Ryan is doing so well! He’s back to his old, normal self which is so nice to see! Those first several days after surgery last week were tough ones, and we both wondered to ourselves if we had made the right decision. But as I said in the last post, sometimes you just have to go with your gut as a parent and do what your heart is telling you is the right thing. And for us, that meant changing Ryan’s flush schedule from what the surgeon told us to do to what we thought was manageable. And we were right! Ryan’s body has responded wonderfully to the cecostomy, and we are flushing his colon every morning with results coming in less than an hour. Now that we are through the initial shock of surgery and the changes to our daily schedule, we are so very happy we decided to do this. Ryan is no longer in pain, struggling to stool. And we don’t have to give him any laxatives anymore or worry about tracking his stools and how long it’s been since he went. I would highly recommend this surgery to others who struggle with a failing GI system, paralysis or severe chronic constipation.
This week is busy as summer comes to a close. In ten days or so the kids will be heading back to school. I’m not really ready to deal with homework, studying and early mornings again, but I am very much looking forward to football and volleyball. We are going to be very busy for the next few months but it will be a fun kind of busy. Sidney and Ryan are both transitioning to new schools but thankfully everyone will now be on the same schedule with school starting and ending times which will be nice. It’s hard to believe we will never step foot into an elementary school again, but I’m excited to have them all in only two buildings for pick up/drop off purposes.
We are still looking for someone to do respite for us this fall and have not had any luck yet. Please pray with us that the right person will come along soon. If any of you know of a college age girl who might be interested, please let us know. It’s not a lot of hours – like maybe 5-8 a week at the most – but we want someone who is friendly and has a passion for special needs kids. In the past we have been so very blessed to find some amazing young women who have grown very close to our family. It’s hard to trust Ryan into someone’s care but thankfully the Lord has blessed us and we are trusting He will do the same again with this next person.
Travis and Sidney are in Idaho right now with Trav’s brother and his family. Of course they are having a blast boating, tubing and enjoying family and the beauty of Northern Idaho. I so wish I could be there but I get to stay home and take care of the boys. And it’s kind of boring without those two home! I miss them. I guess I’ll just have to look forward to next summer when we all meet in Park City, UT, for a week of family time.
Thank you, once again, for all your prayers for Ryan these past two weeks. God is the great healer and He has done a fabulous job taking care of Ryan. Here is a picture of his Chait door which is the name of the tubing used for the cecostomy procdure; his belly was still pretty red and there was still a steri strip or two. He also had a smaller feeding tube placed during surgery instead of the one he has had for the past seven years; it’s better quality and doesn’t stick out so far. He now has a vagus nerve stimulator deep in his left upper chest, the feeding tube in his left upper quadrant and the Chait in his right lower quadrant. I think that’s enough hardware for one body!
There is a song by Danny Gokey, a Christian singer who made his debut on American Idol, I absolutely love. He made his first appearance on the show only four weeks after his wife died from complications after surgery for a congenital heart condition that she had a 90% chance of fully recovering from. It was his last chance to audition because he had reached the age cut off, and so only 4 weeks after her death, he started the journey God used to launch his music career. His first hit was “Hope In Front Of Me” which quickly became one of my very favorite songs. It’s one I played repeatedly in the past two weeks, especially when I would fall into the ugly pattern of listening to defeating thoughts, worry and despair that would run through my head. I struggled to keep hope, to grasp onto God’s truth, to remember there are better days ahead, not only for me but for Ryan too. Here are some of the lyrics:
I’ve been running through rain
That I thought would never end
Trying to make it on faith
In a struggle against the wind
I’ve seen the dark and the broken places
But I know in my soul
No matter how bad it gets
I’ll be alright
There’s hope in front of me
There’s a light, I still see it
There’s a hand still holding me
Even when I don’t believe it
I might be down but I’m not dead
There’s better days still up ahead
Even after all I’ve seen
There’s hope in front of me
There’s a place at the end of the storm
You finally find
Where the hurt and the tears and the pain
All fall behind
You open up your eyes and up ahead
There’s a big sun shining
Right then and there you realize
You’ll be alright