A Thousand Words Are Good... A Million Words Are Better!

I apologize for the delay in posting! It has been very busy here, but in a very good way! I have been back in school and driving everyday! What is even more exciting than that is I am dancing again! I am overwhelmed with joy and thanks for this amazing answer to prayer! God has done more than we could ever ask or imagine!

I am leaving tomorrow to return to Bethesda for my 3 month check up. I will also be sharing my story at a meeting of the Washington DC Chapter of the Chiari and Syringomyelia Foundation. I will also be giving Dr. Henderson a letter that I would like to share with all of you.

　

Dear Dr. Henderson,

Today is my three month “birthday,” or, in other words, I am three months postop today! This day is more than just a medical milestone; it marks three months without a headache, three months with strong legs, three months of sleeping well, three months of standing on my toes, and three months of feeling like the “real” Mackenzie. Those are things that I had not felt or been able to do in almost two years and things I was not sure I would ever be able to do again.

As I look back on my summer in Bethesda, I am reminded of the story in John chapter 5 about a lame man who had been waiting by the pool at Bethesda. The word “Bethesda” literally means “the outpouring of God’s mercy.” This pool was thought to have healing powers, and the superstition of the time was that when the waters were “stirred,” the first person in the pool would be healed. Since the man was lame and had no one to carry him to the waters, he never made it quickly enough into the pool. Day after day, year after year, he waited for healing. One Sabbath, Jesus approached the lame man and asked, “Do you want to get well?” The man responded, “I have no one to help me get into the pool when the water is stirred.” Then Jesus said to the man, “Get up! Pick up your mat and walk.” The man quickly did just as Jesus said and picked up his mat and walked. This man who had been lame for 38 years received his long-awaited healing at Bethesda.

Although my recovery included two surgeries and was less dramatic than picking up my mat and walking, I, too, was restored to good health in Bethesda. God certainly did more than we could have ever asked or imagined.

I want to thank you, Dr. Henderson, for helping me to the “pool.” You did not turn a blind eye to the girl who could not move quickly but instead chose to allow God to use your hands for His will and glory. Because of this and the outpouring of God’s mercy, this same girl is dancing once again!

I am praying for you and for what God is doing through you to help so many patients. May He bless you and continue to guide you as you serve Him!

I want to close this letter with Psalm 30:11—You turned for me my mourning into dancing!

With love and gratitude,

Mackenzie L. Mathis

　

There is a common saying, “A picture is worth a thousand words.” So here is a picture that is worth at least a thousand words!

So if a picture is worth a thousand words, then a video should be worth about a million words!

http://www.youtube.com/watch?v=wYptxUuiETQ

Once again, thank you all so very much for your prayers and support!

Love,

Mackenzie

Mackenzie's Improvements

First of all, let me begin by apologizing for our delay in posting an update. I know you have continued to check the blog and have been wondering how Mackenzie is doing.

Well, our delay in posting is good news! Although when we first returned home she was tired and needed extra rest, she is feeling so well now that she is actually busy getting ready for the new school year to begin in two weeks.

For those of you who are also involved in the Ehlers-Danlos, Chiari, and tethered cord world, you know there is no “cure” for these conditions. Surgery is often performed, however, to help minimize, prevent, and, in some cases, alleviate some of the debilitating symptoms associated with these conditions. We have come to understand that a key factor in achieving positive results with the surgeries is early diagnosis. Fortunately, Mackenzie’s journey from the time of onset of her symptoms to the time of treatment was a relatively short one, less than two years. There are other patients in similar situations who have struggled for 5, 10, even 20 years to find proper treatment and some have had less than optimal outcomes.

By medical standards, Mackenzie’s surgeries were successful. The anatomical abnormalities were corrected: Her tethered spinal cord was released by the first surgery and the Chiari malformation and cranial settling and instability were corrected by the second surgery.

By patient and parental standards, we can also thankfully call these surgeries successful. Let me tell you about some of the improvements:
Headache: She awoke from the anesthesia of the second surgery without a headache for the first time in almost two years, and, so far, she still has no headache.
Walking: She is now able to walk at a normal pace with a normal stride and is even able to once again walk on her tippy-toes. She is ready to sell her wheelchair and throw away her handicapped tags! :)
Tachycardia (rapid heart rate): Her heart rate returned to a normal rate and rhythm after the first surgery.
Joints: Her joints seem much stronger, and the aching and tingling has subsided.
Cognitive ability (thinking): This has also gradually improved. She has already finished reading one novel and has started a second.

Mackenzie has a followup appointment with Dr. Henderson on August 10th; she and I will fly to Bethesda on the 9th and will return home on the 11th. Thank you in advance for praying for our trip.

We, of course, will never be able to express our gratitude to all of you who have prayed for us and with us over these months. The Lord has answered these prayers in powerful ways. He has surely done more than we could have asked or imagined (Ephesians 3:20).

We ask that you continue to pray for Mackenzie, as her journey with these conditions will be life-long. We ask that you pray for continued improvement and strength in her body and mind.

We were challenged by a friend recently to make sure we praised the Lord as fervently as we prayed for Mackenzie. So, that is what we are doing—praising the Lord for His unending faithfulness.

We love you all,
Lisa & Mackenzie

PS—For any of you who suffer from Ehlers-Danlos, Chiari, tethered cord, and related neurological conditions, feel free to contact us directly at mackenziemathis@live.com if you have questions regarding her treatment. We have been helped tremendously by those who were willing to share information with us as we sought treatment, and we hope we are able to do the same for others.

Home Sweet Home

Hey everyone! I just wanted to do a quick post to let you know we a settled back in at home safe and sound!

We have enjoyed seeing all of you and wanted to thank you for the nice treats, meals, and cards we have received! It means so much to know how much you all care for us and how much you are praying for us!

Quick update on my health: I am feeling really good overall! Last night, I stopped the muscle relaxers completely and cut the pain medication in half! This is amazing! I have prayed since the beginning of these surgeries that I would not have to rely on pain medication, and God has answered that prayer! God has answered so many of your prayers!

In a few days, I will write a post letting you know the answers to those prayers and the improvements I have seen from surgery.

I better go because I am dozing off… Thank you again for everything you have done for my family and me!

Love,
Mackenzie

On the Road Again

This is just a quick post to let you know we are heading home. We have about an eight hour drive in front of us, but we are going to take our time.

When we get home and settled in, Mackenzie is going to post to tell you about our experiences here. God has surely blessed us.

Thank you all for praying.

Love,
Mitchell, Lisa, & Mackenzie

Christmas in July

We had such a treat this morning! Our friend from home, Mariana, came bounding into Mackenzie’s hospital room, bearing gifts from our friends at church. She brought candy, cards, coffee, and lots of love! It was as if God shined the sun directly into our room.

Other good news: Mackenzie worked with the physical therapist this morning and walked around the “block” and climbed some stairs, the oral pain meds are working, and we are going back to the soft, cozy beds of the hotel!

