Ethan was very into Halloween this year - at least leading up to the actual trick-or-treating! He was so excited to be a "heart doctor" this year! Halloween was delayed a few days for us due to Hurricane Sandy. We had it the Sunday after Halloween - and still ran into some houses without power! The weather was SO cold though that Ethan only made it through one street before quitting and passing out candy instead! Callie had her eye on the prize though and lasted the entire evening LOL! She got more than enough candy for everyone to share!
Every year his preschool does a Halloween parade and trick-or-treating through the halls. The kids all love it and the parents are able to come and watch! Ethan had so much fun dressing up with all his friends, eating donuts, and showing me his classroom. :)
He showed me some drawings each kid in class made. They were supposed to draw something that described them. Most kids drew things like "my favorite food is strawberries", "I love to play with trucks", or "I have a dog". Ethan's picture is in the top left. It's "My hospital bed". :/ I didn't even know what to say when he showed me that! It was sad to see that that's what he thinks when he is trying to describe himself, but he seemed pleased with his picture so maybe it wasn't altogether a bad thing?! *sigh*
Ethan also brought home his school picture! He was so proud of it :) He walked in the door saying "Mommy's going to be SO excited!" Lol
We've also been able to enjoy lots of time outside playing in the leaves and enjoying the weather - well before this last storm that is! He loved the leaf pile this year!
We've also been busy finishing up Callie's fall soccer league. Her team had a pretty rough season this year after we lost our top three scorers from the past few seasons. Definitely an adjustment year! Callie played a lot more offense this year than strictly goalie, so she enjoyed having another aspect of the game. I think she likes offense even more than goalie! Thankfully with the terrible weather by the end of the season they moved her tournament indoors! YAY! The kids did well and had fun. I know she's already looking forward to next season - but of course we have basketball starting up in 2 weeks first!
Ethan's therapy has been going well and he seems to enjoy it. We do have to take a ton of breaks throughout his session because his oxygen levels keep dropping. We are trying to keep it in the 60s, but with each activity he drops to the 50s or 40s. Then we have to take a break, lay down and rest, and wait for his numbers to go back up. He still prefers the stop and rest over just wearing his oxygen for therapy though.
Speech is also going well at school. Speech day is his favorite day of the week! He loves going and doing the activities with his teacher (probably because they use the iPads). He even loves doing his speech homework! :) Hopefully he continues to improve in that area! The regular days of school are another issue though. Usually he's pretty good, but still would rather stay home and play instead of actually going to school. Today I got a call from his teacher after school talking about how he's not wanting to participate and doesn't feel the need to listen to his teachers. Lovely. When the teacher told Ethan that she's writing a note home to me about how he was behaving badly today, he replied "Oh I don't care." She was shocked since he usually goes with the flow at school. :( Needless to say we had a nice talk when he got home. He's in the mindset that all his life needs to be about is playing with his toys and drawing his pictures. He doesn't feel he should be bothered doing things he doesn't want to do if he doesn't feel like it. Well, that's not the way life works. He also knows that we have a conference after school tomorrow, so he had better be on his best behavior tomorrow! Here's his form sent home today - usually he's circled "happy" or "tired". This is his first ever (and hopefully last ever) "mad". I've never had to dread conferences with Callie before. These two kids are SO different from each other! Callie's conferences go like "Oh she has no problems." "I wish I had a whole class of Callies." "She's such a good girl and always does great work" yada yada yada. Not quite the ones I get with Ethan though... That better change! *sigh*
We are still working on maintaining his lower INR (thinness of his blood). Right now we are testing weekly - and unfortunately still having to do a full lab draw. We ran out of home test strips a few weeks ago. I found a website that allowed me to buy new strips at about half the cost of the pharmacy (they charge $38 per test strip), so that is a huge relief! I ordered his next box but they are taking a while to show up. We have another test due now, so hopefully the strips will come in today or tomorrow before we have to head back to the lab for another full draw. These past two blood tests have been VERY difficult -- needing to do MANY pokes and wiggles around in his arm to get his vein. It's awful for him. :(
We also had his audiology appointment this past week. It went really well! Ethan failed his hearing test at school in the beginning of the year. We were told to get a follow-up check at his audiologist. This check showed his hearing to be fine - same range as our last check there! YAY! That's a big relief! :)
Other than that we have no news. I'm still waiting to hear what's going to happen cardiology-wise. The last I heard from Dr. G was his plan to have another cath in a couple months. That was almost two months ago. I'm probably going to send him an email and see when we're coming back in - but hopefully it can wait until after all the holidays are done! The docs are usually really good about letting us wait until January or February for another procedure. They know we don't want to miss another Thanksgiving or Christmas being stuck in the hospital!
His burns are also slowly getting better. His butt burn doesn't seem to hurt at all anymore, but there is still a dark scar all across. That is getting a bit smaller, so hopefully it'll continue to improve and eventually go away?! I hope so! His head is starting to show a little bit of hair growth again (basically only visible through a dermatology magnifier). We started a steroid cream this week and will check again in a week to see if it's stimulating the hair growth. Hopefully we can get that growing so he doesn't have a big bald patch on the back of his head forever! :)
We are doing well and all getting over some nasty cold/respiratory bug these past couple weeks. Ethan is back to needing his breathing treatments thanks to this lovely bug. :( He's handling it well and hopefully we'll all continue to improve and he can get his lungs all cleared out completely.
I'll let you know when I hear some cardiology news, but otherwise things are going really well. Thanks for all your continued prayers and support!
Glad that things are going well and that the kdis enjoyed Halloween. Love Ethan's costume! So cute!! Praying you get news from the cardilogist soon on what the plan is!
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