First of all, Jax saw his surgeon last week, and unfortunately had has some granulation tissue growing around his new tube. Basically his skin is trying to heal and close up the new hole. So, we had to burn the tissue in the office, which brought tears and me being upset for him. I hate this.
But, I won't linger on that right now.
I've been keeping tricimalone cream on it and it's been looking better. Jax goes back to the surgeon office in a week to have the tube changed out, which we're wondering if he needs a bigger/longer tube size which may be contributing to his pain, so we'll find out. Jax also sees his Endocrinologist that day as well for a followup. I'm assuming they weight/measure him, give a quick physical and increase his hGH dosage. I'm interested to see if he's hit 'their' height chart yet. I say this meaning they measure Jax accurately.
The boys had St Nick come on the 6th, and their school holiday concert that week. It was pretty freaking CUTE. They did a bunch of songs, poems and the boys each played the triangle. Come on. Im trying to soak it UP!
We traveled to Minnesota to see Jay's sister and her family for a holiday celebration. During the drive there I had a dry cough, and by the time we got there, I was pretty much sounding like a frog with a nasty throat that slowly but surely turned into a cold - BOO! Kinda put a damper on my energy, but what can ya do?
The boys were obsessed with their new toys and playing with their cousin Aidan. It's always nice to see family.
The boy's report cards for their first semester of first grade are in. They're 'graded' in numbers 1-4, with 4 being advanced. The reports are pretty good. Brady surprised us with being advanced in a few areas and had a pretty incredible report. Especially for a kid who has an IEP and just started speaking in sentences in the past year. He is definitely on his WAY. Jax's report had some tough hits with 2s, which means 'developing', but overall pretty positive. Our biggest issue is when Jax had 2s listed under the 'effort' area of subjects.
I had a long talk with the boys and went over their reports. I kept it positive, but really needed Jax to know that even though he has difficulties in a few areas, the MOST important grade was the 'effort' area. Because even if he can't accomplish a perfect grade in an area, if he TRIES his hardest, we will be just as proud. He got a little emotional when I said "I know it's hard for you and it's not your fault, but it doesn't mean you can't try your hardest". We talked about organization, effort and routine and applied to how they see me and Daddy go about our days, they seemed to understand it then. I really want to keep them feeling smart, because once a kid thinks they're not smart, I feel like it's a downward spiral. So far, so good I think.
I personally think Jax is starting to have a tougher and tougher time focusing and regulating his body to complete a task independently (or even aided) but Jay thinks it's the same as it's been. It will be interesting to see what the teacher thinks. I'm wondering when the heck parent conferences are!
Otherwise, we're back to the grind at home and getting ready for the rest of the plans. I have a small 'much overdue' house project going this week with replacing the boy's bathroom floor (good bye 25 yr old cracked out tiles!) and tomorrow night the boys have their annual holiday party at KidReach where Jax has his feeding therapy, then Jay's work Christmas party on Friday, then we have some servanthood through our church on Saturday to brighten some people's day, then the boys have their Christmas program at church on Sunday and then we start the week of Christmas! Don't ask our schedule that week, HA! So, pray for health of the boys so they can do all these fun things!
|This pic doesn't quite capture their excitment of St Nick surprises.|
|Quite possibly their favorite slippers ever! (Darth Vader and Minions)|
|A cute scene from Santina's birthday earlier in the month.|
|Brady being so helpful with filling up some boxes of toys to donate before getting any new ones this holiday.|
|Jax's new medical bracelet. We needed to update Jay's phone number on the back and I like to have his last name on it now that he's older. I like him wearing it when we go on long car rides in case of an accident.|
|The boy's ginger bread houses. They have different... styles.|
|Big B helping with food prep. I realized that my plastic cheese knife (LOVE this thing) is perfect for him to use.|
|B's project that was picked to be displayed in the hall during the holiday concert.|
|Jax wearing his elf hat and rocking the triangle during the concert.|
|Brady wore his Santa beard and rocking the triangle as well.|
|Of course the boys were on opposite sides of the room, so pics were tough.|
|A lunch stop in the Dells on our way to Minnesota. (classic Jax-face in photos lately...)|
|Brady with cousin Aidan.|
|At a very packed basketball game, the three boys snuck to the front to watch the game.|
|Anesah helping me out with Jax's nightly inhaler since I got sick and didn't want to touch Jax's breathing meds.|
|Aidan being a boss on the court|
|A lunch stop in the Dells again on the way home and a random monkey came by our table. Okay!|
|Stop the cuteness! We had some family photos and this one is SO cute!|