Dear Lexi,
It has taken me a week to write this for you. Sometimes I just don’t have the right words. Honestly, I still don’t think I do. Processing everything and trying to look at our options from every point of view can be exhausting. I hope that when you are old enough to understand what is going on and what has gone on in the past with your body, that you don’t resent me for the treatment path we chose. Everything I decide to do is what I hope someone would do for me if I wasn’t capable of deciding. Believe me when I say, none of these choices comes easy for us.
That being said, we have scheduled your arm surgery for June 3, 2016. When we were looking at the options I had no idea how long or awful of a process it would be to give you the best possible results. Next Friday you have an MRI scheduled to get more accurate measurements and to finalize plans and timeline expectations. This whole process means that they have to put you under 3 times over the next 6ish months. Why are we going through with it if it seems so awful? Well, right now the bone is already dislocated, this is how to repair that. If we don’t, the bone differential can cause the arm to lose all ability to bend.
The first time you go under will be for the MRI. The second will be 6/3 for surgery. For surgery, the plan is to go in and insert pins into the shorter bone, break the bone, I’d assume that means cutting it but I forgot to ask how they do it, and then attaching a device on the outside that slowly spreads the bone over the course of a few months. If they were to just go in and lengthen the bone now, the stretching of the ligaments, muscles and vessels would be to great and would cause damage. The 3rd will be when they go back in to finish everything up and remove the pins. We were told to expect 6 months of you not being able to do much with your arm.
We were also told that because the doctors can’t guess what the future bone growth there will look like that we need to understand that there is a liklyhood (based on current bone growth patterns) that you will need a second surgery when you’re older. So, there it is. I swear that I hope with all my might that you don’t remember this when you’re grown. I don’t want to have to turn a dial daily, I don’t want to hurt you. The doctor assured me that if it was too painful for you that we could do the dial stretching in smaller increments multiple times a day rather than all at once, so that’s nice.
Anyways, I’m scared. I’m scared that this is going to be painful for you. I’m scared that you’ll remember the pain. I’m terrified that you will resent me for putting you through this. Please, always remember that I love you so much. I want the world for you. I hope one day these constant issues will be a distant memory, a thing of the past. If they’re not, if things continue like this, I’ll continue to be here for you. To advocate for your best interest and to hold your hand and love you through it all.
Love you baby girl. To the moon and back, infinity times infinity.
XOXO,
Mom
Dear Lexi 