Prayer request from a friend

For those that don't know us - please check out the link to our friends son Gabriel - he's about 3.5 years old and has some rare and unknown blood disorder.  VERY BAD - he needs blood transfusions about every 3-4 weeks now to just live.  Anyhow - during tests last summer to try to figure out the blood stuff (so rare less than 100 people world wide have it- and still not sure what it is)- so they found a brain malformation and some other spinal issues that require that he have surgery - so the email copied below is an update on this.  Rebekah also just had her 4th baby right before Christmas - he was a much needed blessing in the family's life -little Samuel.  

So anyhow - I realized so many people around the world read this - please keep them in your prayers and thoughts.  They need it.

Thanks

Gail

POST ABOUT GABE:

Family & Friends,

I finally found a moment to write…   Last week Gabriel had an MRI and we had a consultation with the U of M surgeon.  Although there was not much change with the size of the Syrinx in his spine (large cyst growing in the spinal cord that could potentially cause damage to the cord) we were warned of what could happen if we do not proceed with surgery.  There is a chance that Gabriel could lose the sensation in any or all of his extremities, control of his legs or arms, loss of bladder and/or bowel and many more possible symptoms. Worse part about it is there is no warning and some of the nerve damage cannot be reversed.  Upon my research and stumbling across other children’s stories I have seen some in wheelchairs, in chronic pain and many other unthinkable scenarios.   I think we both decided after this scary information that it’s only fair that we go ahead with the surgery to hopefully avoid these issues.  There is not guarantee the spinal Syrinx will resolve or stop growing with the brain surgery… we can only hope.  If it does not, we are looking at repeat brain surgeries and possible spinal surgery.  Every person with this brain malformation presents differently. They assume it will help but that is not always the case.  We are also very concerned with the complications that can arise.  The most common is a spinal fluid leak that warrants an immediate surgery to correct it. Although it is not particularly common with a Decompression Chiari surgery, a more serious complication can be paralysis.

So, at this time Jason and I are trying to make the final decision of which surgeon to go with.  We have two very experienced and qualified surgeons.  As I’m sure you can imagine, making the choice of who will go into our son’s brain is a difficult one.  Please pray God will give us wisdom…

The surgery will be within a month.  We are getting our ducks in a row and preparing emotionally the best we can.  Trying to be comfortable with this and researching as much as possible.  I think one of the major concerns is Gabriel losing his beautiful spirit.  He has come so far… Being sick for so long and going through what he’s gone through and now this… This is completely unrelated to the battle he’s been fighting for 3 years. I just don’t know how we are going to explain this to him.  He has no idea it’s coming. 

If you’ve ever said you would pray for us please do it now.  If we ever needed it before… it’s now.

I wanted to mention how very much we appreciate the support and compassion we’ve received from so many people.  From taking Ashton to and from school every day to bringing us meals and groceries to sending us beautiful cards and gift cards for our family.  Some of you have helped by babysitting, cooking for us, gifts, visits, prayers and even a phone call. I think the goal is to try and take whatever burden you can from us so we can gain strength, heal and support each other.  So we can focus on what we’ve been handed and make the most of it.   You know who you are and you have no idea how much it changes our perspective on this extremely difficult situation.  The support has shown us God’s mercy and love.  Thank you for being a part of that.  You will be blessed!  Thank you! Thank you! Thank you!

Any day that our family or Gabriel crosses your mind please pray for peace, strength, hope and wisdom to make the best decisions.  Pray that nothing happens to him before the surgery takes place.  I have read a story of a child who had nerve damage before his scheduled surgery.

I will post as much as I can.  In between feedings, taking caring of four and preparing for the surgery.   As soon as I make the surgery date (probably this week) I will post the date. 

The Adler’s