Wednesday, August 17, 2011

Last Tuesday we celebrated Seton's 5 month birthday.  It has been one incredible journey in that time, but we're very thankful for every day of it.  He is a blessing to us and a blessing to so many others.  Thank you for sharing in this time with us.

Seton's G-tube surgery is scheduled for Monday, August 22nd.  We are praying for a successful surgery with a quick and complete recovery.  We would appreciate your prayers also.  I will do my best to update you all when he's out of surgery and we get settled in for our hospital stay.


Thursday, August 4, 2011

I’ve dropped the ball again on our updates.  It isn’t unimportant to us, because we’re so glad to have you all involved and supporting us.  It’s just a matter of time and energy.  The blog is always on the list, but most days the list doesn’t get completed.  So there’s my ongoing apology.

Seton’s swallow study did not go as we hoped.  He was given glucose water with some barium in it, and delivery was attempted with several different types of nipples without success.  He just wasn’t very interested in “nursing” at that time.  They tried injecting some of the solution directly in his mouth, but he mainly played with it with his tongue and swallowed almost none of it.

That led us to Seton’s appointment with Dr. Habersang last Friday.  Seton has been having lots of irritation, and therefore lots of blood, associated with his tube recently.  If nothing else, it’s been challenging to watch.  The general consensus is that we have gone about as far as we’re able to with the NG feeding tube.  Dr. Habersang feels like Seton’s growth, progression, and size now merit the G-tube surgery.  Although it bears a considerable amount of risk with all factors, upon recovery it should improve his overall quality of life and make things simpler on everyone.  99% of our hospital/ER visits should be eliminated, and he will become much more mobile.  We hope the new ability for increased social interaction will aid in his development.

The surgery is a pretty big deal for us, and we are fairly apprehensive about it.  It will require us to be in the hospital for at least a week, and will also entail a 6+ week period of healing and recuperation afterward.  We’d really appreciate all of your thoughts and prayers toward a safe and successful surgery, as well as a quick and complete recovery.  I promise I will do a better job of updating with important details…the first being the surgery date, as soon as it’s scheduled.


 1 I lift up my eyes to the mountains, where does my help come from? 2 My help comes from the LORD, the Maker of heaven and earth. 3 He will not let your foot slip, he who watches over you will not slumber; 4 indeed, he who watches over Israel will neither slumber nor sleep. 5 The LORD watches over you, the LORD is your shade at your right hand; 6 the sun will not harm you by day, nor the moon by night. 7 The LORD will keep you from all harm, he will watch over your life; 8 the LORD will watch over your coming and going both now and forevermore. – Psalm 121