Upright MRI

We are learning over and over again that going to NY was NOT a waste and that God had many reasons for us to be up there. One of the reasons was for me to get an upright MRI. I have had 2 brain MRI’s, and I have posted the picture with explanations. The difference the upright MRI shows is the effect of gravity and what my brain and some of my spine looks like when I am upright.

After pre-surgical testing on Monday, I was scheduled for the MRI. We got there around 1 and were expecting it to take 30 minutes tops... Or at least that is what the tech said... He explained everything, I sat in the machine and he started the MRI. No big deal, right... WRONG! After he finished the first series, he came over the intercom and said, "You need to sit really still and not move at all because this one was REALLY blurry. We are going to have to do it again." I didn't think I was moving, but maybe I was breathing too much. So he started again and I tried to breath less and more shallow. After it was over, he came into the room and said, "It was even blurrier this time!" He readjusted some things and tried again! This went on for like 30-45 minutes straight! I told the tech, "I am NOT moving! I don't know why this is coming out blurry!" He readjusted a few more things and went out of the room.

At this point we were all really frustrated and confused, so I just closed my eyes and prayed, "Lord, I know this is silly to ask, but please help me sit still! I am trying but he says I am not! And this is really starting to hurt, so please let it work this time!" I kept praying and concentrating on relaxing and trying not to think about how badly it was hurting! Then the tech came back in and said, "That was perfect! What did you do differently?" I said, "I prayed the whole time!" My mom and I had also noticed how low I had settled down and mentioned it to him... He said, "I noticed the same thing in your films and I was coming in here to raise the seat up." He had to raise the seat 6 INCHES to get me back to where I had started!!! In 30 minutes I shrunk 6 inches!!! We were shocked!!! He went back to the computer and finished the scans (normal, extension, and flexion)!

We came back out and I went to the computer to look at them... I asked him if I was looking at the one where I was leaning my head back and he laughed and said "Nope! That is when you are sitting up straight!" He continued to show me the other scans... Again, WE WERE SHOCKED!!! My odontoid bone was sticking into my brainstem REALLY far! I had NO CSF flow at the base of my brain, anterior (front) OR posterior (back)! My esophagus is extremely bent and almost completely closed! My neck was SO compressed! My Chiari was worse! And my spinal cord was too posterior in some places and too anterior in others! This MRI looked NOTHING like the supine MRI I had in December! If I hadn't been present at both, I would have thought they were done on two completely different people!!!

I think we are all still in shock at this whole situation… This was not at all what we were prepared for! We had prepared for months to go to NY for me to have surgery and then come home almost two weeks later for recovery! I must say, it is extremely weird to be back here, especially when I go to school! It is the strangest mixture of emotions I have ever had! But we know that God has a bigger plan for all of this! Once again, God is showing us how much He is in control and giving us “breadcrumbs” showing that we are on the right path!

Sitting up "straight":

Leaning forward:
Leaning backwards:

Tonight mom called me and told me to read Psalm 22 because she found a verse that God had written for me. I was reading the passage and came along verse 14. It says, “I am poured out like water, and all my bones are out of joint. My heart has turned to wax; it has melted away within me.” Oh how I truly feel this way! I continued to read farther down in the passage and came upon verses 19 and 24 which say, “But you, O LORD, be not far off; O my Strength, come quickly to help me.” “For He has not despised or disdained the suffering of the afflicted one; He has not hidden his face from him but has listened to his cry for help.” Over the past year and a half, this has become my prayer! I am constantly praying for strength and grace from God! I know there is NO POSSIBLE WAY I could’ve gotten this far without Him and I would NOT like to try to get through it without Him! I am always amazed at how He has worked in my life and done incredible things, but ONLY in His perfect timing! Everything is done on HIS time, not on my time, and according to HIS plan, NOT mine! His plan for my life is so much bigger and more amazing than any of the plans that I had! I am excited to see how this cancellation in our plan is going to work into HIS plan!

Thank you so much for your prayers, support and love! I appreciate it more than any of you could ever know!

Love,
Mackenzie

Home--Sooner than Expected!

Hello, friends.

I had no idea I would be writing to you from HOME this Tuesday evening, but that is what God had for us.

As you know, Mackenzie's surgery was canceled due to unforeseen circumstances in the surgeon's schedule. Of course, we know these circumstances were not "unforeseen," for the Creator of the universe wrote this day before time began. We trust His sovereignty and His GOODNESS.

The Chiari Institute is going to call us tomorrow for further planning.

Thank you all for praying . . . your prayers are not wasted. God hears and answers perfectly!

Love to you all,

Lisa

Surgery Canceled

I am a friend of Lisa's and am posting tonight for her as their laptop is not working right now. Mackenzie's tethered cord surgery scheduled for tomorrow has been canceled by the doctors due to unforeseen circumstances. They do not have a reschedule date as of tonight.

Lisa asked me to let everyone know, as she knows that you have been praying for them. They asked that I thank you and tell you how much they appreciate your prayers. Please continue to pray for them as they fly home tomorrow evening.

Lisa and Mackenzie will update as soon as they are able.
Thank you everyone.

Prom 2009 Pictures

Chapel at Oakbrook

Good morning, friends!

