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.
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
3 comments:
Wow Mckenzie- what a way to be an angel on earth!!! Seriously I will be praying for you,I am really glad you have finally gotten some direction. Eph 3:20- Love ya- Cathy Z
You are amazing Mackenzie! I am praying for peace for you and that you will be able to see a glimpse of the light at the end of the tunnel! God has big plans for you!
Hi Mackenzie! You are such an inspiration! You and your family are in my prayers always. We love you!
Cousin Lisa
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