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
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
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