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