Cardiology Visit and Physical Therapy

Good morning! What a beautiful day it is here in South Carolina!

We wanted to give you a quick update on Mackenzie’s cardiology visit Monday. The Lord provided a very knowledgeable, kind doctor who was familiar with the conditions with which Mackenzie has been diagnosed.

He explained the reason for her rapid heart rate—blood vessels too weak to pump the blood back up upon standing and the brain stem compression compromising the autonomic nervous system. He has given her an “event monitor” to wear for 30 days; any time she feels her heart racing, she presses a button, and the machine (about the size of a beeper) records her heart beat. At the end of the day, she calls the number on the machine, holds it up to the mouthpiece of the phone, and transmits her data. Very cool! This will give the doctor long term information to evaluate.

He also put her on a medicine that will, over time, increase her blood volume, which should help her heart maintain her blood pressure without having to beat so fast. She took her first dose last night, and it will probably take a couple of weeks for her to experience the full effects of the medication. Please pray it will be effective without side effects.

Getting the tachycardia under control should make her feel much better, increasing her energy level and decreasing her lightheadedness. We are so thankful for God’s clear direction and provision of this doctor. God has truly gone before us and guides us one step at a time.

The next appointment on our calendar is physical therapy at 2:00 tomorrow afternoon. This is Mackenzie’s first visit, so I am sure we will sit down and talk with the therapist before any actual exercise is done. Please pray we will communicate clearly with the therapist and for him to have understanding of the connective tissue issues and neck instability. In patients with these conditions, there is a fine line between exercise that helps and exercise that goes too far and can actually set them back for days, even weeks.

Thank you for praying. James 5:16 says that the prayer of the righteous man (I am sure this includes righteous women, too) is powerful and effective! The Lord has proven this scripture to be true in our lives time and time again. It is our prayer that your faith is strengthened as you walk this road with us and see that your prayers are indeed powerful and effective!

We love you all!

Lisa & Mackenzie

Rest and Relocation

Sorry that it has been a while since I posted last! I have come down with bronchitis or early pneumonia and have spent a LONG time resting! I am hoping to go to school tomorrow, but it will depend on how I feel in the morning.

The doctors in NY are concerned with how many times I have gotten pneumonia and have suggested that I go to a pulmonologist. We are not sure who I am going to yet, but we are sure that God will provide one for us as He has been so faithful to provide the other doctors!

My heart is still beating too fast and working really hard to keep my blood pressure up. I am going to the cardiologist Monday, so hopefully he can figure out some medicine to keep it under control. In researching POTS, we found out that it is aggravated by many things, including going up stairs. Of course, my bedroom was upstairs! We figured that I would eventually have to move downstairs, but I hoped that it wouldn't be this soon. I am now settled into Morgan's old room. We have everything put away, and are finishing decorating it!

Because I was so sick Tuesday, I was unable to go to physical therapy. We rescheduled for next Thursday. My finger splints should also be in next week, which is VERY exciting! I'll post a picture of them when I get them, because I know that most people have never heard of them!

Thank you for all of your support and prayers! I am very grateful to be surrounded by such wonderful, caring people!

Love,
Mackenzie

Fearfully and Wonderfully Made

Psalm 139:13-14
For You created my inmost being; You knit me together in my mother’s womb.
I praise You because I am fearfully and wonderfully made;
Your works are wonderful, I know that full well. (NIV)

I have never been more convinced of the validity of those words written by David thousands of years ago. As I have researched the medical conditions with which Mackenzie has been diagnosed, I have learned how fearfully and wonderfully made we are.

This week, as a result of the tilt table test done on Monday, Mackenzie was given another diagnostic label—postural orthostatic tachycardia syndrome or POTS for short. All this means is that her body does not tolerate standing up too well. Her heart, in an effort to maintain her blood pressure and pump blood to her brain, beats too fast when standing. There are two factors contributing to this in Mackenzie’s body: first, her blood vessels may be weak and unable to function properly due to the Ehlers-Danlos, and/or second, the brain stem, which controls the autonomic nervous system (heart rate, digestion, respiration, etc.), is compromised due to the cranial settling and possible tethered cord. It all works together because we are fearfully and wonderfully made! When one system is dysfunctional, other systems are affected.

As I was thinking of how intricately connected our bodies are and how well designed by our Creator, I was reminded that as believers in Jesus Christ we are all part of a Body—all connected, no independent systems, dependent upon one other to accomplish Christ’s purposes in the world. (I Corinthians 12:12-30)

God has shown us over and over again during this part of our journey that He uses His Body in our lives for comfort, encouragement, and sometimes medical help. Listen to this . . . a few days before Meghan, Mackenzie, and I left for New York one of the other mothers from Oakbrook had an administrator of the school give me her number. The Moms-In-Touch group had been praying for Mackenzie, and she just could not get her off her mind. Her husband, a local cardiologist, told her to call and offer their prayers and any assistance they could give.

We finally talked; I was greatly encouraged by her kind words, but honestly, I hung up the phone and thanked the Lord that WE DID NOT NEED A CARDIOLOGIST! Well, of course, it turns out we do! God provided in advance . . . again! And oddly enough, this doctor specializes in electrophysiology (the kind of cardiologist Mackenzie needs) and has two other patients with Ehlers-Danlos. We have an appointment with him on January 19th! The Body of Christ also is fearfully and wonderfully put together to accomplish His purposes! In fact, we were put on the right track to a correct diagnosis by God using His Body—our brothers and sisters—to point us in the right direction. He is so good and so faithful!

We are just amazed by His grace, and we pray that you are as well. Mackenzie’s story is just a small story, a small thread in the tapestry of God’s grace. We pray that this week God would show all of you how He is the Master Weaver in your lives as well; He is fearfully and wonderfully weaving “His story” strand by strand, and it is beautiful!

