Brinton and some thoughts weighing on my mind....

Christmas was wonderful, we were snowed in and spent several hours playing outside with the kids as the snow fell down. It certainly was magical. I love to document every little moment with lots of pictures and I'm sure in time I will share those with you but tonight there are many things going through my mind. I feel somewhat alone at this moment and sometimes this blog can be very cathartic for me.

As many of those who read this blog know (as most all of you are personal friends and/or family) my 8 year old son Brinton was born with a lymphatic malformation known as Cystic Hygroma and has had many corrective surgeries for various issues stemming from that. If you need a refresher you can read a blog I wrote about his story HERE

For some time now Brinton has had this weird reoccurring bruising on his chin near the sight of his initial cyst. At the advice of our ENT we were keeping a close eye on it just in case it developed and turned out to be more cystic tissue. Since moving to Kansas we haven't had much interaction with a doctor with regards to this until this past summer. Our new ENT decided to run some CT Scans to see if this was indeed more developing cystic tissue. It turns out it was not HOWEVER they did discover a deformity of the vertebrae in his neck. From that scan he was scheduled to meet with a pediatric orthopaedic specialist to see if anything further needed to be done. (I'm sorry if I'm boring you....congratulations on making it this far if you are still reading)

After meeting with the Orthopaedist in October we found out that Brinton has an anomaly known as OS Odontoideum. Basically the dens in the C2 didn't form and attach properly and his C1 & C2 vertebrae are out of whack. This causes some spinal instability and possible pressure being applied to the spinal cord. The doctor was very encouraging, however, he did state that if Brinton were to ever have an injury to his head/neck region the possibility of full body paralysis (like Superman, Christopher Reeves) was very likely. As you can imagine the shock of being told this information has been weighing heavy on me over the last several months. For some reason I didn't realize how much it affected Brinton until I overheard a conversation between him and his sister Elise. Elise had jokingly bopped him in the head while they were playing around. Brinton told her that she needed to be more careful because if she hurt his neck he could wind up in a wheelchair. Hearing those words out of my little boys mouth made my heart sink deeper into sadness. I can't imagine how selfish I had been with my emotions. I couldn't believe up until that point I actually thought that none of this affected Brinton. I didn't even realize how closely he'd been listening to the doctor as he explained all these things to us.

An MRI/MRA was scheduled for the day before Thanksgiving, during which they would be doing flexion and extension testing on his neck to see if there was any pressure being placed on the spinal cord. Unfortunately, my sweet little 8 year old was unable to remain still during the MRI (I can barely stay still in an MRI, I really don't know how they expected an 8 year old boy to stay still) and therefore they had to reschedule the whole thing for Dec 23rd.

This passed week on Dec 23rd, the day before Christmas Eve, Brinton was prepped and sedated for a 2 hour MRI/MRA scan of his cervical spine. His pediatric orthopedist attended the scan so that he could perform all the flexion, extension processes while Brinton was under sedation. Watching Brinton leave with the nurse through those cold large metal doors was heart wrenching...like watching him leave for a surgery. Maybe I'm overdramatic because I know it was only an MRI but it just felt like this MRI was going to decide everything from here on out.

This evening I received a call from Brinton's doctor. At this point we know that there is some abnormal, concerning movement of the cervical spine that needs to be addressed. There is pressure being applied to the spinal cord which can be very dangerous and damaging. Our doctor will be meeting with a pediatric neurosurgeon to review the scans and to discuss what will need to be done next. Basically all we know is that they are probably going to intervene to some extent, whether that be a cervical fusion or some other surgery we are unsure at this point. We should know by the end of the week (hopefully) what's next for him or atleast have an appointment for our next visit with the specialist. All these things are weighing on my mind like a ton of bricks, my heart hurts, my chest feels like there is something sitting on it. I can't imagine my life without my normal, healthy little boy. Of course my mind goes right to the dangers, the risks, the negative. I feel so angry. Hasn't he been through enough already. It's so unfair. I don't even know what to think or to say. Just breathe.

Could you please just say a quick prayer? I don't even know what I want you to ask for...just remember Brinton....for me?