Tuesday, October 13, 2015

I pressed "PUBLISH" this time...

Have you ever gone to text a friend and realize that the last text you wrote them didn't post? Yeah, I just did that today with my blog! For some reason I hit SAVE and not PUBLISH on my post from last week!
Well, it was short and sweet anyway. Ce la vie!

We're still trucking along here. The boys are loving school. I can tell already that it will still be a challenge this year for them to remember all their belongings when they come home each day. I'm dreading all the extra outerwear they'll have to account for soon.
The kids are still loving Sunday school and Jay signed the up for winter basketball. I really wanted them in swimming over the fall and winter, but the fall league was filled. I don't think they can handle swimming and basketball at the same time as school - during cold/flu season - so we'll see when swimming can be added.

We had family photos done last weekend, and crazy enough, got them back already. Wow, that makes my holiday card and picture orders easier to accomplish ahead of time at leisure.

Jax has a follow-up with his new GI Specialist and dietician tomorrow. He'll have his stoma reviewed to see if we can just continue to leave it with all the prolapse still sticking out. Also, he needs a weight check with the dietician. I think he's gaining weight, but his muscle tone is low, so he always seems gaunt to me. 

He was really struggling to eat again lately, so we put him on his hunger-inducing meds for the past two weeks and it worked nicely. He's on his week-off right now, so we're hoping it's not total non-stop lectures to eat again. 

He sees the Endocrinologist in two months for his end-of-year checkup and I'm really interested to talk to the doc about some suspicions I've had. Or more like, a curiosity to a particular disorder that may or may not pertain to Jax. We're still going on the fact that all his issues are due to being a mono/mono twin who had his blood flow cut off resulting in being underdeveloped. I get that... but we're at 7 years old and he's still uninterested in food. I don't know, maybe that's normal. There's not a ton of research that dates back too far since tube-kids never used to walk among us and live normal lives and actually come off them, so this is all rather 'new' pediatric  ground to tread. 
I also know I'm having the dreaded 'helicopter medical mama' creep back in with cold/flu season swinging back around. I was doing great until the "incident" last January happened - gah, it makes me itchy thinking about it.

Brady is doing well, and getting better each day with his speech. He still has to trip through sentences and sometimes he'll get stuck on a word and try to say it over and over and over and then suddenly give up. We have to push him to go ahead and keep trying. We definitely still have times when it takes quite awhile to know what word he's trying to say, especially as his language matures and the words aren't as common, but there's always improvement. 

He asked me once why it's so hard for him to talk and I said that sometimes there's no 'reason' for good or bad things that happen like that. We all have to live with the hand we're dealt, so what really matters is how we deal with it. I told him everyone has a challenge, you just can't always see it. One day it won't be a challenge anymore, but he will have learned a valuable lesson on how to overcome challenges. He smiled, but I know he still thought it was a bum deal :) Yes buddy, it is, but he has no idea how blessed he was with that fabulous little FACE - he steals my heart...




The boys have been reading full books to me a lot lately - so fun!

Let's stop what we're doing and pet this fuzzy caterpillar! Then move it to safety.

Fun pjs from the neighbor boys who grew out of them!

Making some Lego People with Daddy as a reward for some good behavior when we had a full day of errands.

While Jay and I were watching the Packer game, I heard the boys playing out a scene in full characters.

This was the first time Jax let us spray whipped cream in his mouth! He was very cautious but got some!

This is hard to see, but one day after school I heard the boys talking about numbers. Turns out that Brady was helping Jax do one of his math homework lessons on the iPad. Too cute. Brady has exceeded his homework for this program by about 3 months (he is so organized and timely) but Jax needs 'reminders' to do it.

Brady seems to be growing up before my eyes this fall. He went upstairs after school one day and closed his bedroom door. After 15 minutes I wondered what he was doing. I found him under his covers reading by the light of his light saber.... he told me he needed privacy.

One more house project complete - new doors! No more ice coming in this year!



Once again, I find Brady reading his magazines and eating popcorn.. it's like he's going 13.

The boys dancing at their PTO Sock Hop.


Playing games

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