When Tanner had his 1st birthday, we had been thru such a roller coaster that first year that everything was a blur. I was so excited to celebrate with him, but when the day came, I was consumed with how will he eat cake, he can't even hold his head up in his high chair and he was still crying all the time. I didn't know how to deal with the situation as it was so new to me. Since then, a lot has changed but a lot has emotionally stayed the same. Brian and I talk often about needing a new chair to feed him in as he gets bigger, turning our van into a wheelchair accessible van, having a ramp to get into our home, putting in some sort of elevator or lift, installing a lift from Tanner's bath into his bedroom, and how we will be able to afford all of this. But out of sight out of mind right? I can still carry Tanner now so let's not think about it yet. He's still in a stroller, so let's not think about it yet. Then his Occupational Therapist tells me to look into an organization that remodels rooms in your home and they are looking for families for 2017, so we should apply. I mentioned that we don't need a lift or anything yet. I'm still holding out hope that Tanner will walk one day. She looked at me and said, "Courtney, you need to look into it!" It was my first kind of "real" moment that Tanner is not 1 year old anymore. He's about to be 3, he weighs 38 pounds, he's 3'3" tall and he's nowhere near walking. This was what I needed to hear, but it was not a fun moment. I filled out the paperwork and dropped a form off for his doctor to fill out and when I picked it up...another "real" moment. The form asked for age of child and developmental age of the child. She wrote "4-6 month old infant" as developmental age. This sent me into instant tears. I describe Tanner to others all the time as an infant in a toddler body, but to have someone else say it and agree with you was heartbreaking and very real. To see the words "infant" written about my boy who's about to be 3 was very hard, but that's reality. I never realized that when I talk about Tanner, I'm in a state of raising awareness, of teaching others or defending him. I'm not in a vulnerable state of mind.
In the efforts of moving forward, we are waiting to hopefully be approved for some sort of home makeover to better suit Tanner's needs and we have scheduled him for VNS surgery, November 8th. We have tried a ton of medications, including many different CBD oils. The CBD does amazing things to his personality and happiness, but nothing has touched his seizures. And they have been really bad and out of control for awhile now. VNS (Vagus Nerve Stimulation) is designed to prevent seizures by sending mild pulses of electrical energy to the brain, via the vagus nerve. A device, similar to a pacemaker, is installed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck. Like anything else with CDKL5 kids, this surgery works for some and does not work for others. At this point, we have to keep moving forward and trying everything we can. So as difficult as it was, during Tanners first year of life, for us to mourn the loss of the child we thought we were having, I find that I am still doing that today. Please keep Tanner in your thoughts and prayers as he goes into surgery on the 8th, because above all else, I'll happily keep my "infant" baby boy, in any size and age body, as long as he's here on earth with me.
In the efforts of moving forward, we are waiting to hopefully be approved for some sort of home makeover to better suit Tanner's needs and we have scheduled him for VNS surgery, November 8th. We have tried a ton of medications, including many different CBD oils. The CBD does amazing things to his personality and happiness, but nothing has touched his seizures. And they have been really bad and out of control for awhile now. VNS (Vagus Nerve Stimulation) is designed to prevent seizures by sending mild pulses of electrical energy to the brain, via the vagus nerve. A device, similar to a pacemaker, is installed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck. Like anything else with CDKL5 kids, this surgery works for some and does not work for others. At this point, we have to keep moving forward and trying everything we can. So as difficult as it was, during Tanners first year of life, for us to mourn the loss of the child we thought we were having, I find that I am still doing that today. Please keep Tanner in your thoughts and prayers as he goes into surgery on the 8th, because above all else, I'll happily keep my "infant" baby boy, in any size and age body, as long as he's here on earth with me.
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