We still have not decided what day we will begin our journey home, but we are moving in the right direction. Mackenzie has an appointment with Dr. Henderson tomorrow in his office, so we will make more definite plans then.

To those of you who sent your goodies and love with Mariana, thank you, thank you, thank you!

Thank you all for praying!

Love,
Mitchell, Lisa, Mackenzie & Mariana

All you want to know about Mackenzie's surgery--and more!

Some of you have asked us to explain Mackenzie’s surgeries in detail, so I thought I would write a short post to give you that information. So, here’s your warning: If you are not interested in the “gory” details, you can skip this post! ;)

The surgery Mackenzie had on June 26th was to release her tethered (“tied down”) spinal cord. In layman’s terms, your spinal cord is attached to the bottom of your spinal column by a piece of connective tissue called the filum terminale. This tissue acts like a rubber band, keeping the spinal cord in proper tension as the body grows in childhood. In patients with Ehlers Danlos this piece of tissue often malfunctions, creating too much tension on the cord. This can cause many neurological symptoms, including back pain, leg pain and weakness, numbness, tingling, etc. So, at the first surgery, Dr. Henderson opened Mackenzie’s spinal column through the sacral spine (the lowest part of her back), made about a 3” incision, cut out some bone to expose the cord, opened the dura (the tissue that surrounds the spinal fluid and spinal cord), and snipped the filum terminale thereby relieving the tension on her spinal cord.

The surgery that was performed Friday was on Mackenzie’s skull and neck. She had a decompression surgery to create more room at the base of her skull for her brain stem and cerebellum. This surgery was necessary because Mackenzie has a Chiari malformation, meaning her cerebellar tonsils (bottom of the cerebellum) descend into the spinal column. Dr. Henderson cut out a piece of Mackenzie’s skull measuring 2x4 cm. (She got to keep a piece of it if you want to see it!)

Also due to the Ehlers Danlos, Mackenzie has something called craniocervical instability and cranial settling. This has caused her skull to move out of position in relation to her neck and also settle down too far, putting more pressure on her brain stem and cerebellum. So, Dr. Henderson fused her head to her neck bones down to the third cervical vertebra. He used plates, screws, and rods, as well as bone from two of her ribs right below her left shoulder blade.

The incision for the decompression/fusion is about 5" long (starting at the base of her skull down to about half way on her neck), and the incision where Dr. Henderson took parts of two ribs is about 4" long. He had a plastic surgeon come in and close these, and they are very thin and should heal beautifully.

These two surgeries are not usually done in such quick succession, but it was necessary in Mackenzie’s case. She is thankful to have the surgeries behind her and is ready to move on to the recovery phase. She is doing well and is in very good spirits. We are all looking forward to coming home soon!

By the way, we did not play Scrabble today--maybe tomorrow!

Thank you for continuing to pray for us.

Love,
Lisa

Sunday's Update

Good morning from Maryland!

Mackenzie continues to do well. She is having the expected surgical pain, but her headache (the one she has had for almost two years now) is much improved. This is an answer to our prayers! Please pray for this to continue.

Another prayer request we have is that Mackenzie not develop pneumonia. Dr. Henderson used parts of two ribs under Mackenzie’s left shoulder blade as the bone fusion material for her neck. As you can imagine, taking deep breaths is uncomfortable, so there is a risk for pneumonia.

Mackenzie was able to sit up yesterday and even stood up once with physical therapy. The therapist will come twice today to get her up, and the goal is for her to walk some today.

Another of our goals today is to play Scrabble! Mackenzie and I love to play Scrabble. One of the first times we noticed she was having a hard time cognitively was when she could not remember the sequence of the alphabet to look up a word in the dictionary while we were playing Scrabble. So, we are going to do our own experiment! Mitchell was so sweet yesterday to go buy this game so we could play! I will let you know who wins! ;-)

We continue to be amazed by God’s grace! He has given us wonderful caregivers who have become our dear friends!

We pray you will see the beauty of the Lord today in all things!

We love you all,
Mitchell, Lisa, and Mackenzie

Mackenzie is in her room

Well, Mackenzie is all settled now in her REGULAR room! No ICU because she is doing so well!

Although she is on pain meds and a little "loopy," she is reading all the text messages her friends have sent her throughout the day and is actually answering them. She has a pain pump but has not pushed the button in over two hours.

Some of the nurses that took care of her last time are here tonight and are trying to spoil her rotten! We have been blessed to have great caregivers here.

Dr. Henderson said when he comes in the morning he is going to get Mackenzie up, and we will let you know how that goes.

Thank you all for praying for us today. Truly, the Lord bore us up on eagle's wings and renewed our strength in answer to your prayers. We pray He continues the healing work He has begun in Mackenzie's body so that we can come home soon!

Love you all,

Mitchell, Lisa & Loopy Mackenzie

Out of Surgery!

This is just a quick post to let you all know Mackenzie is out of surgery. Dr. Henderson came out a few minutes ago to tell us everything went very well.

Mackenzie will spend one night in ICU and then move to the intermediate care floor for the rest of her inpatient stay.

They will allow us to go into the Recovery Room with her in about 30 minutes. I will post more after I have seen her and talked to her.

Thank you all for praying!

Love,
Mitchell & Lisa

Mackenzie is in Surgery

We wanted to let you all know Mackenzie was taken back to surgery around 11:30, and Dr. Henderson estimated she would be out around 5:00 pm.

Before they took her to the OR, Dr. Henderson came into the preop area to check on Mackenzie and answer a few more of our questions. Mitchell asked if we could pray together before they went back, and Dr. Henderson eagerly said, "Absolutely!" He grabbed my hand, put his other hand on Mackenzie's head, and before Mitchell or I could say a word he began praying. He asked the Lord to guide his hands as he served Him, to protect Mackenzie, and to restore Mackenzie to full health to be used for the Lord's glory!

As you can imagine, this gave us great comfort and peace. Mitchell did, however, give Dr. Henderson a reminder. A few years ago, Dr. Henderson did this same surgery on the princess of Saudi Arabia. Mitchell reminded him that today he was operating on the princess of South Carolina! Dr. Henderson assured Mitchell he would take good care of his girl. (See picture below--Dr. Henderson with the Princess of South Carolina.) :-)


We are sitting right now in the cafeteria enjoying Mitchell's birthday lunch! Thank you all for the kind birthday wishes you have sent to him.

We have also had an opportunity this morning to meet the parents of another of Dr. Henderson's patients. Their daughter also has Ehlers Danlos and had tethered cord release this morning. It was a blessing to spend time with them sharing stories.

We will update later. Thank you for praying. In your time praying for Mackenzie, please praise the Lord for the many blessings He has poured out upon our family.

We love you all,
Lisa & Mitchell

My Strange Vacation

Many of you have asked me how I am feeling and what these past few days have been like. I figured I would let you know what it has been like here in Bethesda, MD.

