Surgery Scheduled

Micah 7:7—But as for me, I watch in hope for the Lord, I wait for God my Savior; my God will hear me.

Look at the phrases in that verse—I watch and wait! The Lord hears! This has certainly been our experience over these last few months. Seems the Lord reveals to us a new need and then delights to lead us in His way, showing us His goodness around every corner. That is the wonderful thing about God—you cannot separate His goodness from His sovereignty, His love from His justice, or His mercy from His holiness. He just is all of those things (and much more) ALL the time!

So let me tell you what He has done for us now: You know from the last post that Mackenzie’s doctor in Baltimore wants her to go ahead and have the tethered cord surgery in New York. Mackenzie’s only request was that it be scheduled after prom, which is April 18th. Her surgery date is April 21st.

We will fly to NY on April 19th; she will have pre-surgical testing and another MRI on the 20th, and then she will have surgery on the 21st. She will be in the hospital for 3-5 days. We are required to stay in NY for two days after discharge to make sure there are no complications before we fly home, possibly on April 28th.

On one hand, April 21st seems so far away, but realistically we know how quickly it will come. There are several tests she has to have done prior to that—ophthalmology exam and MRAs, which are being scheduled at the Medical University of South Carolina, possibly in mid-March. She will have to have cardiology clearance prior to surgery (appointment scheduled for March 10th) and various blood tests.

She also continues to have physical therapy twice weekly. They have been working on her core muscles, which will be beneficial as she recovers from surgery.

Mackenzie is still experiencing the tachycardia (fast heart rate), fatigue, headache, and joint pain. And although we are eager to have this surgery behind us in hopes it will alleviate some of her symptoms or halt the progression of symptoms, it is a serious surgery and we do ask for your continued prayers.

Mackenzie will post in the next day or two because she wants you all to know how SHE is feeling about this.

Thank you all so much for praying.

We love you,
The Mathis Family

Back from Baltimore!

Good morning! Although we were only gone two days, it sure is good to be home!

I want to thank all of you for covering our trip with your prayers . . . God went before us and blessed us with awareness of His presence every step of the way. He even sent a dear friend with us to hold our hands.

The doctor's visit went very well. The doctor we saw is the head of adult genetics at Greater Baltimore Medical Center. She only sees two patients per day--Mackenzie was one of them yesterday. When we first arrived, we gave our life history (all the way back to Mackenzie's grandparents' siblings) and also Mackenzie's medical history to a nurse practitioner. Then we saw the doctor. She spent no less than three hours with us--asking more questions, examining Mackenzie, leaving the room at one point to research something, and then answering all of our many questions.

Dr. Francomano has an 18 year old daughter herself and was very compassionate. She communicated with a mother's heart and sincerely expressed her desire to help Mackenzie. We have been very blessed along this road with caring physicians, and we add this one to the list!

We received so much information, but I will just give you all the bottom line--
First, Mackenzie needs to have an MRA (specialized MRI of the blood vessels) of her entire body. Dr. Francomano would like her to have this done at a university hospital, and we discussed Duke or MUSC. I am going to work on that today (just in case you needed something else to pray about)! :)

She has also ordered warm water therapy for Mackenzie. She wants Mackenzie to build up her muscle tone, but Mackenzie is unable to participate in traditional exercise. Dr. F hopes the water therapy will be less stressful on her body and build up her muscles.

Also, since most of us (yes, you too) are magnesium deficient because of the way food is grown in our country and since magnesium deficiency is particularly harmful for someone with a connective tissue disorder, she has ordered that Mackenzie soak in Epsom salts three times a week--either in the tub or just her feet. Our bodies actually absorb the magnesium through our skin. (This "therapy" actually sounds wonderful, doesn't it?)

There are a few other things Dr. F suggested, including extra vitamin C, orthotics to help Mackenzie's very flat feet, and an ophthalmology visit while we are at Duke or MUSC for the MRA because connective tissue disorders can affect the eyes. We will follow up by phone with the doctor in 1-2 months, after the MRA has been completed, and then we will fly back to Baltimore for a one year follow up.

