Update from Molly about Simon

Molly sent me this today!  Helps when she sends exact info as I am bad at keeping up with the medical terms.  I am sure Molly wishes she knew none of this, but she is definitely the expert!

Simon's doctor is really trying to find a solution to get the esophagus to stay open so he doesn't have to operate so often.  So in 2 weeks when we do this again, he is going to try injecting a steroid called kenalog directly into the scar tissue in his esophagus.  The hope is that this will slow the stricture so we can spread the procedures out  bit.  If that doesn't work he is considering going back in and cutting the whole piece of scar tissue out and repeating the repair.  This is obviously not what we were hoping for.  The surgeon said he has never had a stricture that he could not get to stay open with dilation, so he is pretty frustrated too.  I know he has Simon's best interest at heart and will figure out a solution.  All the things he has mentioned are things Boston Children's hospital does everyday... they have a program which is entirely dedicated to esophageal atresia.  It is also where Dr.  Foker (the Dr who came up with the procedure that grew his esophagus so it could be repaired) practices.  Anyway, the point is, Dr. Soldes WILL figure it out, I have no doubt in my mind.  

Look who started on cereal!!!!!!  I am thinking he likes it! : )  Since he is gifted (LOL) he feeds himself already!

Here is just a happy, lazy day!

It's that time again

Simon is in need of his routine surgery again.  This will be the norm for the indefinite future.  Poor Simon's little opening in his esophagus just does not stay stretched enough to stay open without surgery.  He still has the little string from his nose to his throat that he has makes sure it is open at least the width of the tube.  I would day that tube is no thicker than the center of a Q-Tip. After the surgery, when the esophagus is dilated it is 3cm in diameter for the opening.

So back to Akron Children's they go tomorrow for the surgery.  Simon did much better recovering the last time.  It takes a couple days to get the anesthesia out of his system and then he feels good until a day or two before his surgery. When he needs the surgery he is not feeling so well.  So today is a long day for Simon and Molly as they await the surgery tomorrow.

I visited with Simon 2x last week.  Both times he was super happy and full of smiles!  He is rolling around a bit and it seems like he has so much he wants to tell you!  I just love him so much!!

Blogger is acting up today, but I have pics to upload.  I will add them soon.


Please pray for Baby Simon that they do a great job on his surgery tomorrow!  It's getting into cold and flu season and both of these things would be really bad for Simon to catch.  Please keep him healthy!