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Sunday, February 27, 2011

A Birthday Party, a Tennis Match and a Heartfelt Prayer...

This was a very good weekend. Sophie felt good, all things considered, for her party on Saturday. She was running a low grade temp on Saturday morning, but since the doctors don't seem too worried about it, I just gave her Motrin and she pushed through. She complained about a headache, but was very excited about the party. On Friday night, my friend Nicole brought over the most adorable cupcakes. What an awesome surprise for Sophie. They were spectacular tasting and really cute... see....

They were strawberry with cream cheese icing... Nom Nom Nom! So, the cousins arrived and the goodie bags were made, and people started to call for more specific directions. We had such a blast and my friend Melissa with Snapped with Love Photography ( came and took some pictures of the event for us. She is a full time on-location photographer now and has amazing talent... just check out her site and her blog is good too!

Well, back to the party... Aside from the temp, we pushed onward and she spent about an hour and a half outside playing and eating cake and running around. It delighted me to no end to see her actually playing. Her adrenaline was really pumping and the Motrin had kicked in, so I'll take what I can get!

There were two little girls that slept over, (Sophie's first sleepover) and another that stayed 'til 9pm. Though Sophie had a little breakdown at about 8pm and wanted to call it off, she rested and collected herself and I gave her a little encouragement and reminded her to take it easy and she was fine. They stayed up until they turned on "Oliver and Company", possibly the most BORING Disney movie of all time. They snuggled up in their sleeping bags and and once the movie was over, there were no arguments, they all fell asleep.

I was so surprised that everyone slept so well all nestled in on the living room floor. But, after the day they had all had running around like crazy wild children, I completely understood. Aiden went over to my mom's to spend the night and the girls relished in being able to giggle through the movie. And, I enjoyed being able to fall asleep on the couch as I attempted to stay awake through the movie.

By eleven, after the final pass through the house, I was lying awake thinking about how blessed the day was. How generous people were to come and bring gifts for Sophie and how amazing the weather was. How, even though she had a temp and a headache, Sophie pushed through the day and had a great time. We all had a blast. Aiden was beside himself and completely over stimulated but had an amazing time showing off and running around the block a few times. He doesn't get out much...

The other news this weekend is that Sophie's doctor from Texas Children's sent me an email response and told me that for the headaches/malaise and the fevers that Sophie's been having, we should see the pediatrician. Well we already did and she told us to call THEM... I'm so frustrated and all I want is for her to have a week, a full week of good days... I emailed him back and said that we did see the pediatrician and that the pediatrician had told us to go see THEM again. Obviously he's not all that concerned with the test results or he would insist that she come back in sooner than what is already scheduled, but I'm worried about an every day headache and an every day fever. It just isn't right, and I feel like I'm playing a tennis match and that my daughter's the ball. It's just not right. I plan to get to the bottom of this tomorrow. It's just getting old. God's got this covered, but I am her advocate and I will push on to get to the bottom of this.

And, in other news, we're back on the roller coaster with Aiden. He's got a temp today and runny nose/congestion. I hate it when he gets sick because his immune system gets weak and then there is the threat of seizures. He hasn't had a seizure in months, but he's been so healthy, we'll see. I just want him to get stronger and stronger like he has every day. I pray for that every day of my life.

Tonight I am reminded just how blessed we are, and how the focus of everything in my life has changed over the last three years. My focus has become completely my Lord and my family. No doubt. I like my job and the people I work with are amazing, but the focus of every breath I take now is my God and my family. I have completely and totally surrendured my life to Him and though I know that the last three years have been pretty tough, there have been some amazing parts too... and will continue to be, with God's grace, His strength and the healing power, that can only come from Him. As pastor Jim preached this morning, he talked of how Mary fell at Jesus' feet several times in scripture. Tonight I am falling at his feet worshipping with a thankful heart and an enduring faithfulness that will see us through another day.

And, as I pray tonight, I am really looking forward to tomorrow. I am deep in contemplative mode about all the warriors that have and are being affected by rare diseases tonight. My friend Tammy put this list on her Facebook page and I wanted to share it with you tonight. I realize it's just the tip of the iceberg, but it really puts it in perspective. Please pray for these people and their families tonight. If they have brackets next to their ^^name^^, then they are angels now. If they don't, they are survivors/warriors braving the roller coaster every day. The color next to their names is the balloon color that will be lifted for them tomorrow in honor of rare disease day. I am praying desperately that this event brings some much needed funding and attention to the cause. We can't lose more children or adults to these dreaded and horrific diseases. Thank you Tammy!


