Monday, March 27, 2017

Bus woes

We're into the last week of March.

The boy's IEP meetings went well. Brady is 80% intelligible to an unknown listener and Jax is at 90%. They basically sound like Bostonians with a 'wicked eastern accent'. They're definitely progressing!

Jax's IEP is still pretty intense with a lot of intervention now that writing is becoming more and more extensive. Even his test taking has to have accommodations. We didn't realize he was taking all his state testing separately with his special ed teacher prompting him through to stay on task and to help with his writing.

His focus and attention is probably at the same level it's been, but the expectations are picking up, so that's why his needs for accommodations seems to be getting bigger. He'll also need to keep an aide at lunch and continue with OT, speech, writing, spelling and class/testing accommodations. The team is great and make the process pretty painless for us since they're so involved and give all the suggestions. When we reviewed Jax's new medical diagnoses this year to be added to the document, I was able to get through it without choking up, so I feel like my acceptance-processing has come pretty far. But one of his therapists teared up, so we almost made it through :) But of course, his happy and funny spirit make it easier to move on from bumming too long.

We had a little bit of a bus-issue last week. Jax came off the bus with a red face, which was a clue that something upset him. Apparently, there were two boys (4th grader and a 1st grader) playing with a ball, and Jax tried to intercept it since balls aren't allowed. The 4th grader shoved him face first to the floor of the bus and then both the boys proceeded to kick him while he was down. Brady ran to the driver, who then pulled over to break it up. After Jax took his hat off, I could see a red bump with skid marks. Ohhhhh I was so upset. They told me that it was a boy who lived close by us... I immediately contacted Jay and wanted him to come home and go over to the house with me to talk to the parents. Thankfully, he was in a meeting, so he couldn't come home and deal with my insanity.

I emailed the principal and Jax's teacher giving the information that the boys gave me, including a picture of Jax's head. Thankfully, the principal took complete care of it and the bus driver made reports with details as well. Jason spoke to the bus driver in the morning who profusely apologized, but obviously it wasn't her fault.

In the end, the parents of the boys met with the principal at school, and the 4th grader was suspended from the bus (I'm not sure how long, but he hasn't been on there since). His father - who I found out is a doctor, and was upset by the photo knowing how badly a child could be hurt in that situation -  wanted his son to personally apologize to Jax with the principal, which happened a few days ago.
I found it interesting that the principal told me that after the 4th grader apologized, Jax said, "that's ok". The principal intervened and said "No, Jax it's not ok. It's never ok to be attacked. You can say that you accept the apology, but not that it's ok".
Dang... she has wisdom. Our principal is retiring after 51 years in the district this spring, and she'll be MISSED!

A visit from Nana and a movie/pancake night

Bucks suite with some clients

Jax and Brady doing a birthday shout out to the Bonin twins

Brady and I practicing cursive during a bagel shop stop.

St Pats day fun.

Found these tiny things during a closet clean out!

My fish during weekly swim lessons.

The bus incident bump.

Beauty and the Beast - was good!

Dude-central during March Madness in our house.

Not fun. A skin biopsy on my nose. Good news, it was negative - whew! Sunblock... wear it.

Sunday, March 12, 2017

Wrapping up a sport season and some illness!

We wrapped up the basketball season, got hit with some viruses, and had some fun!
I've decided that no matter what time of year it is, we're busy busy. But I certainly don't miss the sicky times that haunts everything.

The boys were able to go onto the court at a Bucks game and stand with the players during the anthem as part of their basketball league. That was a fun night for them, although it ended up being WAY too late for Jax. He handle 9pm, and even 10pm, but 11pm... I just wait for his system to drop.

Sure enough, Jax started a slight runny nose with a cough that would.not.quit. After two nights of being up with him, his pulse ox suddenly showing me numbers that indicated he wasn't keeping up anymore. His pediatrician didn't have openings that day until at the end of the day, so I ran Jax into an urgent care. Which had a 2 hour wait, so then I ran him to another pediatric urgent care since I didn't want him sitting in a waiting room around other germs (and I knew his issue was really asthma and not some infection).

We were able to get in right away at my second stop and the doc confirmed that there was no movement in his lungs, so they gave him a breathing treatment of a different type of albuterol (starts with an X). They were able to confirm the absence of pneumonia (which I told them wasn't on my radar since he wasn't fevering) but he wasn't holding his own with his lungs for sure. He was put on prednisone for a week and we saw a difference right away. I do NOT miss that runaround, so I'm thankful that this scene doesn't play out often at all anymore.

The bummer news is that this doc had me go back UP to his higher dose of daily preventative, which we were hoping to continue coming down on. Jax has a followup with his asthma specialist in a few weeks, so it will be interesting to see what he thinks about it all. The good news is that there was no hospitalization, no ER and no emergency. But I was still exhausted and ended up slightly frazzled. I swear I get PTSD triggers sometimes, because my anxiety flies randomly over these things.