I am not really able to go out so most of my day is spent in the bed at the hotel! This sounds a lot worse than it is! The bed is VERY comfortable and the room is spacious! There is a pool on the roof so I have been able to go up and get some fresh air a few times! The weather here is amazing! I love it! It has been in the 80’s with a nice breeze during the day, and at night it even gets a little chilly!

There are so many wonderful places to eat within walking distance, so we are not going hungry! The hotel also has very reasonable room service that we have taken advantage of many nights when it was too late for mom to go out to pick up something! My appetite has been a little out of whack in the past month, but hopefully will go back to normal soon! I am just thankful to be able to eat at all… Many people with my conditions lose their appetites or the ability to eat completely!

Most teenagers would hate being stuck with their parents in a hotel room for 2 weeks, but I have actually enjoyed it! If I were “healthy” I would never get to spend so much time with them! We have had a great time laughing and joking around! It has made all of this so much easier! It is not “easy” going through all of this, but we are adapting! I did want to give you a mental picture of what it is like here and didn’t want you to think we are sitting around all day sad and worried! It is actually completely opposite! We are very excited and happy and smiling! This is actually very relaxing and almost seems like a vacation! Sounds kind of strange to call 2 major surgeries and many trips to the hospital a vacation, but what can I say, my whole life is a little strange!

So on a more serious note… Surgery is tomorrow! I can’t believe I am only 2 weeks post-op and heading back to the hospital for another surgery! I am SO excited! I have no fear about this at all! God has answered all of our prayers for peace and comfort for this surgery! I know that this surgery is a blessing and it is a miracle that I am able to have it so soon!

My surgeon is also a HUGE blessing! He genuinely cares about me and has made that very clear to us! I don’t know many neurosurgeons who will answer their cell phones at 3 in the morning on a holiday! He is also shared with us that he and his wife are praying for me and that they will pray for me tomorrow morning together before he does the surgery! This means so much to me! I am very blessed to be here and have him as my surgeon! God definitely put us on the right path by canceling my surgery the first time! We feel very blessed to be here!

“Thank you” doesn’t even begin to express my appreciation for all of your prayers!!!! I have seen so many of them answered especially in the past few days! But that is for another post! Please continue to pray for the surgery tomorrow, wisdom for Dr. Henderson, peace and patience for my parents and family, and a quick recovery!

It is also my dad’s birthday today, so Happy Birthday Dad!

Love,

Mackenzie

Perspective

Two weeks ago today, Mitchell, Mackenzie, and I boarded a plane bound for Bethesda, MD. Our plan was for Mackenzie to have her tethered cord surgery, stay in the hospital a day or two, recover at the hotel for a few days, and then fly back home on July 1st. Obviously, our plans have changed, as here we sit on July 9th facing a second, more serious surgery tomorrow.

If you read that first paragraph from an earthly point of view, it would seem to be a very bleak, confusing, stressful picture. Let me just tell you there is no hope in looking at this situation from a human perspective.

Those of you who know us well know that we came here begging to see God’s hand at every turn, and we have--from finding a new physician to being scheduled for a surgery that had been canceled previously to people praying for us (new friends here in Bethesda and dear friends all over the world) to nurses to restaurant owners to peace that passes all understanding to the working out of EVERY detail! That is the perspective from which we choose to view this trial. We pray you see it this way too!

We ask you to continue to pray for Mackenzie and especially for the surgery tomorrow, which will take place around 11:30 a.m. Pray that the Lord will guide Dr. Henderson’s thoughts and hands. Pray for Mackenzie to have peace as she goes through the preop process for the second time in two weeks. Pray for just the right nurses to care for her afterwards. Pray for us as we wait for the 5-6 hour surgery to be complete. Pray for those who are waiting and watching from afar. Pray most of all that the Lord would bring much honor and glory to His Name as once again He proves Himself faithful and worthy.

We love you all and pray for you daily!

Mitchell, Lisa, and Mackenzie

No Halo--again

Hello, friends.

Our day started early this morning. Mitchell left for the airport around 5:30 to catch his flight. Thankfully, he made it home safely. He plans to drive back up here sometime Thursday.

Mackenzie and I made our way over to Dr. Henderson’s office around 7:30 for the halo placement. Without going into all the details, I will tell you Mackenzie did experience much pain from this procedure. In fact, she had so much pain Dr. Henderson decided to remove the halo after about an hour. She is doing better now, but obviously it was not the Lord’s plan for Mackenzie to have a halo.

The plan is still on for Friday’s surgery. Dr. Henderson is going to call us later this afternoon to discuss the details of the procedure.

Thank you all for praying for us today.

Love,
Lisa & Mackenzie

No Show Halo, Really Good Gelato

Let me explain the title! The medical equipment rep was unable to get a halo to Dr. Henderson's office in time for our appointment, so Mackenzie will have the halo placed at 7:30 in the morning.

So, instead of getting a halo this afternoon, she got some gelato. Our new friend Greg owns an Italian restaurant right outside the hotel and fixed Mackenzie up with a tasty treat!

The surgery is still scheduled for Friday morning. Mitchell is going to fly home tomorrow morning, go into the office on Wednesday, and then drive our car back here on Thursday. That way we can drive home instead of fly when Mackenzie is released from the hospital following her surgery.

Please pray for Mitchell's safe travel and for Mackenzie's comfort in the halo.

We love you all,

Lisa

Further Plans

This is just a quick post to let you all know what is going on right now. I will post more details later today.

The decision has been made to go ahead and do Mackenzie's decompression and fusion surgery this Friday (July 10th). This afternoon at 3:00, Dr. Henderson is going to place Mackenzie in the halo to find the optimal position of her head. She will remain in the halo for a few days and then have the surgery.

We ask you to pray with us for Mackenzie's comfort in the halo as well as the peace about the surgery. We feel this is the right thing to do, but if the Lord wills otherwise, we want to know!

Thank you for praying.

Love you all,
Lisa

No Lumbar Puncture

Well, we are back from our long day at Johns Hopkins. Mackenzie had negative blood work and new spinal MRIs, which were also normal.

Throughout the day, her leg symptoms improved to the point she passed her neurological exam and we were allowed to leave. I know you all were praying--God heard and answered your prayers.

We still are not sure when we will return home. Her headache is still bad when sitting. We are weighing our options, so please pray for our wisdom in making this decision.

We are going to eat some supper and then wheel Mackenzie up the rooftop to watch the fireworks.

Love you all,

Lisa

Please Pray

Good (early) morning.

I am writing to ask you all to pray for Mackenzie.

We are still in Bethesda and spent most of the day in the ER of Doctors Community Hospital (the hospital where she had her surgery) where the doctors were trying to alleviate her headache.

They gave her a round of steroids and two bags of IV fluids thinking this was a "spinal" headache, which is not unusual after a spinal surgery.

It did not really help the headache much, but we came back to the hotel. The steroids did give her a little more energy, so we enjoyed a perkier Mackenzie for a little while.

