Summary of Our New York Trip

Good morning, friends. I (Lisa) am going to post for Mackenzie this morning so I can give you a summary of what we learned on our journey to New York.

I know you are all eager to know the medical details of our trip, so I will try to briefly summarize the information we gained through these doctors’ visits and procedures.

As you may already know, Mackenzie has a connective tissue disorder that may be Ehlers-Danlos Syndrome. This means her connective tissues do not function as they should and cannot hold her skeleton in place properly. This, of course, affects all parts of her body, including her head and neck. The doctors here confirmed by radiological studies and the invasive cervical traction that Mackenzie does indeed have craniocervical instability. (In her words, she is a “bobble head.”) The effect of this on her body is that her head is settling down on her neck pressing on her cerebellum and brain stem. This can cause many neurological problems, which she has experienced.

Secondly, they feel she has a tethered spinal cord (another diagnosis common to people who have connective tissue disease). The spinal cord is connected to the bottom of the spine by a cord of connective tissue called the filum termale; if this is not functioning properly, the spinal cord can be pulled downward, again causing neurological symptoms and pain. The good news is surgery can be performed to correct both of these issues. Although the recovery from these operations is a long process, most patients’ severe symptoms have been relieved.

The surgeons here are experts in this surgery and have performed over 2,000 in the last six years. We are confident in their ability and knowledge.

Now, those of you who know Mackenzie well know she does not do things in conventional ways—even the simplest tasks take a Mackenzie spin when she does them. This medical issue is no different. Dr. Milhorat, the founder of The Chiari Institute, is concerned with the sudden onset of the pain she is having. He says the structural and brain stem issues have to take a backseat right now to the more troublesome issue of her rapid decline.

He has been in contact with a geneticist in Baltimore who is the expert in connective tissue disorders. They put their heads together over the phone yesterday and concluded something has set off Mackenzie’s immune system, causing an attack on her connective tissues. They are going to try to suppress this attack with medicine before making a decision about further treatment. Our prayer now is to get an earlier appointment than the one we already have in February, and that the medicine will halt and reverse the attack on Mackenzie's connective tissues.

Let me give honor and glory to the Lord for hearing and answering our prayers and yours. He has been faithful to keep us safe, to surround us with kind people, to bring new friends into our lives, and to guide us further in our quest to find help for Mackenzie’s health. Most of all, however, He has been faithful at every turn to bless us with His presence and peace. One of the sweetest ways He did this was to send a male nurse named EMMANUEL to take Mackenzie to her procedure yesterday. I just had to smile (almost laugh) at how good the Lord is. I was able to walk Mackenzie only as far as the big metal doors to the OR hallway. I leaned down and told her to remember Emmanuel was with her! God is so good! He has also blessed us with all of you. How can I even begin to tell you how thankful we are that you are praying for our girl? There is nothing greater you could do for us than to carry our child before the Throne of Grace.

So, now you know what we know. We are about to leave for the airport. There is a winter storm bearing down on NY as we speak, so we are trusting the Lord to get us home today.
Thank you again for praying for us and for the practical things you have done for Mitchell, Michael, and Morgan while we were away.

We love you all!

Lisa, Meghan, and Mackenzie