^^LIAM^^ white like the angel he is. HLH

^^CAMERON^^ Blue HLH Sweet baby boy

^^ELLE^^ Pink LCH

^^AAMARI^^ Green and Pink LCH

^^ Jake^^ blue HLH

^^SYDNEY^^ pink HLH

^^Samuel^^ orange LCH

^^DeCota^^ Yellow LCH

^^Tanner^^ blue JXG

^^Justin^^ blue HLH

^^ Devan^^ red

^^ LOGAN ^^ Blue

^^ZAC^^ green

^^ BEN^^ green JXG

^^ ABIGAL^^ Pink

^^Brady^^ Yellow for Sponge Bob! ^^

^^Karleigh^^ red HLH

^^Justice John^^ and ^^Jon Carlos^^ HLH angels and brothers

^^Andrew and Matthew Aiken^^ HLH angels and brothers

^^Cade^^ blue FHL




^^ARI^^ Pink LCH

^^Little Joe^^ Lime green LCH

^^Stuart^^ orange LCH and HLH

^^Madilyn^^ pink LCH

Other Rare Disease Angels (Children)

^^Garrett^^ orange Acute Lymphoblastic Leukemia with Lymphoma

^^Trinity^^ Blue Acute Lumphonic Leukemia and died from blood infection

^^Haleybug^^ pink Acute Lymphoblastic Leukemia

^^SUSANA^^ our newest angel 2-11-11 Pink Neuroblastama


I have listed the children's names, the the color of balloon they wanted, then what thier disease is.

Deakon Orange HLH Survivor and free of disease for 5 yrs

Sweet Sophie Pink HLH and BMT

Hailey Pink HLH Miracle Girl

Caleb yellow FHLH post transplant

Freya Rose pink HLH Miracle Girl

Blair blue HLH Remission for 2 yrs

Stephanie pink HLH Survivor from UK teenager

Racheal pink EBV and HLH in remission for 7 mos.

Caleb red HLH with BMT and just relapased HLH again

Dayne green HLH Remission

Ethan HLH Survivor

Kristen HLH Survivor

Samantha HLH with complicated BMT

Tuesday HLH and BMT

Liamh FHLH and BMT

Calum FLHL and BMT

Benjamin Yellow LCH

Bri'anna Purple LCH Remission

Brooke pink LCH

Justice pink LCH

Abby pink LCH

Kadence Purple LCH

Kylee Orange LCH and DI Remission

Nataly Pink LCH

Zoe Purple LCH

Erin Green LCH Remission

Zachary Baseball Field Green LCH Remission

Kenny Light Blue LCH Remission

Ava Green LCH

Joey Blue LCH and Bone Marrow Transplant

Olivia Purple LCH Remission

Ian blue LCH Remission

Jace Blue LCH

Tyler Blue LCH

Zoe Purple LCH

Bubby David Red LCH

Elizabeth Pink LCH

Lucas Blue LCH

Devi light blue LCH

Ryan White LCH Remission

Alex Green LCH

Lauren Blue and Green LCH


Ethan Red LCH

Alex blue and green LCH

Evan Green LCH

Ella purple LCH

Justice Pink LCH

Elias LCH

Brandon Red and Blue

Elliott Green LCH

Brady Yellow LCH

Jacob LCH

Elmer blue LCH and Mastocytosis

Kyle green LCH

Preston LCH Purple

Sawyer orange LCH with DI

Taylor Blue LCH with CNS

Lily pink LCH

Layla pink LCH

Nolan green LCH

Ryan blue LCH Remission

Griffin red and blue LCH Remission

Brittany yellow LCH

Callie lime green

Raelee purple purple purple :) LCH

Carina yellow LCH

Carson blue LCH

Kenneth blue LCH

Isaac blue LCH

Chase green LCH remission

Bryson blue LCH

Stuart green Possible ND CNS

Joseph red LCH

Quentin LCH

Davyn Green JXG Miracle Champ

Santiago Red and JXG Champ

Sean blue JXG Champ

Jayden red JXG Champ

Declan Blue Ocular JXG Champ

Abby Pink JXG Champ

Morgan purple JXG Champ

Braeden blue JXG Champ

Symphonie pink or red JXG Champ

Justin Blue JXG Champ

Jamie blue JXG Champ

Emma purple JXG Champ

Beth pink JXG Champ

Joseph green Rare Blood Disorder




Chris green Adult LCH

Nancy blue Adult LCH

Heidi K Adult PLCH

Elizabeth blue LCH with CNS and Di

Elizabeth Adult LCh

Jonny A LCH

Stephen K LCH

Sparky purple Ehler Danlos, LQTS, and Dysautonomia Adult

Chad Red Cystinsois Adult

Noah Red HME ( Half of Brain removed to stop seizures) He is our Miracle Boy Child

Trent yellow Seizure Disorder/Cancer Survivor Child

Katelyn pink Wilm's Tumor in remission Child

Brittany blue ALL-Leukemia- Child

Lara red RSD

^^Debbie^^ Pink Cystinosis

Dear God,
Please say goodnight to the precious angels for us, children and adults, that were taken from us too soon. And, to all the friends we don't know yet, that are fighting these disorders, please help them find peace in knowing that people they don't even know are crying out for your supernatural healing and peace for them tonight.

Goodnight friends, J

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