I fell asleep before she did, but she woke me up telling me her legs were hurting. The pain continued to worsen in her legs and also started in her left arm. About 2:30 am, things were so bad we called Dr. Henderson. He graciously talked with me for over an hour and walked me through a battery of neurological tests to do on Mackenzie.

After thinking it through, he has asked us to meet him at Johns Hopkins ER at 7:00 this morning where he will do a lumbar puncture and more blood work to try to determine the cause of all this pain. He is trying so hard to help her, and you can hear almost parental frustration in his voice as he is at a loss right now.

Please pray for a successful lumbar puncture with no adverse side effects. Pray also for the cause of her pain to be found along with treatment.

We know we are in the right place, but we need the Lord to shed His light on this medical mystery.

Thank you all for praying!

Love,

Lisa

I know many of you have been wondering how Mackenzie is doing today.

She still has a very intense headache, dizziness, and nausea when upright. Dr. Henderson saw her this morning and ordered a CT of her lower back to rule out a spinal fluid leak. The CT thankfully was clear.

He then ordered a new MRI of her brain, which was completed this evening. He will look at the films first thing in the morning and we will see him early.

Please pray for her headache to subside and for wisdom regarding the next step. With the pain she has right now, flying home is not an option. She needs something to alleviate this pain.

Thank you all for praying and keeping up with Mackenzie's progress.

Praying with you,

Mitchell, Lisa, & Mackenzie

Stay in Bethesda Extended

Good morning, everyone.

We wanted to let you all know our stay in Bethesda has been extended. Mackenzie is still experiencing an excruciating headache, and the oral pain meds are not relieving it. She is also dizzy and nauseated, so, needless to say, a day of travel would be intolerable for her.

Dr. Henderson is going to meet us at his office late this afternoon when he finishes the surgeries he has scheduled for today.

We have been able to change our flights to Friday afternoon and extend our hotel stay.

Thank you all for praying for us. God's timing for our return home will be perfect.

Love you all,
Mitchell, Lisa, and Mackenzie

Out of the Hospital

Yay! Mackenzie has been released from the hospital, and we are settled into the hotel. She is resting comfortably in a much cozier bed!

She is still struggling with dizziness and some nausea after she is up for very long, so we are praying this will subside before we leave tomorrow, as there will be no where to lie down at the airport or on the plane.

Dr. Henderson's plan now is to move ahead in the next few weeks with the fusion after a week long trial in the halo, which will be done up here the week prior to the surgery. That means there will be no traveling with the halo, which was a concern of ours.

Thank you all again for praying. I will probably not update again until we get home tomorrow night.

Love,

Mitchell, Lisa, and Mackenzie

Staying One More Day

As you know, Mackenzie was supposed to be released from the hospital this morning, but things have changed a little. She is very unsteady on sitting and trying to stand. She was very dizzy and nauseated and had a great increase in her headache. So, it was decided another night in the hospital would be a good idea.

Please pray for her strength and energy to increase over the next few hours so she can be up more and adjust to being upright.

Thank you for your prayers for Mackenzie and the rest of our family.

Love you all,
Lisa

Surgery-- Day 3

Today has been a calmer day! No bomb threats (which turned out to be an ordinary box someone must have dropped and left in a doorway)! Mackenzie has also been free of nausea. She has been sitting up in bed and also stood up briefly with the physical therapist. She was dizzy, but that is to be expected.

The plan is for her to be released tomorrow around lunchtime, after which we will return to the hotel until Wednesday. I am sure we will see Dr. Henderson in his office before we leave as well.

Thank you all for praying!

Love,

Mitchell, Lisa, and Mackenzie

Surgery--Day Two

This is just a quick note to let you know Mackenzie is resting well. She has the usual postop pain along with joint pain from being in one position so long, but the nurses are working very hard to keep her comfortable. We are very thankful the pain meds are still working, allowing her to rest. She has been able to eat a little bit today (a roll and some chocolate gelato), so that will help her feel better too.

Aside from the medical happenings of the day, we did have a bit of excitement early this morning. Around 8:30 a loud voice came over the intercom saying, “Code Gold, Code Gold!” I noticed the nurses start scrambling around, and our nurse poked her head into the room and said, “Gather your things. . . we are being evacuated . . . this is not a drill!” Well, Mackenzie cannot even raise her head per doctor’s orders, so they had to unplug all her equipment and wheel her, bed and all, out of the room to a secure hallway in Radiology.

It turns out there was a bomb scare. We never heard if it was a hoax, a mistake, or the real thing, but the authorities evidenty took care of it and we were allowed to return to the room after about an hour. The funny thing is that Dr. Henderson was just coming down the hallway to see Mackenzie during his morning rounds, so we were able to have a nice long chat about things while we waited.

Tomorrow morning she should be able to sit up, and then she will probably be released Monday morning. Dr. Henderson is being cautious with her, and for that we are grateful.

Thank you all so much for praying. I prayed for you this morning too!

Love you all,
Lisa

Surgery--Day One

We wanted to let you all know Mackenzie did well. The surgery took about 3.5 hours, and Dr. Henderson said everything went as expected.

Although the original plan was to stay in the hospital only one night, Dr. Henderson feels it is necessary for her to stay until Sunday or maybe Monday. The reason for this is that patients with Ehlers Danlos tend to develop spinal fluid leaks, and he wants to avoid that. She will be flat on her back for 36 hours. She should be able to get up Sunday morning.

Right now she is sleeping, as she is full of meds. Thankfully, the Lord answered our prayers (yours, too), and they found a pain med that works well. They also have her on blood thinners and a muscle relaxant. Needless to say, she is a little “out of it.”

So, friends, thank you for praying our family through this day. God answered in very speciific ways.

I will post more tomorrow!

Grace, peace, and love,
Lisa & Mitchell

Surgery Time Change

We just wanted to let you know Mackenzie's surgery will now take place at 10:00 this morning.

Thank you for praying!

Love,
Lisa & Mitchell

Grace and Peace to you

I just wanted to leave a quick note to let you all know how I am feeling about surgery. My dad asked me yesterday evening what was going through my head as I am about to get on another plane and have surgery. I have had several people ask me this so I figured I would share this with you.

I have a strange peace over me. It’s very difficult to explain other than I am just at peace with all of this. I know that this peace is from God alone! It’s not the doctor giving me peace, or my parents, or my friends, or anyone else! I am not afraid or nervous or anxious or worried! I have nothing to worry about! I am in God’s hands! A family friend came by the other day to pray with my family before we left, and he said something that really stood out to me! The surgeon will be holding the scalpel, but God will be guiding the hands of the surgeon, because He is the ultimate physician! I trust that God will take care of me and that His Will will be done, and not my will or anyone else’s!

I have learned through my struggles that I never would have chosen this for my life, but I am SO glad that God did! To some of you that may sound strange, and I guess, in a way, it is! But I wouldn’t go back and change any of this if I could! There are so many things I wouldn’t have learned, and so many amazing people I would have NEVER met! More importantly, this struggle has made me rely on God every single day for strength, peace, grace, and patience! I have learned what it means to fully trust in Him! People will leave and disappoint, but I know that God NEVER will! And learning that alone makes ALL of this worth it! It is easy to trust God when life is easy and going great, but it is not until things start going “wrong” that our faith in God is really tested! I am so glad to have learned this at such a young age!

