Incison Issues....continue

First of all, I want to apologize for not staying on top of this blog better. Once our school year started, I have been going strong and have not had much "spare" time unfortunately. Speaking of, school is going great! For those of you who do not know, I am teaching 2nd grade here in Idalou, and Caed has been allowed to be in MY CLASS! I have 14 other students and I truly love them all. I was never worried with Caed being in my room. 99% of the time, he literally is just a regular student....just like the rest. However, the few times we have had to deal with incision (or tummy) trouble, I am SO GRATEFUL to be near him! I had the privilege of homeschooling Reagan (3 yrs.), and now count it equally gratifying to be able to teach Caed. This is a special year that I am not taking for granted.

Now for an SBS update: Caed has done wonderfully ever since the gallbladder removal back in June. No more pain. Thank YOU God for that! However, we continue to have incision issues. There is a small section that just has not healed. Our local surgeon, as well as UNMC, feels it is just granular tissue. We have been burning the site a couple of times a week with silver nitrate, but honestly.....have been very frustrated at the lack of progress. They say it unfortunately takes a long time, but...ughhh! Maybe it just looks worse than it really is. We also are dealing with the "mystery stitch" that won't go away. It is a small blue stitch that sticks out of the skin. NE said they probably would just pull on it...and snip it off.

We are also aggressively weaning Caed from his tube feeds. So far, so good, but I constantly worry about his weight. In lieu of the decrease in calories, we have been pushing PediaSure, which Caed loves. Dr. M wants him to be completely FREE by Christmas. Then we will see how he does (weight & labs), and look to remove G-tube this spring!! A WONDERFUL thing.....yet as with all the other "changes " the past few years, it has me terrified. As much as you hate these machines, tubes, and meds.....it becomes your life. Your safety net. Without them, fear steps in. We will certainly cross that bridge when we come to it, Lord willing.

So, two specific prayer requests for Caed: Incision to heal up & weaning from tube feeds to be successful. THANK YOU!!!!

Other than those things, life is going strong (and busy!). Reagan and Caleb are doing wonderful! Todd and I are again trying to adjust to our new life as 2 full-time working parents.

I have attached a picture of Caed's incision. Sorry for the quality! (never could get it to load right) The silver nitrate will produce a scab....but then falls off, and we start over. The tissue has gotten bigger over the past 8+ weeks, so we are kind of in limbo with what to do next. These are the days when living 700 miles from our child's doctor is not ideal. Although NE has said we might need to make a "quick trip" to see what's really going on with this awful incision.

Thank you again for continuing to follow Caed's journey. And I really do promise to do a better job keeping you all informed.