Dr. Francomano also confirmed the diagnoses of cranial instability and tethered spinal cord that were made in NY. She works closely with those physicians and will telephone them to share her findings. She is going to give them the OK from her standpoint for Mackenzie to have the tethered cord release. She feels many of her symptoms will be diminished or perhaps alleviated altogether with this procedure. She also feels she will eventually need the neck fusion to stabilize her head/neck. We don’t know exactly when the first surgery will take place, but Dr. Francomano felt it would be late Spring because the surgery schedule in NY is so full.

Again, as I look back to August of 2007 (when Mackenzie first developed symptoms), I am amazed at how quickly the Lord has brought us to the point of correct diagnosis and potential treatment. We have heard countless stories of patients like Mackenzie going years before finding treatment. We praise the Lord for His kindness and also understand this grace was not for us alone. There is a bigger plan here; we don’t know what it is yet, but we trust the One in whose hands we rest.

We want to remind you that we pray for you every day—I am sure there are many of you who follow this blog and pray for Mackenzie that we have never met, but God knows who you are! We pray you will be drawn closer to the Creator of the Universe Who loves you so much He shed His blood so you could talk to Him!

We love you all!
Lisa & Mackenzie

Busy week!

Good morning, friends. We are sorry it has been so long since our last update; we have had a busy, eventful week.

As you know from our last post, Mackenzie has developed some tachycardia for which she was given a new medication. Last Monday, January 26th, Mackenzie’s heart rate began fluctuating wildly. She developed some chest pain and shortness of breath, so we were advised to go to the emergency room. After several hours, some blood tests, EKGs, and a CT of the chest we were sent home to follow up with her cardiologist the next day.

Long story short, she ended up having a stress test, which showed, thankfully, that her heart itself is healthy and working properly. This again confirms that her brain stem compression is causing the problems with her heart rate.

The rest of our week included a trip to the ear, nose, and throat physician to set up a sleep study, which will be done on February 11th. This test is being done to check for sleep apnea and aspiration, which could account for her insomnia and repeated bouts of pneumonia. Our prayer for this test is that Mackenzie will actually sleep! I am sure for someone who does not sleep well normally, being connected to machines will not help!

Mackenzie is also continuing in physical therapy. The therapist who is working with her is very kind and gentle; he has good understanding of her conditions and is very careful to not overtax her body.

She has also started using a cervical traction device at home. It is quite a sight! She lays down on a flat surface, puts her head into the soft plastic traction device, and we pump it up to the point her head is lifted up off her neck. She is supposed to work her way up to using it 45 minutes at a time three times per day. The neurosurgeon in NY hopes that by trying these conservative measures she can avoid the difficult surgeries required to stabilize her head and neck and release the tethered spinal cord.

Of course, the underlying cause of all the structural problems is the Ehlers-Danlos Syndrome (EDS), the connective tissue disease Mackenzie has. We go visit Dr. Francomano in Baltimore (an expert in EDS) next Tuesday—how quickly February 10th has come! We are praying for safe travel and an informative visit. Dr. Francomano’s input will help the doctors in NY make decisions about further treatment.

Mackenzie has received such kind e-mails and cards from you. Thank you! It really lifts her spirits to read your encouraging words. Just knowing you are praying for her (for all of us) helps us walk this road.

Let me share something I read this morning from Jesus Calling, a devotional written by a missionary to Japanese people living in Australia. She writes it in first person as if Jesus were speaking directly to you!

I am with you and for you. You face nothing alone—nothing! When you feel anxious, know that you are focusing on the visible world and leaving Me out of the picture. The remedy is simple: Fix your eyes not on what is seen but on what is unseen. Verbalize your trust in Me, the Living One who sees you always. I will get you safely through this day and all your days. But you can find Me only in the present. Each day is a precious gift from My Father. How ridiculous to grasp for future gifts when today’s is set before you! Receive today’s gift gratefully, unwrapping it tenderly and delving into its depths. As you savor this gift, you find Me. (Romans 8:32; 2 Corinthians 4:18; Genesis 16:13)

We understand as never before that each day is a gift from the Lord. We are to walk in it holding His hand, trusting Him to provide all that is needed to see us through to the end of this day. What He has provided most importantly is a sense of His presence guiding us every step of the way.

Thank you for praying—did you know we are praying for you too? We thank God for you and ask God to bless you and your family with awareness of His goodness in your own lives!

We love you all!
Lisa & Mackenzie