Yesterday a friend texted me and said that she was praying Psalm 103 for me. I wasn’t sure what it said, so I looked it up, and I am so glad that I did! It was a great encouragement! I want to share a part of it that really meant a lot to me!

Psalm 103:2-5~
“Praise the LORD, O my soul, and forget not all his benefits- who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's.”

God had really shown this to me over the last 8 months. Despite the many things I have “lost” because of my conditions, I have gained many “good things.” This is something that I haven’t written about on the blog, but I feel like God is leading me to share this with you.

It was 8 months ago today that I lost the ability to dance. I am not going to lie, I was pretty angry about this and I let God know that! I knew God is bigger than my anger and He already knew what I was feeling! I had my life figured out, or so I thought! I was going to graduate in May and in August attend the University of South Carolina as a dance education major. I was going to teach dance and share this passion with others as it had been shared with me! I wanted to be able to impact someone’s life the way my amazing dance teacher, and now close friend, impacted mine! I will be forever grateful for the wonderful passion she shared with me! It was not only a passion for dance, but also for God!

It was and still is a daily struggle to wake up and know that I cannot dance! It may seem strange, but I mourn my loss of dance! It was a huge part of my life and my relationship with God! I spent the last 2 summers at school in the dance room! Most kids are so excited for summer so they can be away from school, but not me! I was excited for summer because it meant I could spend countless hours in the dance room! It was not only a place where I could work on my technique, creativity and choreography; it was the place where I felt closest to God! There is a quote by Glade Byron Addams that says, “It is of course possible to dance a prayer!” That statement was definitely true in my life! Some days I would beat prayers into the dance floor for hours!

I miss those days a lot, but I am so thankful for the time that I was able to have that passion for dance! Some days, like today, it is very difficult to be without dance. But I will get through it because I know there is a reason for my struggles! This is my purpose in life! I thought it was to reach others through dance, and maybe I have. But I have another purpose for my life… It is to reach others through my suffering! I had big plans for my life, but God had bigger plans!

In reading some passages last night, I found a few that I wished to share with you.

Psalm 119:49-50~
“Remember Your word to Your servant, for You have given me hope. My comfort in my suffering is this: Your promise preserves my life.”

Romans 5:1-5~
“Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out His love into our hearts by the Holy Spirit, whom He has given us.”

Romans 8:18~
“I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.”

1 Peter 4:12-13
“Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when His glory is revealed.”

1 Peter 5:7-11~
“Cast all your anxiety on Him because He cares for you. Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that your brothers throughout the world are undergoing the same kind of sufferings. And the God of all grace, who called you to His eternal glory in Christ, after you have suffered a little while, will Himself restore you and make you strong, firm and steadfast. To Him be the power for ever and ever. Amen.”

Sorry this was such a long post! I meant for it to be a short post letting you know how I was feeling! But God had more things for me to say! I am thankful for the opportunity to share my experiences, both good and bad, with you! I want to thank you from the bottom of my heart for all of your support, prayers, and kind words! It is always a blessing to read your sweet comments! Words cannot express how much it means to me to know that you are praying for me! We have seen how powerful prayer is and we are definitely going to need it over the next few days!

There are a few things that you can pray specifically for:
1. Safe travel to and from Maryland.
2. Wisdom for the anesthesiologist to find a pain killer that works on me.
3. Wisdom and guidance for Dr. Henderson (the surgeon) and the other nurses in the OR.
4. Peace and patience for my parents, because I know this is not an easy thing for them to see their child go through.
5. God will use this experience to help others.

Thank you once again for all of your prayers! Mom will update when I am out of surgery and as there is any news!

Love,
Mackenzie

Change in Surgery Date

Good morning . . . Dr. Henderson called earlier this morning to tell us Mackenzie’s surgery will now take place this Friday!

Mitchell, Mackenzie, and I will fly to Bethesda on Thursday, June 25th, and it is our plan to return on Wednesday, July 1st.

We hope to be able to update the blog while we are away.

We thank you all for praying!

Love,
Lisa & Family

Surgery Scheduled!

This is just a short post to let you know Mackenzie’s tethered cord surgery has been scheduled for June 29th at 11:00 a.m. Thank you for praying!

Love,
Lisa

Home Sweet Home . . . Without a Halo!!!

Wow! This is not what I was expecting to write to you about today! I was expecting to be telling you how difficult it was to go through an airport in a halo and how I was adjusting to life with four screws in my head! But as you know from the title, I AM NOT IN A HALO! Praise the Lord! We should have known to expect the unexpected, because that is the story of my life! I will try to give you a brief summary of what happened in the past four days in Bethesda, MD!

Sunday, June 14
We arrived in Baltimore at about 1 pm. We drove straight to the Inner Harbor of Baltimore for lunch before heading to the hotel! After we settled in we decided it would be a good idea to find Dr. Henderson’s office, as we would not want to get lost and arrive late to our first appointment. The office was less than five minutes from the hotel! We explored the surrounding area for a little while and then headed back to the hotel for the rest of the night!

Monday, June 15
My appointment with Dr. Henderson was scheduled for noon, but we really expected to wait in his office for a long time. We didn’t wait more that 15 minutes after we had filled out the paperwork! A nurse in the office put us in a room and the doctor came in shortly after. We filled him in on my medical history, which he already knew for the most part, because we sent him a 70 page file of my records!

MACKENZIE ASKED ME (LISA) TO FINISH THIS, AS SHE IS GETTING TIRED.

Dr. Henderson listened intently and spoke compassionately directly to Mackenzie. He did a thorough physical examination and then took us into his office to go over Mackenzie’s radiological studies.

He pulled them up on his computer and explained what he saw in detail, confirming her cranial settling and instability. He spent about two hours with us and sent us on our way with instructions to return to his office after a new CT and visits with two specialists were completed.

At this point, he had still not made a final decision about the best course of treatment or whether to use the halo.

He exchanged phone numbers with Mackenzie and told her to call him if she had any questions and to find out when to return to his office. If you have been to many doctors, you know this is not the usual way of doing things. We are very thankful for his kindness.

Mackenzie then had an appointment with the neuro-otologist in Dr. Henderson’s practice. He took a brief history from us and then suggested some extensive testing be done on our return visit to assess the nature of Mackenzie’s dizziness.

After our appointment, we went back to the hotel for a while; Mackenzie took a nap while I caught up on some phone calls. Dr. Francomano met us for dinner later and we had a wonderful time catching up with her. What a blessing!

Tuesday, June 16
This day was a little less hectic. Mackenzie had her CT done at 4:00 p.m, and then we went out in search for an early dinner.

Mackenzie and Dr. Henderson spoke by telephone several times and it was decided we would go to his office Wednesday after lunch.

