Author: William

It has been over a month since our last post so we have a little catching up to do.

Evan is walking very well now, he’s all over the place and into everything. We’re still working on getting him to stand up on his own without holding onto something for support. It’s crazy how quickly he started moving once he got started, within a couple weeks he went from not walking at all to walking the entire length of the house.

Christmas was fun. Evan is not spoiled… at all. Can’t you tell?

Who knew they made roller coasters for kids? Amazing! And Evan loves it…although you would not always know it from the look on his face.

Evan’s Roller Coaster from William Wood on Vimeo.
Evan found his g-tube extension in the bag and attempted to put it on by himself.

Evan Tries from William Wood on Vimeo.

We have been fighting with Evan’s g-tube site for a while. It leaks profusely and it looks angry, red and irritated. It’s not terrible, but it’s not what it should look like. We made an appointment to have it looked at by our pediatric surgery office at Bronson in Kalamazoo. The surgeon that put the tube in was in the office so he came and took a look at it. His assessment was that the tissue we were seeing was not granulation tissue but was instead gastric mucosa … in other words, the tissue we’re seeing on the outside is stomach tissue and not the normal tissue that occurs as the body tries to heal over the site. It’s hard to explain without drawing you a picture… there are several layers of different types of tissue between the outer layer of the skin and the inner layer of the stomach. The layers have compressed and essentially turned inside out, I guess. In any case it’s not really repairable and the site needs to be closed up and the g-tube placed somewhere else entirely. If you recall what happened during the first surgery you’ll understand that we do not want to have the surgery at Bronson. Not because we think they were negligent or anything like that but because we want Evan to be somewhere that deals with heart patients if something “spirals out of control.” We were unhappy with the level of care that we received from the consultations with GI at U of M so we started looking at other options.

We chose Cincinnati Children’s hospital. They are about 5 hours away and have a phenomenal GI program (3rd in the nation) as well as heart program (8th in the nation). We had a consultation with them on January 3rd and were pretty happy with the doctors that we spoke with. Dr. Jason Frischer was very nice and helpful. While we were there we also talked to a GI specialist about Evan’s vomiting and a dietitian about converting Evan to a more appropriate diet for a 16 month old. We still have to schedule a consultation with cardiac anesthesiology and then the actual surgery. We’re hoping to have it done later this month. We’ll be in Cincinnati for a few days for the surgery and recovery.

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Proud and happy does not even begin to cover the emotion that was felt in our house today as Evan took his first walk across the living room. Before today his only hands-free adventures lasted a few seconds and covered a foot or two. The video below is a series of 10 clips lasting about five and a half minutes, they were shot over a 45 minute period. You can see as Evan gets more and more comfortable, goes farther and farther and at the end even lets go of the couch on his own and heads towards Sarah. I continue to be in awe of his strength, resilience, and most of all, the joy and love he has for everything around him.

Evan Walks from William Wood on Vimeo.

I hear this is where the real fun begins. Oh goodie.  😉

Evan is getting closer and closer to walking. We’re not in any hurry, he gets into enough trouble as it is already but alas, our little boy is growing up. 🙂

Evan had taken 3 really good steps on his own during our PT appointment yesterday so I pulled out my phone and shot the following video of him.

Evan takes a few steps at PT from William Wood on Vimeo.

I love to hear Evan laugh and this video is full of laughter. It always brings a smile to my face.

Mommy the Pony from William Wood on Vimeo.

I realized when I sat down to write this post that we have not written much about Evan and how he has been doing since we were in the hospital almost 6 weeks ago. Sorry about that. There have not been a lot of developments but the ones we have had are been pretty good ones. Evan is now walking! Not completely on his own, but he stands and walks along walls, furniture, and he pushes toys and chairs to get where he wants to go. When he’s not walking he crawls all over the house. I like to put him in one end of the house, walk away from him and wait for him to come after me. Putting his favorite cartoon on TV is great for that, once he hears the theme music he puts it in high gear.

When Evan is pushing his doggie, you can seen the pride in his face… It’s a truly wonderful thing to see him light up when he does something new. He is very motivated by praise, lots of clapping and yah’s. He will even stop what he’s doing and clap with us, sometimes releasing his grip on whatever he’s holding for a few seconds.

We started going back to OT and PT each once a week soon after we got home and things have been going pretty well. The people there had not seen him in over two months so they were really surprised and pleased with how much progress he’s made despite being in the hospital… well progress in motor skills anyway. His oral aversion is still there and although it is better he is nowhere near being able to take any amount of food that you could call nutrition. Evan will open his mouth just the slightest bit and let you put something in but he pushes and spits most of it out. He doesn’t make faces, it doesn’t seem to be that he doesn’t like the taste, he actually comes back for more, he just doesn’t know what to do with it once it’s in his mouth I think. It’s a very slow process and we’re making very slow progress but it’s moving in the right direction so we cannot complain. We had physical therapy on Halloween so naturally I dressed Evan up in his costume.

We didn’t go trick or treating but we did hand out lots of candy and Evan really liked seeing all the people come to the door. He was very interested when there was  a knock at the door and would crawl over to greet them. We have a great group of friends in the area and a bunch of us got together to celebrate Halloween. One 3 year old, two 2 year olds, and 6 kids under 2. They plan was to get all of them on the couch for  a group picture. Can you guess how well that turned out? Be sure to look at the pictures in the gallery at the bottom to see the progression of Evan’s meltdown.

Evan’s hair is getting long… he could probably use a haricut but for now I am enjoying the crazy bed head hair when he wakes up from a nap.

Here are a few videos and more pictures of Evan since we’ve been home. I hope you enjoy them as much as we do. 🙂

Evan Screams from William Wood on Vimeo.

Dancing Evan from William Wood on Vimeo.

Evan Wants More Tossing from William Wood on Vimeo.

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Just a really quick note to say that surgery is over and it went well. We’re already back to see him and he’s off the ventilator. They decided to put in the dual lead pacemaker…it senses what Evan’s atrium wants to do and paces his ventricle accordingly. 155 beats per minute! We are going to have or hands full.  I’ll post more later today.

Each time Evan is admitted to Mott Children’s hospital one of these is made to hang in his hospital room. We bring them home and hang them behind his door as a reminder of how precious life is and how strong Evan is. Tomorrow we’ll get another, let’s hope it’s the last one for a long time.

We have to be at the hospital at 630 a.m. It’s going to be another long day. Please keep Evan in your thoughts and prayers.