It's not common for me to be the optimistic one in our relationship...but tonight, Chris and I are taking our fair share of that responsibility as we swallow the news from today.
It's not that we weren't expecting this...we were...it's just hard to hear when for this full year and a half we've had such high hopes that it wasn't true....
Mason has Cortical Dysplasia. We knew it...we just didn't know the extent of it. Mason's cortical dysplasia is quite extensive. What this means is that many parts of his brain were affected when the neurons didn't go to the proper place in utero. Mason's brain is very underdeveloped. I asked if there were certain aspects of development that would be affected by this, or if it would be more generalized, and Dr. Koehn answered that it would be more generalized...meaning that speech, physical development, learning, memory, everything...will be affected.
Dr. Koehn was shocked that Mason hasn't had more seizures with the extensiveness of the dysplasia. Because the dysplasia caused a lack in brain development and "white matter" in his brain, it is more common for seizures to occur due to the lack of "connections" being made. This being said, I asked if his seizure disorders were going to be life-long, and she said yes. Mason will always have a seizure disorder and it has the potential to get much worse. The positive side of this news is that Mason has the type of seizures that are more easily controlled with meds, diet, etc.
By the end of our meeting with her we were discussing things like wheelchairs, building a handicap accessible home, etc. This really put it in perspective for me...I couldn't even look at her for fear that I would cry, thus making me look weak. When we left, I turned to Chris, tears in my eyes and he simply said "It is what it is".
Mason is our first-born and this probably happened for a reason. He deserves all of our love and affection. Dr. Koehn also made a statement about the recurrence of this..and although VCFS was a random mutation, we aren't sure if this is genetically linked...meaning more of our kids could have Cortical Dysplasia. Likely this is related to Mason's underlying chromosomal condition, but we don't know that for sure. And there is no test for this...so I will make a call to Genetics tomorrow just to see if they can find out any additional information.
We are so lucky to have a happy boy. Mason's personality and the joy it brings makes this so much easier. We know it's going to be tough to raise him...but we're up for the challenge.
So, rather than bombarding all of Mason's blog readers with more medical mumbo jumbo...I'll leave it at that. Chris and I are convinced that our luck is going to change very soon...and maybe I'll win a trip to Mexico. :)
We know this is a hard time for you both, but know we are here to help you in anyway we can. God gave us families for a reason and he will give us all the strength we need to help you and Mason thru his growing years. Mason is so precious to us and we thank you for all the joy he has and will give us.
ReplyDeleteCan't wait to see his smile and snuggle with him this weekend.
Love Gramma-Grampa Mrdutt
My heart aches for you all. All of you are lucky to have each other. Alone, each of you may be weak, but together and with the help and love of God you'll be strong and make up a loving family. You're in my thoughts a great deal and I want you to know that I send my love your way.
ReplyDeleteIt's hard to balance dread for the future and hope for the future. We don't have any idea WHAT challenges we'll face, even with a specific diagnosis for any problem with any of our children, right? It's also very difficult to ponder the worst case scenario (to which the doctors will always defer) and the best possible life for our child (where there's hope and progress, despite the challenge presented!). I don't mean to be miss mary sunshine here, but hasn't Mason already defeated certain odds and milestones that you were told he would not? I'm sorry that you have a lifetime of Mason's care and dependence to worry about, but I'm much more hopeful and see a very bright future for that big guy and any of his future siblings. I know you guys have a lot on your minds right now and don't need anyone hinting about how to live your life, sorry if this seems bossy (oldest sister, can't be helped) but there must be a reason God brought us all together and I choose to believe it's so we can all work together (even if it's at a distance, and only with prayer and love) to help Mason live to his full potential and help others in the world in their understanding of the beauty of LIFE, no matter what it's physical/mental difficulties!!!
ReplyDeleteI don't see this diagnosis as a downer at all, but a springboard to proving everyone wrong and/or upping our armor in the battle against brain disorders and healing therapies for VCFS!
Again, sorry if this seems too positive (nothing more annoying when you are trying to process "bad" news), but I just want you to know we got your back in this little corner of MN. We will always be praying for your family and especially for Mason.
P.S. You've got the perfect family for these trials. Those grandparents/aunties/uncles all really love and care for your family and that is such a great blessing and inspiration!
Thanks Laura! You have said exactly what I couldn't get out!
ReplyDelete