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
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
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