Today's Gift

Yesterday I got home to find that our downstairs AC unit was broken, again! Of course this is how things often are in the Gibson household-unpredictable. Our lovely daycare director (Brenda) referred me to her AC man- Mr. Crow. For any of you who ever need AC work this is your man. He was the kindest, sweetest, most genuine, caring individual. He is an older man so to me he kinda reminded me of my Papa. Mr. Crow and I spent about 45 minutes together this afternoon. He looked at our AC, fixed our AC and then we chatted about everything! We talked about education, daycare, special needs, the upcoming election in relation to medical viewpoints, illnesses, doctors, surgeries, hospitals and family. When it was all said and done he only charged me $67.50 for service call, labor and parts!!!! Unbelievable!!!!

I would like to think that Mr. Crow walked away from my home today feeling the way I did- like I had just met an unbelievable, sincere and genuine individual!!!!

P.S. Justin wants me to call him and see if he fixes toilets too. Apparently that is not on my dear husband's to-do-list anymore. I wonder what Mr. Crow and I will talk about if he comes out to fix the toilets?! :)

Miracles & Mistakes

Since Kennedy's birth many things have become much clearer for me. I have come to the very clear realization that you cannot change people. I use to spend so much time and worry over worn and frayed relationships. Now I rejoice in the memories and impressions those relationships have had on my life. I also spent much time after Kennedy's birth questioning God's purpose for her ailment. Now I am strong in my belief that he does not make mistakes rather he makes miracles. Kennedy has been a rock for me. She has endured so much yet continues to smile.
I have spent a lot of time lately reading the following blogs:
http://sgirl79.blogspot.com/
http://audreycaroline.blogspot.com/
http://www.tstapes.blogspot.com/
http://cfhusband.blogspot.com/

These are several of God's little miracles. I promise that after reading these blogs you will take a step back and examine your focus and find peace in the miracles the good Lord has blessed you with.

Girls Just Wanna Have Fun....

Here are some pictures of my girls having fun on the weekends....

Last weekend Brooklyn & Mommy explored their artistic sides with sidewalk paint and chalk.

Our lil' Bunny playing in her saucer

We took Brooklyn to the FFA Barn to see some brand new baby pigs- Can you believe she held one???

Ken-Ken swinging at the park

Our Chunk of Love on the slide

Big Sister rockin it out on the motorcycle America's Next Top Model...

I just can't get enough Brooklyn & Kennedy. What little miracles from God!!!

Terrible Tonsillectomy

I couldn't resist taking pictures of Brooklyn's Tonsillectomy. From the pictures you can see that Justin, Kennedy and I were enjoying our visit to the hospital quite a bit more than Bookie was.

By the way- she was a HORRIFIC patient!!!!

Summertime FUN at SeaWorld

Below are pictures from our SeaWorld trip that we took this summer. Our friends, Katie and Austin, kept Kennedy so that we could focus on Brooklyn. She had a blast which I think you will be able to see in these pictures!!!

Brooklyn & Daddy wearing their 3D glasses

Cuddling before dinner- couldn't forget our Shamu
Brooklyn wading at the hotel pool
Yes, we are about to ride the SHAMU EXPRESS

Anxiously awaiting the BIG SHOW- Shamu of course
Feeding the Dolphins


"Seriously Mom, stop taking pictures!"
Enjoying a push up posicle in the hotel

Nothings Changed. Everythings Changed.

The last 72 hours have been a whirl wind for Justin and I.

Tuesday morning I got a phone call from Kennedy’s Geneticist in Dallas. The lab in Colorado had found that Kennedy did not have Albinism types 1 or 2 and they were willing to continue testing for types 3 and 4. I was ecstatic, tears of joy were flowing!!!

By early afternoon I was crying tears of fear. After speaking with the Univ. of Colorado’s DNA lab reality was put into a new perspective. The doctor at the Univ. informed me that Albinism type 3 has only been diagnosed in African Americans and that Albinism type 4 had only been diagnosed in about 30 people in the USA!!! I sat on the phone wondering why she felt the need to fill me in on statistics- just do the test!!! Then she asked, “Are you sure Mrs. Gibson that you do not have Puerto Rican decent.” I quickly responded with, “Why!?” She continued to explain that there was a disorder called Hermansky Pudlack Syndrome (http://www.albinism.org/publications/HPS.html) that could be confused with Albinism types 1-4. Persons with HPS look like a “typical Albino” however; they can have fatal medical problems. Some of the issues involved are: bleeding problems, lung disease (which is fatal), bruising and bowel disease. With tears running down my face we hung up. I jumped on the internet (not always a good idea) and began to research this Monster called HPS!!! As I searched I contacted everyone and anyone who had a connection to this disorder. I contacted a lady who at the time I had no idea would be my rock and strength- she was in NY and I here in Frisco, Texas. That night at 10pm my cell phone rang. It was Donna in NY. Donna is the president for the HPS Network. Through my sobbing she talked me through what this disorder was. Like a little child I asked, “What do I do?” Her first response was, “You be strong for that precious little girl you have and you be thankful for all that will come.” After all the mushy stuff was over she proceeded to give me step by step instructions on what I needed to do even down to what color top tube to have the blood drawn into. Basically I was to get blood drawn. FedEx it to Dr. White in Minnesota and await results. If the tests came back positive we would then have to send blood to Maryland where it could be analyzed for types 1 and 4, the two types of HPS that come with the fatal lung disease. This was a lot of information to take in!!!! That night I am pretty sure that combined Justin and I probably slept a total of maybe 2 or 3 hours.

