Friday will be 4 months status post Gabe's 4th Craniosynostosis surgery. Of course this is the child that should have only needed 1 surgery. Yep... That is him. :)
Gabe-May 2009 1 month before Craniosurgery #2
Gabe-October 2009 14.5 weeks status post 3rd cranio surgery. Going in for Cranio surgery #4 this day. You can see the "lump" just in his hairline and how is sinks down. This was 1 place where his skull collapsed.
Gabe-January 29, 2010. Almost 4 months status post 4th Cranio surgery.
Don't let the above picture fool you. We still have Good Days, Bad Days and Horrible days. Our bad days are now so manageable that we still consider them Good Days. We have horrible days weekly, but our Good Days out number our horrible days. THAT is success. I have noticed that Gabe is more sensitive to barometric pressure changes. And he seems to be accomodating to a low pressure much more quickly than before. But we have a ways to go before we are bottomed out on our shunt. We do know that he will need at least 1 more surgery. We will go as long as we can before doing it again. We had an MRI a couple weeks ago. Things look good in his skull. However his brain GREW another 130 cubic millimeters. At this age the brain should not be growing. Things are cramped a bit in his skull, but this is not the time to worry about it.
We are taking the time to appreciate our Luck. Dr. Frim told us going into Gabe's Surgery in June that there was no documentation to show how Gabe would respond to his head being made bigger. He was pretty sure that we were going to make him worse. He was honest with us and told us that. He said if we chose to make his head bigger that it would be a Leap Of Faith. I am so grateful that Dr. Frim was up to the challenge to take that Leap of Faith.
I have my little boy back. He runs and plays and *I* nearly have a heart attack when he almost bumps his head on anything (since we still have huge holes in his skull). It is so nice to be able to talk to him and have him remember what we spoke about. It is nice to not to have to feel like living with Gabe is like 50 first dates or ground hogs day. We still have those days when his pressure is high, but it is not every day. He still has neuropathy and we use a wheelchair when we have to do any significant walking or standing. But he is outside living again.
I have come to accept that fact that MY normal is not other people's normal. I have come to accept the fact that Gabe will always have some degree of pain, but when we can manage that pain with Tylenol or Motrin and not methadone, loratab and antidepressants (used for nerve pain) that we have improved. Gabe will never be allowed to play football or soccer. We will always have a shunt and chiari symptoms. We will need another 1 (or more) cranio surgeries and that is all a fact of life. I have to embrace that. This is the journey that we are on. I am not sure why we are on this journey, but it is not mine to question. God has given me the strength to get through the dark times when I "just know" I could not get through them. He has put people in my life to help me walk this journey.
My amazing children walk through this journey, not knowing any better and accepting what they have been given. They are strong and brave. They push through and survive and succeed at whatever they set their minds to. They might have more pain when it is over or it might take them longer because they have to stop to rest... But I look at them and realize that somehow along the way, they have learned to be strong, graceful and brave. I do not believe that I can take credit for that. God must have come to them and touched them while they slept to teach them this lesson. It is a lesson that I and so many others struggle with.
I am so blessed. We are all so blessed. We have our children to hold onto and hug.
No comments:
Post a Comment