Wednesday, June 17
Our day started early with an 8:00 a.m. appointment with a neuro-ophthalmologist down the hall from Dr. Henderson’s office. We had some time to kill after this so we explored the town a little before we returned to Dr. Henderson’s office after lunch.

Here is where things get interesting! As we were sitting in the lobby, a medical equipment rep came in the door pushing a cart upon which was a halo system. I must say our hearts sunk—we knew it was for Mackenzie, as there was no one else waiting to be seen. Dr. Henderson must have made the decision to use the halo based on the new info on the CT and the reports from the two specialists. Mackenzie was ready to submit to this mode of treatment, but this was not going to be easy.

A few minutes later, Dr. Henderson came to get us from the lobby. In his office, he asked Mackenzie how she felt about the halo idea; she told him she was ready but still had some concerns. He listened to every one of them and began sharing with us the options he felt were best: do nothing and treat symptoms with medication, keep doing physical therapy and see where things go, or try the halo for a month. Of course, the first two options have already been tried—the halo was the only logical choice.

As we were discussing these things, an amazing thing happened . . . the secretary opened the door, apologized for interrupting, and told Dr. Henderson that Dr. Francomano was on the telephone. He took the call and put her on the speaker. She had not known we would be in his office at this time. She was calling about another patient she wanted to refer. The Lord arranged this phone call—it was not late, it was not early, it was right on time!

So, the two doctors along with Mackenzie discussed everything—Dr. Francomano talked to Dr. Henderson as if Mackenzie were her daughter. And, based on the evidence gathered previously and Mackenzie’s current symptoms, it was decided that the best first course of action would be to release her tethered cord and then give a trial of the halo while she is in the hospital recovering from the surgery. At that point, the determination would be made as to whether to proceed with the cervical fusion surgery to stabilize her head.

This was an unexpected but very welcome turn of events!

We had prayed, and we know you all were praying, for God to guide this new physician to the best treatment. He heard and He answered.

Now we are home, safe and sound. I received an e-mail this morning from Dr. Henderson’s assistant telling me to expect a phone call some time today giving us the particulars of her upcoming surgery. We will, of course, let you all know as soon as we hear.

Thank you for praying. I hope you can see God’s hand as clearly as we do.

We love you all,
Lisa & Mackenzie

New Medical Information!

Guess what! We finally have something to share! I never thought I would be so excited to share medical information about one of my children, but we feel like we are moving in the right direction again. I know you have all been praying, so what I am going to post is an answer to YOUR prayers.

After almost two months of waiting to hear something definite from the doctors in NY, we felt it was time to investigate other options. Mackenzie’s symptoms are not improving, and we know from the experience of others with this condition that there can be lasting effects if treatment is not obtained quickly.

So, our geneticist in Baltimore suggested Mackenzie see a neurosurgeon in Bethesda, MD with whom she works closely. I sent all of Mackenzie’s records and MRIs to him last week, he called me on Saturday, and we see him Monday, June 15th.

He did confirm all Mackenzie’s diagnoses by looking at her MRIs: Cranial settling, kinked brain stem, and retroflexed odontoid bone. He said there was evidence on her spinal cord of cranial instability. He also suggested most of her symptoms, including the chronic pain, are secondary to the compression of her brain stem.

He suggests that we not rush into fusion surgery, as it cannot be reversed once it is done. Instead, he would like Mackenzie to wear a halo vest (see picture below) for a month as a trial; if her neurological symptoms improve, then fusion would be the next step. Mackenzie wants you to know she is going to try to “negotiate” the time she will have to spend in the halo. There are also other concerns we have about this, but we will address those when we get there. If he feels the halo is the best immediate option and we agree, it will be applied in his office on Monday.

Mackenzie and I will fly to Bethesda on Sunday and return on Tuesday. She will be seen by a neuro-ophthalmologist, a neuro-otologist, and the neurosurgeon on Monday. The secretary arranging all this for us told us we were in for a long day and to bring snacks! She must be a mama!

We, of course, ask you to pray for us as we travel and for our conversations with the doctors. We ask you to pray also for our wisdom and discernment as we make these decisions. Pray specifically for Mackenzie’s comfort as she may be flying home with the halo.

We will write when we return. We know God has gone before us and will go with us on this trip!

Thank you for praying.

Love,
Lisa & Mackenzie

Wit's End Corner

Good morning, Friends.

There is no news to share regarding Mackenzie’s health, but I felt compelled to share something with you.

It seems that everywhere I turn, someone is suffering. Of course, I have always felt this way, but it was distant suffering: Suffering of people after terrorist attacks or tsunamis or hurricanes, the suffering I saw on the news. Things are different now. Perhaps God has opened my eyes to the pain of others as we walk through our own trial. Perhaps trouble is increasing, as Jesus talked about Matthew 24. Whatever the reason, I see suffering all around me—diseases, death of loved ones, divorce, depression, destructive behavior, etc. Even if the suffering is not on a large scale as judged by others, people are just discontent or at the end of their rope. If you find yourself there, at the end of your rope, would you take comfort in the fact that this is a good place to be—at the end of yourself? For this is the very place of peace if you will surrender your inadequacy to the One Who is more than adequate.

I read the poem below in Streams in the Desert on May 23rd. This was a significant day in the life of our family because May 23rd is the day Mackenzie should have graduated from high school. Most of the time, we are able to walk moment-by-moment through this trial, but that day the full force of the past year seemed to hit me. I truly found myself at wit’s end that morning. I sat on the back porch in the beautiful sunshine and told the Lord all about it. You know, He never turns His back to our sorrow, and He never ignores our pain. He listens and He understands. He comforts and He strengthens.

When I was finished talking to Him, I opened Streams in the Desert, and this is what I read:

Wit’s End Corner

Are you standing at "Wit's End Corner,"
Christian, with troubled brow?
Are you thinking of what is before you,
And all you are bearing now?
Does all the world seem against you,
And you in the battle alone?
Remember--at "Wit's End Corner,"
Is just where God's power is shown.

Are you standing at "Wit's End Corner,"
Blinded with wearying pain,
Feeling you cannot endure it,
You cannot bear the strain,
Bruised through the constant suffering,
Dizzy, and dazed, and numb?
Remember--at "Wit's End Corner,"
Is where Jesus comes to love.

Are you standing at "Wit's End Corner,"
Your work before you spread,
All lying begun, unfinished,
And pressing on heart and head,
Longing for strength to do it,
Stretching out trembling hands?
Remember--at "Wit's End Corner,"
The Burden-bearer stands.

Are you standing at "Wit's End Corner,"
Then you're just in the very spot
To learn the wondrous resources
Of Him who faileth not;
No doubt to a brighter pathway
Your footsteps will soon be moved,
But only at "Wit's End Corner"
Is the "God who is able" proved.
Antoinette Wilson

I pray that if you find yourself at Wit’s End Corner this morning, you will find hope and comfort in the One Who is able!

