This is a pretty long post but it's been a couple of years in the making, so we're pretty excited! and as neglected as this blog has been the past few months, a long post is due ;)
When we first received the call about Shaun in September of 2009, other than his heart condition and paralyzed vocal cords, there was the issue of his feeding tube. He basically took nothing by mouth and had an aversion to anything being in/around his mouth area. It was uber-sensitive and due to lack of stimulation, any touch even on his face or neck would cause him to start gagging. It was so sad and made us pretty nervous about touching him from his neck up :( Over the past 2 and a half years, things have certainly changed for this little man! His vocal cords have definitely become "unparalyzed" and in the last year, he started eating! The touch thing is way better too! I love to tickle him under his neck because it's such a great reminder that God has redeemed a place on his body that once brought him so much pain and discomfort and now brings his great joy!
Here is a journey thru pictures of the "feeding tube" adventures of our Caleb Shaun
The day we brought him home from the hospital. All "plugged in" and eating The black backpack or white cord hanging out of his clothes is an indicator that he's "eating" :)
A decent picture of his feeding button - oh the adventures we have had with this button! Replacing it, looking for it in poop, the rawness of his skin when it leaks, and of course, all of this with a rare button. Not the standard MicKey button - but a BARD button that is hard to get parts and accessories for...
This tube became such a part of us that we sometimes weren't even aware of it! Here's a video showing you what I mean.
The feeding tube at Halloween.....
going to church....
at Thanksgiving and Christmas!
it even traveled in the stroller with us :)
I love this picture because it's a reminder of the fights we had with Caleb's feeding supply company to get the right kind of tubes sent to us. Chris literally had to take pictures like this and send them to the company for them to understand what he was talking about.
The older he got, the more it just became portable with him.
Sometimes it wasn't in the backpack, instead it was on a pole that we carried around. Mostly the pole stayed by his bed for overnight feeds.
Caleb's first Birthday (8/2010). He's finally OK with stuff on his face but you can rest assured that none of this was actually ingested into his body :(
Then last year around the middle of January (1/2011), we had several snow days where Chris was home from school. We ate all of our meals at the table together because there was nothing else to do and I guess somewhere in all of that, Caleb saw that eating wasn't terrible. In this same timeframe, God, in His providential timing, worked it out that his feeding tube broke and Shaun had to go a couple of days without us using it. I guess he got hungry enough and it flipped a switch in him for our food adventures! We were literally at the mall and gave him a pizza crust to play with. Well, when we looked a little while later, we noticed that it was missing and then realized that he had eaten it! We couldn't believe it! But were super glad that we had turned a corner with his feeding. The past year we have tried so many foods to help him enjoy eating. It has been so fun to watch his life and the miracle that it is transform right before our eyes. There are days that it's terribly frustrating, but overall when we look at the last year, it screams of the goodness of God moving in Caleb's life.
A VIDEO of one of our early eating experiences.
Because him eating is a big deal, we have lots of pictures to document it :)
Before he ate with regular utensils, we would use these little pink stucks. They were basically lollipop sticks with foam on the end. We would wipe things on his lips with them, or try to get them in his mouth, whatever the therapist, Mrs. Heather, said to try.
With all this eating going on, we had slowly weaned him off of the feeding tube and have asked over and over for the drs to remove it. There are alot of drs (pediatrician, cardiologist, surgeons that help with button replacement, Developmental pediatrician) involved in Caleb's life so that's a harder job to get done than you would think! But after months of asking, in November, we finally got permission from all the powers that be to have his tube removed! This happened as it broke off and was going to need to be replaced again anyway so that helped encourage the drs to not put a new tube in :)
This trip to the hospital was right after it broke off (12/2011). It was amazing to watch the outside of the tube break off one night and the next morning for his skin to basically have closed up - except for a small part. The problem with this? We thought the inside of the button was still in it's track between the outside and his stomach! So, Chris took Caleb to the ER to have the surgeon there look at it. They were sent home with instructions to just let it be and see if it would close up on its own. :(
So, home they came. It was pretty gross because whenever Caleb ate - which was often - parts of the food and digestive juices would come out of the hole! Which is cool the first couple of times but once the juices starting burning his skin and making it raw, that was less fun :( Changes bandages with food muck and blood isn't as much fun as you would think it is! Every meal became a trial because as soon as he would start digesting, it would burn the raw skin around the hole and he would start screaming. It was miserable! For him and us...
This all came to a head for us on 12/19/2011. That evening as we tried to force him to eat dinner (while he was screaming and pulling at the bandage on his belly) Chris and I realized that he hadn't eaten all day long. So, off to the ER we went again with our minds made up that we wouldn't leave the hospital until they had closed up the hole in his stomach. Very long story short, on Wednesday morning after much prayer from lots of people, we found favor with the surgeons and they came in that morning and asked what we wanted to happen. Chris said for about the 50th time that we wanted the hole closed up, and they agreed! So, surgery on Wednesday around lunch time we had! Caleb ate dinner that night and breakfast the next morning, and we were sent home! - just in time to pack for Christmas and head to FL for a week :)
Here are some pictures - and a video of our time in the hospital
Eating in the Hospital complete with VIDEO (it's a little gross)
That is one precious miracle sleeping in that hospital bed right there! This was right after surgery where he was still sleeping great as a result of the anesthesia :)
Since that surgery day, we haven't had a single problem with Caleb eating! It's crazy to think that a year ago he didn't eat at all and in 11 months he went from eating nothing to having his feeding tube removed because he now eats enough to sustain growth without the extra nutrition. We know that we have been blessed with unbelievable drs, surgeons, therapists, and friends to help us along this journey but we ALSO know that Caleb Shaun's life is a miracle. One that has been provided for us to witness with our own eyes by God Himself.
So, don't try to tell us differently because we KNOW who we believe in and are persuaded that HE will keep this little boy in His keeping until the day of His return.