Monday, August 22, 2016

Winding down the season

We're down to the end of it... just over a week of summer left. The weather has been beautiful this year and we've enjoyed our time. I wasn't sure how this summer was going to with me being full time alone with the boys, but it's been great! Don't get me wrong, I need some adult conversation from time-to-time so I don't go crazy, but the boys have been fun.

Jax had his endocrinology follow-up and he's steadily shooting up into the 10th% and looking healthy! The doc kept his hGH at the same dosage, but said with his next growth in 6months he'll have to increase it. We're keeping him on a healthy growth curve with some catch up growth for sure. Side note, the doc examined Jax and took note that we've been looking for the ascending testicle off and on. The doc and I looked and there everything was, perfect as can be. I put my hands up and said, " I SWEAR we had problems finding it for the past month!"
He had to chuckle at that, and assured me that the hGH has nothing to do with it ascending from time-to-time and to rest assured that since we see it, it's healthy and normal to move up like that and with puberty it will all work itself out. So I'm glad I don't have to worry about THAT anymore for the time being! (seriously, wtf)

We popped over to the GI clinic (across the hall conveniently!) and did a weigh-in for the dietician. They can't use the Endo-weight, it has to be THEIR scale. I knew immediately that I'd get a call since Jax hasn't gained any weight at all since they saw him 3 months ago, but he grew, so it makes his weight percentage go down for BMI. Sure enough, I got a call 3 days later to discuss. They're happy he at least maintained his weight, but we reviewed the plan for school and we have our fingers crossed that the less summer activities and more structured school plan will give us some weight gain by his next weigh-in in October with the GI doc. I told the dietician that if he increased his night tube-feeding, I'd cry. I'm pretty sure that statement made me a bad mom, but I can't help to feel success/failure over that darn tube-usage sometimes! Good news is we stay the course and we'll check in in October.

We have an appointment set with a Neurologist in November to just review Jax's history, all these crazy hand placements in photos and a few other things. I have a feeling I know the doc will say it's all because of his birth/growth history and to stay the course with therapies, and that's okay. At least I'll know he was seen, reviewed and we're not missing anything. Can you tell I'm trying to pump myself up for that answer so I'm neither relieved or upset?

We had forms and fee day with pictures at school this past week. The boys got to see who they had for class, who would be IN their class, and to get signed up for all the various going-ons for school. They have open house next week to drop off their supplies, and to explore their classrooms, they're pretty excited!

So we finish up these next 10 days with the pool, the yard, a church picnic and a plan to finish our first novel of Harry Potter. Next up - first day of 2nd grade!

A cute summer photo of the boys. Of course Jax isn't interested in the actual cereal :)

My 37th birthday with some friends

This is an interested way to see Jax's muscle strength. Brady scurried up the wall on all sides and this was Jax just HANGING there on each side. It's interesting because Jax is athletically inclined, yet in this sort of way, he's unable to perform.

Great way to wake up on your birthday!

Jay sent me this photo while I was gone. This kid talked about winning these tickets for DAYS!

Annual WI State Fair Fun!

The difference between my boys in a mall. Jax is flying around in a cape and Brady is trying out clothes by dancing in a mirror ...

The boys asked me to tape them and send it to Jason. He got cut off from them while talking to them in an airport so they wanted to be sure he heard what they wanted to say... it's cute.

Jax at the Endo and growing like a weed!

Oh you boys... so excited to be tall enough for all the rides!

Gotta love it when your kid gets a goose egg on his head 2 days before school pics!

Big B on the pitcher's mound for fall ball.

Leaving swim lessons and going home to eat before baseball. I thought they looked so old while walking behind them...

We took Brady's trainers off and sure enough, he could ride his bike. We took a bunch of diggers but now he's got it. He said he didn't want to leave Jax behind as the only kid in trainers. Well, be-steal my heart buddy, but you can't live your life like that...

Birthday dinner with my handsome hubby
A rainy day drive out to IKEA on a  Sunday and Brady was PUMPED to finally get this Panda he's wanted for  so long. (sigh)

Tuesday, August 2, 2016

8 year physicals make my head spin!

We are into August! This is the month of slow-down for us, and yet, we still feel busy, go figure!

We had a weekend up in Manitowoc for the annual Kenny's softball tournament that Jason is in. We were able to spend the weekend with Jay's sister and her family before they were off to Texas to move, so it was nice to have time with them knowing we won't see them as much.

Our days are now filled with 'fall ball' baseball practices where the boys are getting a taste of kid-pitching-batting. Brady pitched last night for the first time and he did amazing! He struck out the last two batters! I think he may be going down the road of pitching :)

They're still working with their swim instructor each week and we're seeing some improvements, although Jax is displaying some issues that he has when in the classroom. He loses interest and becomes tough to work with.