Matthew 10:27—What I tell you in the dark, speak in the daylight; what is whispered in your ear, proclaim from the roofs.

Yesterday, I was pondering this verse as I awoke and wrote a prayer to the Lord in response:
I love this verse, Lord, and the picture it paints in my heart--You, Lord, speak to me in the darkness, don't You? But You are not a far off God Who speaks from Your high place in heaven while I am alone down here trembling in the dark. You don't blast some ethereal edict through a spiritual loudspeaker hoping to be heard over the din and roar of the raging storm or the noisy crowd. No, You are not far off when I am in the dark. You, Lord, are right beside me, close enough to whisper in my ear. Now that is close! Whisper, Lord, whisper. Speak, Lord, for Your servant is listening. I will boldly speak in the daylight what You have told me in this darkness. I will proclaim from the rooftops what You have whispered in my ear!

This morning Mackenzie will have her first opportunity to speak in the daylight what Jesus has whispered in her ear in the dark! She and her friend, Nick Napier, who has the same conditions Mackenzie has, will speak in Chapel at Oakbrook at 11:40 this morning.

Please be praying for them, as neither of them seeks attention for themselves; their only desire is to honor the Lord and bring awareness of Ehlers-Danlos to our community.

Please also pray that the hearts of the students will be open to hearing about God’s grace and mercy, and if even one does not know our God of hope through faith in Jesus Christ that today would be the day they surrender to His love.

Thank you again for praying . . . Tomorrow evening I will post pictures of the Zebra Run and prom!

Love,
Lisa

New Addition to Zebra Run

After the Zebra Run, Saturday April 18th, we invite you to have lunch at Schlotzsky's on Hwy. 29! Scholtzsky's is donating a percent of the proceeds to Sami and Nick Napier! If you are unable to join us at the run, please come to Schlotzsky's and support them in that way! There will also be a table for donations.

If you are unable to come to either of them, please check out their website (www.zebrasdoexist.com). You can also make donations online at: http://www.active.com/donate/zebrasdoexist.

Thank you for all of your support! It is greatly appreciated! I hope to meet some of you at these upcoming events so I can thank you in person!

Love,
Mackenzie

Find rest, O my soul, in God alone; my hope comes from Him. Psalm 62:5

Zebras Do Exist

Throughout my journey, God has blessed us with some incredible people! Mom and I have shared many of their stories with you, but we have yet to share one of the most important stories! It is the story of one of the first people God used to help put us on the path to a correct diagnosis!

On November 4th when we were still searching for a diagnosis, I had a terrible appointment where I was basically told that I was faking everything. We were very discouraged and did not know where to go from there. Later that day, my mom received a call from a woman named Lori Napier. Our friend, Ms. Debbie, had told her to call my mom because her children (Sami and Nick) had been through a lot medically over the past few years. As Lori was explaining their journey thus far, she asked my mom if she had ever heard of Ehlers-Danlos. She was shocked when my mom said, “Yes, I was just reading about it online, because Mackenzie has a lot of the symptoms!” As they continued to talk, they realized how similar I was to Sami and Nick!

We now know that we have all of the same conditions, except for a few differences! Nick went 7 years undiagnosed and Sami went 5 years! They have irreversible damage on their brainstems! I am SO blessed to have found a diagnosis so soon! My journey is much shorter than most people’s BECAUSE Lori had the courage to share the story of their difficult journey! They have been so helpful and I will be forever grateful!

To learn more about Sami and Nick visit:http://www.caringbridge.org/visit/samanthanapier.

Throughout my experiences with Ehlers-Danlos, I have found that it is NOT as rare as the statistics say it is! It is commonly misdiagnosed as Fibromyalgia, Lupus, MS, and other autoimmune disease, because most people are not aware of EDS! I feel like God is leading me to use my experiences and the experiences of my fellow EDSers to spread awareness about our conditions! It is very important for me to help people learn more about EDS and related conditions and to help others who have been diagnosed! If it weren’t for Lori calling my mom that day, who knows how long I would’ve gone without a diagnosis!

I have an opportunity to help the Napier’s and spread awareness about EDS, and I would like your help as well! They are having the Second Annual Zebras Do Exist 5K Run/Walk to raise money for their medical bills! Sami and Nick have both had the tethered cord release surgery, craniocervical fusion/decompression surgeries, and several other expensive medical procedures and appointments! Insurance did not cover all of the surgery costs or any of the travel expenses! In an effort to meet their financial needs, there are many opportunities for you to help!

Ways to help:

If you or someone you know would like to participate in the run, please register online at:
http://www.active.com/page/Event_Details.htm?event_id=1651514&assetId=4c391b88-9e13-44c2-953e-c8ba48177d84.

If you do not want to participate or are unable to, donations are greatly appreciated! You may make them at:
http://www.active.com/donate/zebrasdoexist.

If your company or any company you know would like to be a sponsor, please visit this link:
http://www.zebrasdoexist.com/2009%20zde%20sponsorship%20package.pdf.

You can always help by forwarding this information to friends and family! Please keep the word going so we can have as many people involved as possible!

To learn more about the run visit: http://www.zebrasdoexist.com/.

Thank you in advanced for your help! It is appreciated more than I can ever express in words!

Love,
Mackenzie