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