Countdown to Surgery

I cannot believe it is almost here. Beckett will have his surgery Monday morning in Dallas.  During Beckett's enema on Saturday (which is really quite the ordeal and set up), I realized that we were now counting down the days of rectal enemas.  He will still receive enemas, but after his surgery, it will go through his cecostomy and not his bottom.  This will make things much easier on him...if it works! There is an 80% success rate for cecostomies in general.  Please pray that it works for Beckett. It is not going to be an easy surgery, and I pray that it helps him and works for him!

After many different opinions, it has been decided to only do the cecostomy for Beckett.  They will not be adding on the G tube at the time.  A G tube procedure is a fairly minor surgery, and they feel like if it is needed later, than we will just do it later.  However, they do not think it is 100% necessary at this time.  The cecostomy or ACE procedure is the bigger surgery and the one that they are certain of.  When they get into the operating room, they will determine if they can use his appendix to make a tunnel.  There is a chance his appendix will not be usable in which case they have a different plan (not sure what it is- but I believe they can use the small intestine).  Then they will route the tunnel to his colon at the cecum.  This button to tunnel/tube to colon access will allow us to do his enemas from the top down.

There are several reasons the doctors have different opinions on the feeding tube (and always have). But the biggest argument about a feeding tube for Beckett has always been based on the question-- is his size due to nutrition/absorption problems or is his size due to something else that will not be changed regardless of nutrition. The geneticist, who we just so again recently, still feels certain that his size is not a nutritional issue.  She believes that he has some form of skeletal dysplasia (short stature, dwarfism) that simply does not show up in the genetic testing (not the first time we have heard this).  She thinks whatever it is that "he has" is affecting his skeleton thus meaning no amount of nutrition is going to change that. Instead, she actually believes we should stop pushing the high calorie foods, etc.  Dr. L thinks that when you consider his height measurement compared to his head measurement there is no other explanation other than skeletal dysplasia. He also has some other markers/characteristics that are considered.  I will try to touch on this more later, as I know there are several questions regarding this. We did just find out this week that Beckett's information is being passed on to research that will work to discover answers for many undiagnosed kids.

Today, by 1:00 pm, I have had 10 "unknown" (meaning a hospital) calls on my phone. For some reason, all the phone calls and coordinating is hard.  So I am going to keep this short for now.  Oh, they just called again.

Anyways, I will be updating more over the next few days and after his surgery on Monday.

I cannot thank you enough for the generous outpouring of love we have experienced over the last month.  Thank you so much for your prayers, encouraging words, and gifts.  It has helped us so much, and we feel much relief. I really don't have words to express our gratitude.  Thank you.

AHHHH! I got a big boy haircut!!

Now, more serious...

I caught him mid-word: "cheese!"

Summer Fun!

"uh-oh! my load was too heavy!"

Off to swimming lessons!

happy boy!