Super Z update
It’s been a long time since I have posted. It’s been an amazing year though! My facebook timeline popped up the other day and said it has been 2 years since Zayne had his last brain surgery. Pictures of him in a wheelchair and seeing his paralysis have flooded my phone. I can’t help but look at those pictures and be so amazed at how far he’s come!! I read a post that he had taken 5 steps in the hospital and I look at him now running around and doing great!! The past couple MRI’s have come back showing this tumor to be getting smaller and smaller!! And on top of that we just went to his Neuro-opthamologist on Monday and got the most amazing report. And here how that goes…
Zayne and I took off for Grand Rapids blaring our music as always! The drive was quick and we were both excited about this visit. I had been hearing from the people that work with Zayne that they felt his eye sight was improving, so I was excited to see the results! He hopped up in the chair and waited for the exam to begin. The assistant took him through the same series of tests we’ve been through so many times and wrote down his numbers in the computer. The Doctor came in and tested him as well. He asked Zayne how he felt his vision was. Zayne, so matter of factly said, “It’s better.” He said with a confident nod. The doctor said “Why do you think that?” Zayne looked at him and plainly said “Uh….because I can see better.” Saying it as though the doctor didn’t hear him the first time. I had to put my hand over my mouth and stifle a laugh. Zayne just sat there a little confused. The doctor turned around and looked at me and said “Well, he is absolutely right. His color has improved in his right eye (which is the one that sees 400). The reason we test color every time is because it’s directly related to the optic nerve. So because he is seeing color in his eye that has struggled the most, tells me there has been a release in pressure. Meaning the tumor isn’t as tight around that optic nerve. I’m really looking forward to his upcoming MRI.” I sat there still processing what he said. He basically said the tumor isn’t as strong as it was and it’s not strangling my kids optic nerve…the nerve that allows him to see. I blinked a couple times and talked more with the doctor. We said our goodbyes and headed out the door and by the time we got to the car I was jumping out of my skin. I was so excited I couldn’t stand it! We made so many phone calls! I looked over at Zayne and said “Do you know what this means buddy?” He smiled and shook his head “Yea…it means I can see better!” I laughed and said “Yea and it means this tumor is shrinking!” He nodded his head and said “Yea… I know.” And he really did 🙂 That’s the crazy part, he knows what’s happening. He knows the tumor is going away and he is excited with us, but not surprised. He’s such an amazing kid! So smart, not only intelligent but just smart about life!!
And this Wednesday we got an MRI which he did without sedation!!!! He was so brave…going back to the MRI knowing I wouldn’t be with him and it would be the doctors and nurses talking to him. He is basically put in the MRI machine and a cage is put over his head…then it’s a normal MRI. But no one, as most of you know, is allowed in there with him. Everyone else is behind the window of glass. And for a kid that deals with anxiety because of his sight issues I was BEYOND proud that he opted to try it. He asked great questions before hand including whether the doctors would have to start all over if he changed his mind in the middle of it and wanted to go to sleep. He was just so calm. It was absolutely watching him transform in front of my eyes. The last MRI we were talking about it and he freaked out when I mentioned it on the day of. But Wednesday he seemed super nervous at first and then after he was finished asking all of his questions he seemed…good. In fact when I kissed him and said I would see him when he got out (I expected him to panic) he looked at me and said in his big man voice “Ok, Bye….Love ya” He came through with flying colors. And the results came back as well!! This tumor is shrinking bit by bit!! I’m just so excited that LIFE is changing for my boy!! Life is slowly taking steps toward allowing him to be a child. Not only is the tumor shrinking but we are also able to move to 4 month MRI’s. I know that is only 1 month longer than what they have been but that means 1 more month of getting to be a kid!!! I’m BEYOND happy for him to slowly but surely step out of this journey we have been on.
We are so thankful for this news!!! And couldn’t wait to share it with everyone!! As always thankyou for all your prayers and support!!
Super Z Family!!