The best thing is watching them share their love. It just melts my heart.

                                                           
 As for Joshua and myself, we are still holding onto this wild ride we call life. We are tackling each problem, each adventure, each poopy diaper or projectile vomit- head on. We are making it happen and rolling with the punches.
I am currently staying home with the girls during the day while my partner in crime works hard for the money. Come afternoon time, we switch duties. Josh walks into the "chaos", we call home, and I walk out into the land of the living.


We may not have it all figured out yet, but we are making leaps and bounds to where we want to be.

Keeping our heads up, our hands folded and our hearts lifted in prayer.

Until next time....