Hope

Hope

Thursday, September 22, 2016

Hello Fall!

We had our first 'back-to-school' germ hit us. Jax had a headache, high fever and sore throat, so he bought himself a day home (every first couple of weeks of school!). Jason got it a few days later and then Brady got it, which kept him (and me) home from the Badger game that we were supposed to go to the following weekend. But he was good for Sunday's activities. One of which was a fun day out at a pumpkin farm that Jason and his partner rented out before the season started, so it was a nice uncrowded day with a corn maze, petting farm, hay ride and pumpkins!

Today marks the first day of fall and our wedding anniversary. That means cold weather is on its way! We've got a busy fall planned, so I'm sure you'll get tons of fun pics over the next couple months!



Personalized gloves? Jason is in heaven...
Sunday fall baseball practice for spring (yes, that's a thing)

Jason sent me this one day. It's him. Driving tractor. Which broke down. Twice. He barely got home that night!
                                               

Jax reppin' big red

Farm day!

The farmer weighing the boys!



The M4 Family Farm Day!

I found something that Jax enjoys and will sit through - TYPING! It's long and not pretty, but he typed Brady's spelling words and seemed to,,, like it??

Saturday, September 10, 2016

In the swing of 2nd grade!

We finished up summer and started 2nd grade!

The boys have been loving school and we already had our first quick teacher conferences. They're called 'Listening Conferences' and they're for the teachers to just quickly touch base about the student and inform the teacher of anything we want for the school year to start. They went well, although during Jax's conference, the special need's teacher informed me that she'd be pulling Jax for more specialized instruction for the purpose of spelling, so Jax will not be participating in the class spelling tests. She believes he's memorizing the words for the test but there's no connection to applying the point of spelling for writing - there's a disconnect.

I agree that he needs this and I feel very fortunate that we have such an amazing school and staff who recognize these needs and try to help. But I have to say, it definitely gave me pause the past few days thinking about how much Jax is taken out of class for help. He gets pulled out for special writing instruction, occupational therapy, speech therapy and now spelling instruction. Obviously I take him to private feeding therapy after school once a week too, so that's a lot of 'specialized instruction/therapy' for this kiddo still happening at the age of 8. I was really hoping we'd be lessening instead of adding these things.

I called the pediatrician yesterday to let her know the school district has taken Jax out for his own spelling since she asked to be informed if special-education increased any further. The doc has decided to refer Jax to a Neuropsychologist at Childrens Hospital to go through some testing to see if we can find where the disconnect is for him with learning. He can read well above grade level (end of 3rd grade level!) but his writing and spelling is that of a pre-k to kindergartener, so something is off and it's getting worse instead of better. I have no idea how to help anymore than we are! I hope we can figure it out - I truly have no idea. I do plan to be a volunteer each week for math or reading, since I think it will be helpful when at home to see how this is being taught. I think it's good for the boys to see me value school so much... hey, I'll try anything!

The great news is that Jax is riding on TWO wheels for his bike now :) I cried. I'm so happy about it. He still has a lot of 'skill' and balance/breaking and pushing off to work on, but the big part of riding is pretty good!

The boys have been going to a lot of local high school football games this month, which they love all the different stadiums and kids.
We kick off Sunday school for the year this weekend, which I volunteered to start helping out as a Sunday School Teacher - EEEEEEK! Our church is pretty amazing and never ask for large commitments of anyone, so each time/grade has teams of teachers. I have two other team members that I split the year up with, so I'll probably be teaching about a dozen times total over 9 months. I can handle that! Oh my goodness though... who lets me do this stuff?? :)

The boys have had a handful of days back at school and the part-time-job-talks have already started to come my way from my old employer and a friend. Hmm... my full-time stay at home mom gig may be a shorter season of life than I thought! We shall see what shakes out... I swear, every time I'm not 'looking'!!


Last week of summer swim session!

Cuddle time in the basement with a friend!

Food fight outside for a birthday party

Laying outside during story time!

We finished the first Harry Potter in August!

This was their request on the last day of summer before school started.

Jax's last time with training wheels, taking his fox for a ride!

Brady and I stopped at Auntie Rache's house one night and had some play time


Open house at school the week before it started.


2nd grade photos came home already on the first day of school!
Our annual first day of school lunch with a little wine

First day of school!

This side-by-side is interesting to see Jax's growth in the past 2 years!

Success! Jax came home with the 2nd Harry Potter - readers are leaders!

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!"....

This.kid.kills.us.all.

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.