Wednesday morning rolled around and I was on the phone trying to locate a lab to draw Kennedy’s blood. No luck!!! No one wanted to draw the blood and give it to us to mail for legality reasons. They all wanted to test it themselves. I tried to explain that a simple blood test would not be able to find this disorder; it took a high powered electron microscope. I finally got a hold of Richard, a lab tech. Richard explained how he could not draw blood and then mail it to another lab or give it to me. He wanted to test it. I plead with him, “Dr. White is the only person who can do this test. He is the only one with the microscope. People in the UK even send their blood to him. This is my child, please help me!!!” He agreed to do it if we were there by 12:30pm. I called Justin and told him to hurry and get Kennedy and head to meet Richard. When Justin arrived Richard explained that he spoke to his supervisor and would no longer be able to draw her blood but was willing to try and help Justin. My poor husband waited as Richard called the many labs that I had already called and received the many “No” answers I had already received. As Justin walked out of the hospital… Kennedy and yellow top blood tubes in hand Richard told him to wait. A kind hearted lady in the lab had agreed to do it as long as Justin signed a consent form. Justin signed and they drew.

The next step- FedEx. Justin had to find a FedEx that sold the particular mailing pouch for hazardous material that we would need. About an hour and $46 dollars later it was on its way! Another night of no rest in the Gibson household.

This morning I was sick in the bathroom anticipating the results. This test could change everything. This test could be fatal. This test was out of my control. As I was ill Kennedy sat outside the bathroom door chewing on my bracelet and belly laughing at me. How innocent she was- she had no idea what was going on. She had no idea that in many ways her fate lay in the hands of this test. I knew that the blood should be in Dr. White’s hands by 10:30am this morning. At 10:00 I spoke with Marcy, Dr. White’s nurse, who informed me that they still did not have the blood. I had checked the tracking on it about 50 times and it said that it was on the truck in route at 8:22am. Where was it???? I called FedEx and the lady said, “We will notify the driver, I hope it gets there by 10:30.” I wanted to reach through the phone and strangle her…. She hoped it would get there? This was my daughter’s future. I called the lab back at 10:15am- still no blood. I called the lab back at 10:30am- still no blood!!! I called FedEx for the 4th time- not quite so calm this go around. A little irate I asked the lady, ‘Where is the blood?!” She starts pecking at the keyboard in front of her and replies with, “A B. Smith signed for it.” This time I was not letting her go to call the lab. With Marcy on one ear and FedEx lady on the other we were going to solve this!!! I asked FedEx lady, “B. Smith where???” A little put out she answers, “At shipping and receiving.” Marcy on the other phone is about as upset as I am wondering who this is and where is the blood- we are running out of time before the blood sample is no longer good for this test!!! Marcy tells me that she will investigate and get right back with me. At 11:05 my phone rings, “I found it at Riverside Hospital across the river from here. They are affiliated with us but not us. By noon we will call you back with the results.” We hung up and every emotion ran through me again. At 11:45 the phone rang and it was Marcy. My heart was about to jump through my chest- was my daughter consumed by this terrible HPS monster. “Mrs. Gibson your daughter, Kennedy, has tons of normal dense body platelets. She does not have HPS.” The Monster was dead!!!

With all the excitement I called the lab in Colorado to see if they had any news on the tests that they were running for Albinism types 3 and 4. Long behold they were getting ready to write her report. Our precious little Ken-Ken has Type OCA4 Albinism.

It is finally all over. We have an answer and it is not a fatal one.

NOTHINGS CHANGED. EVERYTHINGS CHANGED!

To You...

I just wanted to drop a quick note to say thanks. Thank you to the people who stay in constant contact and continually check on our dear family. Thanks for reading and responding to the blog- we love to know that you care!!! Thanks for making those quick phone calls to say, "Hey, I care and I am here." Thanks for sitting next to my desk while I lose it emotionally after getting devasting calls from labs. Thanks for the prayers.

You are the people who keep us going. You help remind us that we are strong.

Thanks for being you!!!!