We love you all,
Lisa

The Long Sleepless Night is Over

Good morning!

I thought I would write to let you all know Mackenzie, Michael, and Mariana survived their all-nighter!

Mackenzie did have her EEG yesterday. Since Mackenzie seems to have a gift for explaining her medical procedures, I will let her give you the details later. I just wanted to let you know we will receive the results of this test at her follow up visit on June 10.

We still do not have any concrete information from NY. We are trusting the Lord for His timing. Seems His plan for us right now is to wait. . .

I was thinking about how we as humans HATE to wait. We turn times of waiting into times of worry or times of trying to figure out how to manipulate the outcome, somehow making what we are waiting for come more quickly. I don't think this is how we are supposed to wait.

A friend of ours, who is also waiting for her surgery in NY, sent me the following words from Chuck Swindoll:

The hand of God holds you firmly in His control.
The hand of God casts a shadow of the cross across your life.
Sit down at the foot of that cross and deliberately submit your soul to His mighty hand.
Accept His discipline.
Acknowledge His deliverance.
Ask for His discernment.
Then be quiet. Be still. Wait.
And move over so I can sit beside you.
I'm waiting, too.
It does not depend on the man who wills or the man who runs, but on God who has mercy. Romans 9:16

So, for now, we will try to be quiet and still and wait. Thanks for waiting with us!

Love,
Lisa

All-Nighter

Hello everyone! Tomorrow is the EEG so I am not allowed to sleep for 24 hours straight! I was sharing this detail with our friend, Mariana, who offered to come over and pull an all-nighter with me! So Mariana, Michael (my brother), and I are planning on no sleep tonight! We are filling ourselves with junk food, playing games, and watching movies! We were talking in Grandma's kitchen and eating cookies... Mariana and I got a hold of some black pens and gave Michael a makeover!

I hope you all have a great night and get a lot of sleep! Thanks for all the prayers! The specific prayers for Thursday are that the EEG will show what needs to be shown!

Goodnight with love,

Mackenzie

Yum.... Barium!!!

Just a quick note to tell you how the modified barium swallow test went today: It was delicious... Just kidding! When we were taken to the room, I saw a woman preparing "food." It looked like she was squirting toothpaste in it! There were a few other people in the room that helped her, and they were all very nice. They seated me in the machine and pulled the x-ray machine by my side. Then a speech pathologist fed me the "foods" of various consistencies while someone took the x-rays. I was "fed" barium mixed with water (by a spoon, straw, and cup), barium mixed into butterscotch pudding, barium on top of fruit, barium on a cookie, and then a last sip of barium in water. Sounds delicious, doesn't it? The pudding was extremely gross and had a difficult time going down. It felt like swallowing glue! In the report it says there was "retrograde flow noted with pureed solids (pudding)." Other than that, it was not too bad! It was pretty disgusting tasting, but it didn't last long.

This was taken while swallowing liquid barium:

This was the "retrograde flow" of the pudding:

Next thing on the schedule is a phone conference with Dr. Bolognese. We are still unsure of when this will be, but it should be either tomorrow or Friday. We will let you know as soon as we hear anything. Yesterday, mom got a call from the surgery scheduler who reassured us that I had not been forgotten and that she would call at the beginning of next week to set a date! Yay!

Thank you again for all of your comments, support, and prayers!

Mackenzie and the Mathis family

News from New York

Good morning!

We apologize for our delay in posting, but there really was no reliable news to share until now.

Next week, we are scheduled to have a phone consult with Dr. Bolognese, the neurosurgeon in New York. He is reviewing all of Mackenzie’s information, her new upright MRI, and her symptom list. From that review, he will formulate a treatment plan and explain it to us next week.

She is having some new symptoms, for which she will have further testing done here in Spartanburg. I am going to give you the dates because we ask you to pray—pray especially that these tests will reveal any abnormalities that are causing her symptoms. Here are the dates and tests:

Wednesday, May 20th—Modified barium swallow to assess her swallowing function. Over the last month or so, she has become unable to swallow pills.

Thursday, May 28th—EEG—this is a two hour test to check for seizure activity. The neurologist feels she is having what are called absence seizures, which are episodes where she stops and stares. It is as if she just “checks out” for a few seconds at a time.

Both the swallowing issues and seizure activity are common in people with the conditions Mackenzie has. Evaluating them by testing will be helpful as the doctors refine her treatment plan.

I must tell you these weeks of waiting have been long, but we do trust there is a good purpose for the wait. We want to ask the Lord to tell us His purpose—Why did we have to wait, Lord? What did You accomplish during this month, Lord?

I read this week in When God Weeps by Joni Eareckson Tada that when we ask, “Why?”, we probably really don’t want the answer. Would it help us if God told us, “Well, this person’s faith was strengthened, Mackenzie needed these new tests first, your e-mail to so-and-so was necessary, etc.? Joni proposes all we really want when we ask, “Why?”, is for God to scoop us up and tell us, “It’s going to be okay! I’ve got you!”

Let me tell you, He has told us that over and over—“It’s going to be okay!” We don’t know how, we don’t know when, we don’t know what, but we do know God is in control.

Thank you for checking this blog faithfully. Thank you for your words of kindness and support. Thank you most of all for praying.

We will post again after the tests and phone call next week.

Love,
The Mathis Family

Still waiting . . . on the Lord

Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning; great is Your faithfulness. I say to myself, "The Lord is my portion; therefore I will wait for Him." The Lord is good to those whose hope is in Him, to the one who seeks Him; it is good to wait quietly for the salvation of the Lord. Lamentations 3:21-26

I wanted to send a quick update to let you all know we have not heard anything from NY regarding a new surgery date.

I know you are all praying and wondering--so are we! We are thankful to know, however, that we are waiting on the Lord, not on surgeons. And in the waiting, He has shown us much grace and peace.

Mackenzie continues to go to school a few hours every day, and we also still go to physical therapy, although they are now just working on pain management rather than strengthening exercises.

Thank you all for praying. We will let you know as soon as we hear anything!

Love,
The Mathis Family

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

My Pink Chair

I finally got my own wheelchair! I have been able to use a friend's for a while, but it was time to get my own. I was strangely excited to get it! I have come a long way from October, when I would not even say the word wheelchair, to now, when I was actually excited to get my own! I guess it helps that it is PINK! I must say, it is pretty cool, or at least as cool as a wheelchair can get! I wanted all of you to see it so I have attached the pictures below. What you can't see in the pictures, is that the wheels actually light up when they roll!

Love,
Mackenzie

Home from Charleston

The heavens declare the glory of God; the skies proclaim the work of His hands. Day after day they pour forth speech; night after night they display knowledge. There is no speech or language where their voice is not heard. Their voice goes out into all the earth, their words to the ends of the world. In the heavens He has pitched a tent for the sun, which is like a bridegroom coming forth from his pavilion, like a champion rejoicing to run his course. It rises at one end of the heavens and makes its circuit to the other; nothing is hidden from its heat. Psalm 19:1-6

This picture was taken on Monday evening on Seabrook Island near Charleston. Is it not testimony to the truth contained in Psalm 19? Every single day since God spoke the sun into existence and created morning and evening, the sun has risen and set on schedule. Even the heavens declare His faithfulness!

