I have news about Gannon…Happily, it’s good news!!
At the end of last week, Gannon was at my house and asked for a cracker. He’s allowed to try to eat whatever he wants to. He can still swallow (if his swallower works) even though he has the tube.
Up to this point, he had been trying things here and there but, it wasn’t always successful. It often ended up with him almost choking and spitting things out in the toilet. It was no fun. But, he was asking and we wanted to have him keep trying so I gave him a cracker and put Kalissa on alert in case he started choking. Gannon walked off and about 10 minutes later, he came out to the kitchen and said he ate the cracker. WHAT?? I didn’t believe it. I figured one of the dogs ate it but they didn’t. The dogs were in their kennels.
I asked him is he wanted another cracker and he said yes. He ended up eating about five crackers that day. I was so happy.
The next day he was over and asked for one of the cookies I was baking and….he ate it!!
He asked for Cheetos and …he ate them too. He is so proud of himself when he can do it. Slowly our guy is coming back to us. He was so depressed, his whole body read depression. It was so sad to see. He carried the bag around the house…and I let him. It’s totally against normal house rules but I DIDN’T CARE!! If he’ll eat, he can do anything he wants.
Kalissa was able to get a pump so when he does get a feeding through his tube, it’s more manageable. It only takes about 90 minutes at the most.
Gannon HATES the feedings. Really hates them. He now fusses and throws a fit to try to not have to do it. Of course, he has to be fed if he needs it but, we’re also using it as a way to encourage him to try to eat.
For the most part, he’s eating enough to get down to one feeding a day, and then Kalissa gives him two cans when she hooks him up and makes the pump go a little longer.
The biggest hurdle right now was getting liquids into him. Yesterday I finally got him to successfully drink a juice box. In fact, he drank TWO!! He has tried water from a cup but that doesn’t work. He’ll immediately be at the toilet spitting up. Small sips have been the trick.
Here he is posing with his empty juice box. He was so proud of himself.
He is going to speech therapy as they work with how a person’s mouth works and tongue moves to aid in swallowing as well as speech therapy. That is going great. He tried a drink of water there yesterday and that didn’t work either. So for now, we’re working with straws and will continue to try water from a cup.
Yesterday at my house in the morning he ate:
a small kids’ pack of shortbread cookies
10 Ritz crackers
a nutty bar
2 drink boxes
As you can see, the food he’s eating isn’t the healthiest but at this point, we don’t care…the main goal is to get him swallowing, and happily that’s happening.
I did try scrambled eggs. That was full-out no. He tried them and ended up at the toilet. He tried yogurt and that went okay. Kalissa has tried applesauce and that has gone okay too.
I asked him if I made noodles if he thought that might work. He said yes…so the next time he’s here I am making something with noodles in the hope that it works.
We keep trying. Right now our next goal is to try to get some kind of protein into him. So far it’s mostly junkie carb-filled foods. That’s all okay, but if we want to get the tube out, there have to be some foods with more substance to them.
Many thanks to my friend Barb for bringing cupcakes with wonderful frosting. They tempted Gannon and he ate the frosting. Thanks to the wonderful blog reader who sent Gannon a teddy bear. He’s not been a stuffed animal kid but he has totally latched onto the teddy bear. It surprised both Kalissa and me.
Thanks also to the many people who have sent gifts of money to help their family. Right now Gannon has speech three times a week so gas adds up. Then in January, he has a host of appointments in Iowa City again. We’re not in the clear but you can see from the pictures, we’re close to getting over the hump. I couldn’t be happier that he is so depressed anymore too. The spark in his eye is coming back and it’s the most precious thing ever.
Seeing Gannon so sick and hurting has been pretty rough on me. It’s not a secret that I’m really close to him. We’re not supposed to see our grandchildren struggling as he has. My heart goes out to all of you who are dealing with sick children. There is just nothing worse.
I’m so thankful and grateful for all the support our family has had along the way. I’ve gotten so many notes and messages from people checking in. I really appreciate it LOTS! I have my fingers crossed that maybe next week, he can lose his tubie. I might be a little optimistic but each day we are getting a little closer and a little closer. Thanks for hanging here with us and we work our way through this…