Jax is doing well with his summer-feeding-therapy. He's still working on spitting, which is coming along, but it's messy. He's also starting to learn how to drink from a bubbler/water fountain (whatever word y'all like to use). It's oral motor functions like these, that we all take for granted. It still surprises me often how hard these things are for this kiddo. We've just had a lot of STRAWS and open cups all this time :)

The boys had their 8 year old physicals as well, and Jax is REALLY catching up to Brady! I know the pediatrician's measurements aren't always as 'exact' as the GI clinic or the Endocrinology clinic, but per the pediatrician, the boys weigh the exact same (45.5 lbs) which means Jax has lost a little, but we have an Endo checkup next week, so maybe he'll get some better numbers. Their heights were only 1/4" apart too! 48" gets them to the 15-20%, but their weight is around 5-10%, which, is obvious when looking at them :)
So, the great news is that Jax is getting close to Brady's measurements, but the realistic news is that it still takes nightly tube-feedings and hGH injections to get there, but hey, we'll take it. I have a feeling that the GI doc will be bummed to see Jax's weigh-in next week since we were expecting him to possibly start removing a portion of his nightly tube-feedings, which isn't going to happen. BUT, this seems to be what Jax does in the summer months with all the extra physical activity.

The doc definitely found all the photos of Jax's hand placement interesting. She said it could be nothing more than a 'tic' of his, or it could be a symptom of mild CP. Theres no way for her to know. We're supposed to gently remind him to put his hand in his pocket or behind his back when taking photos to try and help him avoid the embarrassment.
She did think that we already saw a Neurologist in the past, but we didn't, so she said that if we still notice this a lot going forward, or other things, we can always go see someone. She did a complete motor function test on him, which we knew would be ok, but she didn't like to hear how tired Jax gets with walking and mentioned possibly getting into PT again. The problem with PT at school is that Jax would have to show an issue with his motor function in regards to academics, which I can't see happening. He gets occupational therapy for his fine motor deficit since it affects his writing, which is academic (see my point?). So.. there's that whole looming topic that I'm not sure where to go with, or what to push and what not to push... I did notice that when he runs in baseball, his arms are straight for balance, instead of bent like we all do when running... little things are starting to bug me now...

The doc asked if he still got modifications in school for his focus and attention. I kind of chuckled like it was so obvious and then realized she considered that a flag at the age of 8. I just assumed when a kiddo had these issues, they just always had those issues. She said the ages of 4 and 8 are markers for her. So when he had these issues at 4, we saw a Child Development Team to see if we could identify early issue to help. The boys were given the official Dx of Speech Apraxia at that time, which was really helpful in the years following for speech therapy. They didn't see any further official Dx's, but gave suggestions for school modifications, which were used.

I guess now 4 years later, if those modifications are still being used, the child should be re-seen. Ok, I get it! So, the doc will be letting me know if we will start the whole Child Development Team process again (which is a few-month process) or if she just wants Jax to see a Neuro Psych to get a better understanding of how his brain functions in relation to his IQ. Like, why can he read almost 2 grade levels above but struggle with spelling? There's a disconnect and she just wants to better understand how his brain is working so we can get him on a good learning path. So, we're waiting for all that to start.

Then, I found out there was an issue physically that I had NO idea about. Ohhh boy. The doc couldn't find one of Jax's testicles during her exam. She re-evaluated many times looking for it, but Jax was super uncomfortable, so we never found it. I was told to look for it (OMG WHERE DO THEY GO?) over the next week and let her know. Well, when we were in Manitowoc for the weekend, Jay's mom found it after a warm bath, so Jax had Jay's sister call us and Face Time listening to Jax yell, "I FOUND MY BALL!"....

So, it's been found. Although its location is odd and not where it's supposed to be, so we're supposed to watch it and most likely go see a Urologist about it at some point too. LOVELY!

Did I mention that Brady's physical had none of this drama?? LOL. He's skinny and on his typical growth curve without incident. I'm supposed to keep up with the extra calories where I can, but otherwise, he's GREAT and the doc was shocked to see that he hadn't been in her office since the last physical! He gets speech daily at school, so he's supported well and not having issues with anything academic, so his portion of the physical was a breath of fresh air. Whew!

Some of the gang out Saturday night

Lunch with Grandpa Lettenberger

The boys made themselves at home in the announcer's box.

Jason had some fun back on the field

Jax and Jay hanging out watching some games.

Seeing Aidan and Anesah off to the airport on their way to Texas.

We took the boys to lunch and some mini-bowling that afternoon. Because why not?

I made the boys clean out half of their playroom to donate toys... half still to go.

Some froyo with the neighbors one random afternoon

Pool days make me realize I still have 'little boys'

Although, Brady is sure to read all the rules very carefully.

While this kid sits and plays with toys.

And Brady watches... come on, it's kind of funny. I hope they go to college together so Brady can watch over Jax :)

I LOVE moments like this. Brady laid on my bed and talked my ear off about life as I was putting on makeup.

The boys came at me needing new batteries and I laughed so hard that they had these old hats on. Oh these boys...
Brady practicing his pitching.