Our trip to Charleston was more evidence! I told you we were staying in the home of a friend; it proved to be more of a sanctuary than a home. Mackenzie rested well there, and it was a blessing to spend time outdoors in God’s beautiful creation together.

You know, we went to Charleston because of Mackenzie’s medical appointments on Tuesday, but it seems that Monday God had some appointments scheduled for us too.

First, we had lunch with a new friend of ours who has the same medical conditions as Mackenzie. That, in and of itself, was an encouragement to Mackenzie, but more than having a sympathetic ear over the medical issues, Mackenzie was blessed (as were Debbie and I) by the spiritual strength God has given this friend through her struggles. She truly radiates Jesus’ love and peace.

We headed back to Seabrook and decided to stop in the shops nearby. Mackenzie, Debbie, and I enjoyed just walking in and out of the stores, not having to hurry. We came across an art gallery; in the doorway was the most beautiful yellow lab I have ever seen. He is known as Ben, Charleston’s famous gallery dog! Of course, we were drawn inside, and ended up having a wonderful conversation with the owner of the gallery, the artist’s husband. We were encouraged by their journey of faith and the ways God is using his wife’s talent to bring glory to the Creator!

We ambled around the shops a little longer, and Mackenzie spotted a Marble Slab. Of course we went inside, and as we walked to get in line, a baby caught Debbie’s eye. She spoke to the little boy and we made our way to the counter. There was a problem though—not only was there a baby at that table, there was a three year old little girl. We overheard her say sweetly to her parents, “She did not speak to me.” Isn’t that pitiful? Needless to say, we walked back to their table. It did not take long for us to find out that this family was in Charleston to visit MUSC also. The father, Clay, has cancer and has been undergoing treatment there. The little girl, Teagan, chimed in at one point and said, “But God is always with us!” Amen!

I wonder if we miss appointments like these at home because we are too busy?

Well, we were in Charleston for medical appointments. Mackenzie had the MRAs first and then the ophthalmology appointment. The radiologist has not read the imaging studies yet, but the ophthalmology exam was completely normal. We are praising the Lord for this and the fact that we do not need a follow up appointment for two years.

I will update again after we receive the results of her MRAs . We are praying they are as normal as the eye exam.

Thank you all for carrying us before the Throne of Grace. We have been the recipients of much grace and mercy, and the amazing truth is that there is an inexhaustible supply of both!

May God bless you and your family,
Lisa & Mackenzie

Charleston . . . Here we come!

Just a quick update to let you know Mackenzie and I, along with our dear friend Debbie, will be headed to the Medical University of South Carolina in Charleston early next week.

Mackenzie has an appointment with the ophthalmologist for a baseline eye exam and is also scheduled to have the specialized radiological testing to rule out aneurysms. We expect these appointments to be uneventful, and could there be a nicer place to spend a couple of days? Another friend has even opened her home to us while we are there. God provides exactly what we need when we need it!

We will update when we return. We just ask you to pray for our safety as we travel and that any abnormalities would be revealed on these tests. As you know, Mackenzie has had many “normal” tests when we knew something just was not right.

Thank you for praying for our family!

Love,
Lisa & Mackenzie

Finger Splints!!!

I did not sleep well last night and didn't even fall asleep until 4:30. I was planning to go to school, but I didn't get up until 12! As I was getting ready, my mom came in my room and asked, "Do you want to go get your splints today?" I was so suprised and excited! I have been praying that we would get them by Friday, but I wasn't expecting to! God just blessed me, once again!

They actually help a lot! It amazes me how they stop my joints from hyperextending! I am switching them around to different fingers to do different tasks. It will take a while to get used to, but I love them!

In this picture, I put them on so you could see what they look like separately and combined together!

This is what they look like from the back!

Thank you for praying for my splints!

Love,

Mackenzie

New Appointments and Surgery

Hey! Sorry that it has been so long since I posted! It has been pretty crazy here! I have had several appointments since the last post.

We met with my ENT for the sleep study results, which came back abnormally normal! He told us that 94% of people who have a sleep study done have some form of apnea, and I didn't! The fact that it came back normal, made me abnormal... Of course!

Later that day, I had PT. I was doing really well and improving, so we kept going for longer than we should have. The next day was pretty bad! I haven't been in that much pain in a long time! To add to it, my heart rate was REALLY high, even for me! My resting heart rate stayed around 120 bpm and got up to 180 bpm! It went down over the next few days, and my pain leveled back out to my "normal" pain level. I went back to PT 2 days later, and we just took it easy.

Last Saturday, I went with my mom and 2 of our friends to find my prom dress. My heart rate was still pretty high so we took the chair. I didn't want to at first, but I was thankful that I did. We searched all over the mall and had no luck! On our way out I suggested we try one more store before we left. We were all praying that we would find something I loved, and that it was inexpensive! When we got to it, we saw some gorgeous dresses that were WAY too expensive, but we decided to keep looking around. As we walked farther down the wall, we saw that almost all of the dresses were 70% off! I probably tried on 10 different dresses in there that were all originally around $400! I finally found one that fit perfectly and was just what I was looking for! We were all so excited!!! God really blessed us! It was a wonderful day with some wonderful friends!

Tuesday I went to the Hand Center to try the Silver Ring Splints again... This time I was not going in there expecting them to fit, because I knew that my joints have become very swollen. And I was right! They didn't fit, but we resized them and she reordered them. I am hoping to get them in the next week or so! My fingers really need support!

I am still doing PT and my core muscles are getting stronger. We are noticing that my joints, especially my knees, tire out really quickly! My knees are continuing to get looser, which makes it more difficult and painful to walk. I am probably going to have to look into getting knee braces, just for the days when I do a lot, or when they are looser.

This week I have a cardiologist appointment. We will go over the results of the event heart monitor and catch him up on what has been going on since my last visit. We will let you know how that goes!

Here are some of the scans from NY. I labeled the abnormalities causing some of my symptoms. I hope they help you better understand what we are talking about!

We finally were able to schedule the appointments ordered by Dr. Francomano! It was a lot of back and forth with rewriting the order, but we have an appointment at MUSC on March 24! The people in the imaging department were so helpful and were even able to fit my appointments all in one day! I am very excited to go there and see the results of the scans and ophthalmologist appointment!

Surgery... I am still not sure what I think about it... I don't want to do it, but I know I have to! I just keep praying that this is the right thing to do, and God shows me just about everyday that I need to do this! I will continue to pray that my fears won't get in the way of me doing God's will! It is very difficult, but I am just trusting that He knows what He is doing and that there IS purpose to my suffering! I have already seen some purpose to it, and I know that there is more to come!

Thank you for all your support and prayers! My family and I can never thank you enough!

Love,
Mackenzie