Catching up

Ethan had a parent-teacher conference last week. Apparently he is really coming out of his shell and participating in the classroom activities. I was really happy to hear this! He is doing his activities with minimal reminders to stay on track. He has also started raising his hand to answer questions! However, when he raises his hand he puts his hand in the air and yells "Me! Me! Me! Me!" We definitely need to work on calm ways to get the teacher's attention! Honestly, I'm just happy he's listening to the questions and wants to give an answer! In addition to answering questions, he volunteered to read a page out of a book in front of the class earlier that week! He stood up and read to everyone at circle time. I'm so excited! :)

He was tested per the state requirements and apparently did not do very well. The teacher was not happy with the way the tests had to be administered and did not think they were accurate and fair for his age. She also feels that he does not test well because a lot of the things he missed on the tests he is able to do at home and privately in class. We definitely need to work on his math skills and higher number recognition. He's behind in that, so we'll incorporate that into his tutoring and working at home. We've been so focused on practicing his reading that we've totally neglected math! Oh well, at least he's really loving to practice reading his books right now! His teacher is a bit concerned about how he's going to handle the work load next year. She says first grade is so much more intense than kindergarten so she's not sure how he'll do. We will need to discuss this at his upcoming IEP appointment to see how much additional help he'll need to make sure he doesn't fall behind. I know we're going to be fully using Common Core at the school next year and those concepts will probably be a huge struggle for Ethan. Hopefully we can figure out a way to help him understand and not become frustrated.

Another issue we discussed was Ethan's outbursts in class. We struggled a lot with this in preschool. Then things calmed down and he was extremely quiet once he started his ADHD medicine. His teacher always said he was perfect in class - sat silently and never made a noise. Now he's apparently making weird noises like saying "boop boop" repeatedly as the teacher's trying to teach or write something on the board. Another thing he's doing is randomly whistling in the middle of class. The teacher does not think that he's doing it on purpose or even is aware of the fact that he's doing it. She tells him to stop making noise and he'll stop for about an hour before starting up again. I don't know why he's suddenly doing this, but hopefully we can get it under control quickly! Other than that he seems to be doing pretty well in school and seems to be enjoying himself!

After such a long time waiting, we went to see The Lego Movie! We were all so excited and thought everything was awesome! LOL! Ethan thought it was hilarious and plans on having the basement from the movie in his house someday! :)

We have had plenty of snow days from school to relax and hang out around the house! The kids have loved it, and the weather finally cooperated enough to let them play OUTSIDE on their snow day last week! :)

Since the big boys were all out snowplowing, the kids and I were able to enjoy a movie and "Taco Tuesday" picnic in the living room.

Callie also had a really busy weekend! Saturday morning she participated in the Greater Cleveland Problem Solving Competition. Her math teacher was able to select the top four students from each team of teachers. Callie was one of the two selected from her class. Each school had a couple teams of four participate in this. Thankfully our school hosted the tournament that happened in our area. Around 200 students showed up from the various schools. Callie and her team spent their morning working on math problems. They had fun and did a great job! :) I'm definitely so proud of her academic accomplishments! :)

She also finally was presented with her trophy for winning the school science fair a while ago! I'm glad that's all done with! :)

Callie's been pretty busy with Girl Scout activities too! Last week they volunteered at a local church to serve the free community meal to those in need. I think the girls got a lot out of it and I hope they continue to volunteer there in the future. I know they return in a couple weeks for another night of serving.

Saturday night I took her to Southpark Mall for a Girl Scout lock-in! Around 2000 girls attended the lock-in and they had a blast! Some stores stayed open throughout the night for the girls to shop, activities were available for them to do, they watched the Muppet movie at the theatre, and had a giant dance party with a DJ! Callie had so much fun and can't wait to do it again next year! :) 

When I was drying Ethan off after his bath last night, I noticed he had some big bruises on his leg and arm. I asked him what happened and he didn't know, so of course I immediately worried about his INR level! We took out the INR testing machine and started to do the blood work. Well, we kept getting an error code when we inserted the test strips. We then realized that the strips expired a month ago! I couldn't believe it! These are not cheap - in fact they're $175 for a pack of 24. The entire 24 pack was useless. I could just scream. Fiona found the container of expired test strips and decided to eat them this morning. She is SO lucky that we knew they were already expired! I probably would have lost my mind if they were good strips!

Well, I guess it's time to order the next set. :/ Since we weren't able to get a reading on his levels, I had to take him into the lab this morning for a full blood draw. He definitely wasn't happy but he did SO well! The nurses there were excited to see him and all were shocked how big he was since the last time we were there! :) They always are so nice and make him feel special! We sat in the chair together for the test. While they were feeling his arm to find a good vein he said "I don't think I'm feeling very brave today". He was though because they poked him and had to maneuver the needle around 3 times before hitting his vein. He didn't cry once! I couldn't believe it! Of course he earned his bouncy ball as a prize afterwards, then we dropped him off at school. :)

I emailed the doctors and let them know what was going on. They let me know that his levels are great - he's at 1.8. That's actually a little low since our range was 2.0-2.5. But we're happy with it so nothing's going to change. :) Apparently he's just bruising from being his crazy little self lol! I was very relieved!

We're all dealing with some sort of cold in the house. We're all congested and crummy feeling, and Ethan of course still has his nasty cough. We're continuing with his breathing meds and hopefully we can get his lungs cleared up soon!

I think that pretty much sums it up. Now we're just finishing up goalie training with Callie, preparing for the start of the spring soccer season, school, girl scouts, and getting healthy. Please keep us all in your prayers and I'll keep you updated with any news!

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!

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