Jax also saw his Endocrinologist last week for his 6 month checkup. He's growing nicely, and from the look of the curve, it looked like he was around 15% on the height chart! He's a whopping 49.5", but at a mere 48lbs, which is like, 5% for weight... blah. Gotta get that weight going, but with a small increase in his hGH injections, it may help his weight a bit too. Jax sees his GI/dietician team in mid-May, so I'm going to swing him by for a weight check and dietician call when we're at the hospital in April for another appointment. I tried to get him in after his endocrine-appointment last week, but their office was closed by the time we headed over there. I think it's just time to go back to stuffing extra calories again since I'd prefer to not add more formula to his tube-feeding.

We had some cute elementary school things happen. The boys had their 2nd grade musical concert, their listening conferences where they present all the things they've been working on in school, and we're getting ready for both of their IEP meetings coming up in the next two weeks. Making plans for third grade... wow, where does the time go?

Jax's listening conference

Brady's listening conference

On the court during the anthem during a Buck's game

Last basketball game

Jay's hair got so long, that I clipped it up during some homework! He did NOT like that...

Doing some hamstring stretches while waiting for the bus

Brady at Sunday baseball practice

Brady helped make a cake!

Brady loving his soup during our dinner date (during Jax's feeding therapy)

I don't miss these scenes!

Building altars in Sunday school - boy team

Jax doing his duet

Sunday, February 19, 2017

Maybe coincidence, maybe not??

We are here and all is good. I've been meaning to pop in for an update every single day for two weeks!

The boys are doing pretty well. The only drama that has sprung up, was a phone call that I received from the school last Friday while I was in Madison. We had an awards banquet to attend, so we were out of town and had Jay's parents driving in to stay with the kids. But of course, you know those 3 hours of no one in town is when a phone call happens. I was told that Brady's eye suddenly sprung a case of pink eye and that I needed to come get him. OY. I said that I needed to call my neighbor to come grab him. As soon as the nurse heard this, she said, "NOPE, I'll instruct him how to handle the next couple hours and take care of him, this is no reason to call the emergency backup!". Oh my gosh, I love that woman.
So, I called our nurse and she had the doc call in some drops so they could start them on him right after school. Which they did. Although he was so miserable by Saturday that we kept him out of his basketball game and he transferred it to the other eye of course. By Sunday morning he said his ear hurt too, so Jay took him into an urgent care while I took Jax to church. Neither boy have seen the doc for any illness this fall/winter, so I'd say it was a pretty good run. Jax sees all his specialists, but no pediatrician appointments (KNOCK ON WOOD), so it's been fabulous!!
As for Brady, the doc said that his ear is red, but without a fever, we're assuming it's irritated from the eye infection and causing pain, so we're going the ibuprofen route with the eye drops and assume he'll clear up fine. Which I'm really hoping for because I'd rather stay away from antibiotics if possible.

I also started Brady back up on his nasal allergy spray wondering if that's adding to his facial-hell as well. My allergies are kicked up and his are worse than mine, so I think we're starting it a few weeks early this year - oh my gosh, this SPRING WEATHER this week has been wonderful! But I'm hearing that it's causing illness in people too, so let's keep that out!

In Jax-news, I have a pretty great update. He's started physical therapy as well as using his new shoes and inserts more regularly. Now... maybe it's coincidence, but wow... he played amazing basketball with 10 points and Jason said he was great at indoor baseball practice on Sunday. I can't help but wonder if the physical therapy is helping him use his body a bit better. The therapist really works him out hard and also mentioned trying out "kinesio tape" on him too. I guess it's a type of athletic therapy tape that stays on for long periods to help muscles. I'm interested to see if we try it tomorrow in therapy and implement it into his life. I need to read up on it to understand how it works.

It's been a whirling couple of weeks. Jason and I were in St Thomas for a few days with some Mass Mutual WI agency associates. Miss Gina looked after the boys at home - they had a blast, we had a great time, it was fabulous all around. Then we had the Buddy Bench come in that we ordered last spring. The kid's school had a "kindness assembly" which we attended to present it. Mike and Mindy came in support and as reps from Sherrer Construction Company who sponsors the program and the day turned out GREAT.

We're entering the season of teacher conferences and I've already gotten notice for Brady's 3rd grade IEP for next month. I'm sure Jax's will be around the corner too. I know for sure that Brady's will continue to only be for speech therapy. Jax's will most likely continue to be pretty comprehensive, but overall, he's doing great. He's so sharp with his vocabulary and 'random known facts' that it's almost like it's always a reminder that what he struggles with is really a disconnect with neuro-based dysgraphia/ADHD. But he's definitely doing well with such great school support.

Buddy Bench!

Nana and Papa surprised the boys at a game
St Thomas

The boy's have iPad homework once a week from school

Bus stop shenanigans

Jax was on fire and here he is about to shoot a bucket!

Jason's awards banquet - Agent of the Year!

Watching Brady write out Valentines will never get old.

The boy's enjoying one of Jax's rewards for a month of morning-chart-completion!

Bubbs loves ordering our food at Panera when we have our dinner dates during Jax's feeding therapy each week.