Tuesday, November 29, 2016

Holiday 2016 time!

We had a nice relaxing extended weekend for Thanksgiving. My mom came down to stay for a few days and brought her kitty, which had Brady in HEAVEN. We can't have a dog or cat live in the house permanently due to Jax's lung issues, but we can sure visit pets and have them visit for short periods (with the bedrooms closed). Although, I'm starting to think Jax may be starting to get closer to having strong enough lungs soon to live with a doggie, but time will tell.

My mom and I did a little Black Friday shopping while the boys went to do some indoor batting with Jason, then Jason and I got to run to the mall that night alone for a little shopping and a pizza date.
Jason and I attended a magical wedding Saturday evening while my mom and the boys went to see a play downtown at the Children's theater - very nice little weekend.

We now head into Advent season while getting ready for Christmas, and my dudes are over the moon filled with the holiday spirit. I just love their sweet hearts during this time.

We have a tough week or two ahead of us with Jax's MRI and the waiting for results, but I assure you, I will give a full update on everything we've been dealing with once I get all the information. We've had a few weeks of processing what we know so far, and I'll be better able to give a more 'matter of fact' post for you all then.
Until then, enjoy the shopping, wrapping, light-stringing, tree-trimming, card-mailing next couple of weeks!




Brady would not leave the poor kitty alone. He kept showing him where the bathroom was. Uhh, he's got it bud.

My elves hard at work. Most ornaments are on the bottom half, of course!

Going back to the school routine after a holiday break is the pits.

Thursday, November 17, 2016

A little more time

Since Halloween, we've had an eventful couple of weeks.
The boys had their Upward basketball league evaluations, and Brady actually did extremely well. I'm interested to see if he's different on the court this season. We are also gearing up for their big baseball season in spring by ordering our team clothes. Yes, "our", meaning the family since they're on this select team now. How official :)

We atteneded a joint-birthday party for Santina and Jameson a couple weekends ago and the boys had a blast exploring Rachel and Dennis' new home. Brady was excited to see that they've acquired a piano from their old neighbors and still insists he wants to start lessons. We're going to see if we can fit it in the schedule after the holidays since a woman in the neighborhood just so happens to be an instructor! Now to find a large keyboard to borrow until we know for sure he wants to stick with it...

Jax saw his asthma specialist and we're excited to see how well he's been doing, so we're going to continue his summer-protocol daily preventative and see how he does through the winter. If he does well, we may be able to lower him out of the class of meds he's on in the spring. Which would be amazing. He's on a daily long acting COPD inhaler and we'd love to cut the steroids down even more, so that's looking up. Cross your fingers he does well this winter again!
He's also still working hard on learning how to spit in his feeding therapy. He's working with a toothbrush and actually got a little toothpaste back out of this mouth this past week. He still has a way to go, but he's working hard on it.

We had a quick mini-session for family photos back up in Jay's hometown. We really lucked out with the fall weather this year as we head into winter and today is near 70 degrees with a sharp fall tomorrow night to the 30s. Who doesn't want to get sick just from that?!

In the news that I'm not quite ready to go over yet, is the neurology appointment that Jax had last week. I had myself convinced that it would be my closure to have a neurologist review his history, give an exam and tell me we're doing everything we can and send us on our way. And while it's not totally un-true that that is what happened, there was a 2.5 hr review and exam completed by two specialists and some diagnoses handed down along with the request of another MRI.

We are processing the information given to us as a family at this time and will share the information after the next round of testing and reviews are complete. The MRI is on Dec 1, and we should have some information a week after that. So, while I know this blog has been a documented journey of these lives, I just need a little more time on this one.


I loved that in the chaos of gift opening, Brady gave a posed smile.

And so did Santina!

Jax's student council activity this week with his buddy Randy at The Caring Place. They made orange turkeys!

Our life each morning now with my charts. While Jax doesn't do #4 yet, we're working our way up. And if he forgets something on his list to bring home, he does a chore to make it up. We haven't had a full week perfect yet, but we have goals :)


Bubbs

The elf

Monday, October 31, 2016

Neuropsych results

I'm way overdue, I know.
We've had some interesting past weeks just go by.

