DECISION MAKING TIME . . . . YO!

My initial reaction was NO WAY!  How stupid do you think we are?(awwww she said the "S" word)

kid + brain tumors + growth hormone = really BIG tumors!

I had always heard whispers in the NF community that you NEVER give a child with NF growth hormones.  That would be asking for trouble.  I can't really pinpoint where I heard that; from a doctor?, another parent?, read it somewhere?  I don't know.  Not sure I can base my decision on a whisper from an unknown source.

So we asked ourselves, what if we do nothing?  What if we just let him be short?  I mean, there are lots of short men that are happy and successful.  Right?  Right.  Then comes the big "but".

Without growth hormone, as Carter gets older, his heart, lungs and bones will be affected.  Another risk of leaving this untreated, is the risk of Diabetes.  So, unfortunately it's not as simple as short or tall.  It goes beyond that, to the health and well being and possibly the life expectancy of our sweet boy.

Granted, there are bigger decisions than this to be made in life, but when you're dealing with your child, it's big no matter what.  First, when we talk about growth hormone therapy, we're talking about daily injections, given at home.  Scary.  Second, and most worrisome, the math equation above!  We certainly don't want to cause tumor growth. We've spent the past 7 years trying to prevent it!

  

So, where do you go when it's time to make a decision? I don't know about you, but I pray.  And that's exactly what I did.  I prayed that God would give me a neon sign.  "Lord, just make it so obvious to us that this is the right direction and the right time."  And, well, peeking levels at 2.7 when the normal is above 10 seemed like a pretty bright sign to me.  Not to mention the overall excitement and peace I have about getting started.  Could this be my neon sign?  I don't know for sure, but I can tell you that I know who's in control and I know that He will lead.  In the mean time, I'm just going to be excited! 

For those that have known us and Carter for the long haul, you know we have struggled with a lot of things beyond medical.  We've had many behavioral mountains to climb and the climbing has been painfully slow.  Knowing that there could be a reason behind these problems we've had, knowing that it's possible we have finally found an answer to a significant piece of the puzzle and the hope that has been refreshed in us, is exciting!  

Carter is almost 8 years old, and though he's very intelligent (scary smart), he behaves like a 4 year old.  His maturity level is, in a lot of ways, below our 4 year old girls' maturity level.  

For the past few years, his birthdays have been hard.  Seeing him "age" but not grow, physically or mentally, is sad and I find myself dreading his birthday.  The potential that we see in him is so great, but the realities that we can't seem to overcome, have been discouraging.  

This new adventure gives us great hope and we are waiting expectantly to see the great things that God will do through Carter and these new experiences.