We love you all, new friends and old!
Lisa & Mackenzie

New Appointments

This post is a joint effort--Mackenzie & Mom (Lisa)! We both had some things to tell you, so we thought we would do it together.

I, Mackenzie, will go first!

Well, I did not go to school today, because the tilt table wore me out! They only did it for 10 minutes instead of 30, because my heart rate jumped from 80 to 124! As soon as they stood me up, I got really dizzy and lightheaded! By the time I had been up for 7 minutes, I felt like I was going to blackout! I came home and slept for almost 5 hours! I feel a little better now... I think my heart having to work so hard just took too much energy! I have two appointments tomorrow... The first is at a hand therapist who can fit me for the finger splints, so I am VERY excited to go there! Then, I have to go get my neck brace adjusted. I hate wearing it right now, because it pushes my jaw out of joint, which makes me lightheaded and causes my face to go numb. These doctors’ appointments will be "fun" appointments, so I'm not worried!

Guess what! I get to go to Baltimore ten days earlier than expected! God heard and answered our prayers. Dr. Francomano's office called yesterday to tell us they had a cancellation. So, we are going on February 10th at 9 am. We are so thankful! I am SO thankful for being able to get all of these appointments so soon! God has definitely blessed me!

Mom wants to share some things, so for now I will say good-bye! Thank you again for praying for me and for my family. God has truly shown us how good He is!
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Hi, friends! Mackenzie has filled you in on her appointments, but I had one thing to share with you.

A couple of years ago, a dear friend of mine suggested I start reading a devotional called Streams in the Desert. It has become like a treasured friend to me, especially lately! The passage for December 27th is about the strength we gain in suffering.

His soul entered into iron. (Ps. 105:18)

Turn that about and render it in our language, and it reads thus, "Iron entered his soul." Is there not a truth in this? That sorrow and privation, the yoke borne in the youth, the soul's enforced restraint, are all conducive to an iron tenacity and strength of purpose, and endurance or fortitude, which are the indispensable foundation and framework of a noble character. Do not flinch from suffering; bear it silently, patiently, resignedly; and be sure that it is God's way of infusing iron into your spiritual life. The world wants iron dukes, iron battalions, iron sinews, and thews of steel. God wants iron saints; and since there is no way of imparting iron to the moral nature but by letting people suffer, He lets them suffer.

Are the best years of your life slipping away in enforced monotony? Are you beset by opposition, misunderstanding, and scorn, as the thick undergrowth besets the passage of the woodsman pioneer? Then take heart; the time is not wasted; God is only putting you through the iron regimen. The iron crown of suffering precedes the golden crown of glory. And iron is entering into your soul to make it strong and brave. F. B. Meyer

The same friend who suggested Streams in the Desert recently wrote, "In God's economy, hurt is never wasted!" Think about that . . . not one ache, not one tear, not one disappointment is wasted in the hands of Sovereign God who promises to work all things together for the good of those who love Him, who have been called according to His purpose. (Romans 8:28)

It is our prayer that God would use this time in our lives and the suffering you face to mold us into "iron saints,” full of His grace and strength, to carry out His good purpose for His glory!

Thank you again for praying. We love you all, but as much as we love you, God loves you more!

Lisa & Mackenzie

Holidays are Over! :'(

I am sorry it has been so long since my last post! I hope you all had a wonderful Christmas and New Year! It has been great to be able to relax for so long, but I am very excited to get back to school! I have really missed all of my friends that I haven't been able to see over break!

Not much has happened since the last post, except we have had a lot of appointments and have set up even more! I was at the orthodontist three days in a row this week! My teeth have moved so much since I had my braces removed that I had to get invisalign (clear plastic braces) type retainers, just in case I need more radiological testing.

I also had an appointment with my "home base" neurologist to inform him of what the doctors at TCI said. He was very interested and actually told us that we were teaching him a lot of new things! He also gave me a prescription for some splints for my fingers, which should stop them from slipping in and out of joint so easily! He seemed just as excited as I am to get them, because he had never heard of them!

He also set up an appointment for me to have a tilt table test done Tuesday at 8 am. This test will evaluate how well my body regulates my heart rate with changes in position, such as from lying flat to standing. Please pray for this test because I have heard that I am not going to feel very well after it! I am also scheduled for another test on January 12 that will help the doctors determine whether my spinal cord is tethered.

The doctors in NY have also ordered physical therapy to strengthen my core muscles. This is in an effort to stabilize my joints by strengthening the muscles around them. I am eager to start this soon, as I have lost a lot of the muscle tone I had from dance!

My joints still seem to be getting looser and the doctors don't know why. All of the joints in my fingers are dislocating more often, which is painful, so I am getting silver ring splints. I had been dreading getting them, but now I am VERY excited about getting them! I really think they will help, especially while I am writing, typing, and eating. I am also having some more difficulty walking and climbing stairs, because my ankles, knees, and hips are constantly sliding out of place. I just have to walk slower and concentrate on trying to hold them in joint as much as possible.

I am learning that I cannot do as much as I would like to, but it is okay! I am just readjusting my life, but still enjoying what I can do! This experience has made me very thankful for the many things that I AM able to do and makes the time spent with the ones I love even more special! I have had a wonderful break spending time with my family and friends and getting to know some amazing people! Despite my pain and sickness, it has been one of the best Christmas breaks that I have ever had!

Thank you for being so supportive and helpful to me and my family! I sincerely appreciate all of your prayers, emails and kind messages! It is very encouraging to know that so many of you are praying for me!

Love,
Mackenzie