Jason lost his Aunt Sue suddenly to lung cancer earlier in the month. So sad for the entire family, and it shook things up for everyone.

My grandma had her 80th birthday party, so we've seen a lot of my side of the family lately between a recent wedding and the birthday. We've been back and forth between home towns and our home a lot the past few weeks.

The boys enjoyed an early morning of charter fishing on Lake Michigan, an autism walk for our friend Ethan, some baseball practices, swim lessons, a Green Bay Gamblers hockey game and some Halloween trick-or-treating. Jay and I had a quick weekend away in Florida to see friends and have a client review with Jason - so yes, it's been a busy October!

Jax finished up his testing with the Neuropsychologist a few weeks ago, and Jason and I met with the doctor for the results. He has been clinically diagnosed with ADHD (combined type), and he has every red flag for the learning disorder of Dysgraphia. He can't be diagnosed with Dysgraphia until mid-third grade, so we'll have him retested in that area next year if he's still having such struggles and being pulled out of the general classroom for those areas of writing and spelling. His biggest symptoms of Dysgraphia are his inability to put thought to paper for writing words or numbers, extremely bad penmanship with constantly forgetting how letters are shaped, all while having a higher than average reading level and a normal IQ. His writing and spelling are a kindergarten level and his reading is almost at a 4th grade level - see the massive disconnect?

He gets accommodations at school for all these areas already, so it was nice to have the Neuropsychologist review his IEP and tell us how well he's covered, and how unusual it is to have a school give such great accommodations pre-diagnosis.
The doc said his ADHD diagnosis was extremely clear cut without question. He struggles with going SO FAST with everything, and every small thing distracting his focus and attention.

We were given some ideas of how to help with the current issues at home and school and also given the names of some tutors to consider over the summer for Dysgraphia. I've laminated some charts for Jax to help with remembering his things from school each day and his morning routine to get out the door without 100 requests to get through every single step. I also have velcro under the kitchen table and I've sent some to school to go under Jax's desks. A sensory input for him to feel without holding onto something to distract him or ripping his fingers raw from fidgeting with them.

After sharing this information with Jax's school team, I received emails back of support and also some questions of how to further help him. His reading teacher needs ideas on how to slow down his reading and his math teacher asked if she could add an aide to scribe for him during math problems since he can do the math in his head, but he can't write it out - another Dysgraphia symptom coming out. So, it's nice to know there's so much support in that school.

We aren't going to explore medication at this time since Jax's behavior isn't impeding his academic-needs right now and the meds would suppress his already suppressed appetite - so no way. But I have no idea how to know what the future will or won't bring, so I'll always stay open to whatever is needed and best for this kid. For now, we have a bunch of natural options to explore, and tons of accommodations at school. We already do a lot of suggestions, which may be helping his behavior, so we will stay the course.

I feel an immediate defense of that subject matter since everyone tends to have such an opinion about it. I don't think opinions about it are always fair since no two kids or situations are alike, and no one else has the burden of decisions to affect the child's entire life or the environment for the rest of the family. But I guess you know what they say about people and opinions...

I'll admit... I'm totally over the non-stop constant life altering decisions for this little soul. It keeps me up at night. Did I read enough? Did I research enough options? Did I contact enough doctors? Did I communicate enough with all the people involved at school? Did I parent through the last over-tired meltdown right? Did I.. did I... did I...

((Sigh)) all we can do is love him! I'll admit that after a week to digest this info, I'm in a decent place about it all. We'll see a pediatric Neurologist next week to just review all his history with the neurological speech disorder, feeding disorder, ADHD, possible learning disorder and a few other small things. I don't assume anything will come of it, but I can go to bed at night knowing he was seen.

He's still happy, funny, charming, mostly sweet (HA) and has an awesomely amazing twin brother who may have a seat next to Jesus already with his name on it. Seriously, if you see Brady any time soon, give that kid a high five for just being such a selfless soul. He loves Jax so much, and he's already promised me to take him to college with him so he can watch over him :) Good night y'all.




Lake Michigan charter fishing

A random fall practice

Ethan's Autism Walk




Love these boys



One of grandma's celebrations

The boys watching some construction of the new Bucks stadium going up downtown

Quite a catch from our friend's back yard!