Ethan's Journey

It's Congenital Heart Defect Awareness week! Even though I wanted to do a LOT for it this year to raise awareness and support research, once again I failed at that. I did however update his CHD awareness video! Yay me! :) Here it is if you haven't already seen it on Facebook, or if you just want to watch it again. Make sure your volume is up because there's music that goes along with it.

I have just a couple other updates from this week.

Ethan had an great day on Tuesday! I picked him up from school a little early because he had his sleep doctor appointment downtown. Since he's in Kindergarten, the school has a child bring a buddy down to the office so they don't get lost and start wandering the halls. Ethan has walked down with random boys from his class throughout this year - I have to get him from school pretty often due to his appointments. I always ask him who brought him down and he never knows the kids' names. They also walk down the hall like they don't know the other kid is there. Ethan doesn't look at him or acknowledge him in any way. Tuesday however, I was shocked when I saw Ethan walking toward the office with a girl on each side of him - HOLDING HANDS! I could have cried. I wanted to take a picture, but there were other parents in the office and I didn't want them to think I was some weirdo taking pictures of their kids (if one of the girls belonged to them). :/ I was so happy though! When they let go of hands in the office, I told Ethan to say bye to them. He did! On our way out to the car I asked who the girls were and he knew one of their names! I know this may not sound like much to most parents, but Ethan has never told me the name of ANY child in his class. I assume it's because he never interacts with them enough to learn their names. This made me so happy! :)

The appointment also went really well. Ethan was in a VERY cheerful mood, which we don't see a lot so that was awesome! He was laughing and very talkative! He spoke to the nurses in the office, looked at the doctors when they were talking and responded to them, and even interrupted me when I answered questions for him! It was like a completely different child! :) He even sang along with our entire bedtime song!Either way, I hope we see more and more of those days. It was really great to see him so happy and comfortable. I don't know what brought it out, but it was great!

The doctors did not want to increase his melatonin even though it's still a 50/50 shot as to whether he'll go to sleep easily at night. I do have to say it's getting better and better, so hopefully we'll just continue to improve. He's extremely sensitive to his pre-sleep schedule, so I know that usually as long as we keep that perfectly he should do well. It gets hard especially in the summer since Callie has activities in the evening and that would completely mess up his schedule. He's supposed to sit in a darkened area with no stimuli - no TV, no movies, no electronics whatsoever. He basically just colors at the kitchen table with the light off for at least an hour and a half before bed. I don't know how that will work in the midst of soccer practices and evening softball games - as well as the sun being up later at night! We'll see how things go.

Tomorrow I have a conference at Ethan's school. Hopefully I can hear that progress is being made and he's doing well. He brought home another "Shining Star" on Tuesday as well, so hopefully that means he's behaving himself and doing well in school. I know he's really doing well with his reading at home. He reads a story every night to me - either a "Bob" book or "Dick and Jane". He thinks they're hilarious and he's reading almost all the words by himself! He's making huge strides and I hope things continue to improve! :)

Ethan was invited to a birthday party for a boy in his class. Even though I tried to convince him that it would be fun to go, Ethan keeps insisting that he's going to be sick that day. I didn't want to push him into going and stress him out about the socialization, so hopefully he'll have another chance when he's older and maybe more comfortable in those settings. Callie finishes up her basketball season this weekend and has big plans for next weekend. I'll post about that when it's over! :)

We had a new baby cousin born into the family (Luke) this week. He is currently in NICU, but doing much better now. Please pray that he continues to improve and can go home very soon! :) Also we just found out that one of Ethan's heterotaxy friends is in the hospital with RSV. Please keep Vivi in your prayers that she feels better and can go home soon! Thanks for all your prayers and support!

Make a video - it's fun, easy and free!
www.onetruemedia.com