Monday, December 19, 2016

Holiday Break Horizon

We are in full swing of our holiday season - and a full swing countdown each morning until Christmas as well. The boys are still at such a fun age for the holidays. They're filled with so much magic and understand the true meaning in addition to Santa :)

We're gearing up for a nice little holiday break together and hope to get a lot of family time in before the 2017 begins and we start our busy new year. Jay and I are thinking up some fun days and in addition to our typical tour on Christmas Eve and Christmas day, we also have a New Years weekend out of town with the boys at a lodge for a wedding - they are going to love it all!

Enjoy your end-of-year festivities. We send our love and hope for the best health and happiness!

Brady is always my cookie helper!

Jay and I having a little fun in the capital a couple weekends ago

Birthday party shenanigans for a classmate

Augustus the tax collector and a narrating shepherd in the Nativity Story at church


The Nativity story gang
Cool gifts from Jax's feeding therapist. It's Christmas all month long!






Friday, December 9, 2016

A Way To Live Your Life

We have been on this journey with the boys for over 8 years now. Longer if you count from the moment the perinatologist told us the boys were inside the same amnio sac and that there would definitely be "problems if they made it". Well, they made it and we've been on quite the ride as you can tell by the almost 1,000 posts on this blog from over the years.

I planned on having Jax see a neurologist as a final closure appointment. I assumed the doc would look him over and tell me that 'it is what it is' and we're doing all we can and send us on our way. I set this appointment up months ago after meeting with the pediatrician at the yearly physical in August stating there were a few symptoms bothering me. She thought we already saw a neurologist, and after I got home that day, I looked back in this blog and realized that he did for a specific issue, but not a comprehensive exam. (Long story)
Anyway, we did go see a neurologist for a comprehensive exam last month and after a review of past and present issues, a physical exam and viewing of dozens of photos that I brought along, the neurologist went to get another neurologist to come in and do the entire thing over again. My quick appointment ended up being hours long.

The doctors sat me down and said that the brain bleed that Jaxon had at birth is what's affecting his body. This 'stroke' was caused by the lack of blood flow and oxygen during the perinatal time - either the weeks leading up to or at birth. We knew he was struggling to grow and develop because of his knotted cord, which was why I was in the hospital for those two months. We knew he didn't breathe for at least the first 7 minutes of life because of his apgar scores during the crash c-section to get him out to resuscitate him. And we did know he had a brain bleed that 'resolved on its own'. The problem here, was that we took the term 'resolved on its own' to mean it didn't do any damage and we could move our worries onto the dozens of other issues we were facing with two preemies in the NICU.

Apparently, 'resolve on its own' means there was no need for surgical intervention, but the stroke happened and it left a lesion. The grade of the bleed was a 1, so the chances of it causing issues was low, but you don't know until the child is older - which I also didn't know these things were diagnosed later in childhood. With a child like Jax, many of his issues were attributed to his very low birth weight preemie status. Jax had an MRI a few weeks ago to confirm the area and type of damage since birth.

The final diagnoses given are mild HIE (Hypoxic-Ischemic Encephalopathy) and Congenital Hemiplegia. The lack of blood flow and oxygen caused the HIE, which caused the stroke (IVH - brain bleed), which then caused the hemiplegia. Hemiplegia (or Hemiparesis) means that one half of his motor control has been affected by the brain injury - his right side and obviously his face/throat/GI system. This is under the umbrella category of Mild CP.

In hindsight, the pieces of his history make sense to get these sort of answers. He had torticolis and couldn't hold his head up while it was bent to the right side. He only used his left hand to grab items, he was still not walking, talking or eating at the age of two. We got him into orthotic ankle braces and he used them until the age of 6 to help keep him steady and straighten out his walking-gate. His lung disease and constant vomiting for years. And although he's had improved global development through the years with countless therapies, we see new things pop up as he ages.
Now that he's older and school aged, he requires an IEP for special ed services, which keep increasing each year and now with the recent diagnosis of ADHD and the learning disorder of Dysgraphia looming on us, the docs are really taking notice.

But beyond all that and then some, our greatest fight has been Jax's oral motor control issues with eating. While he can eat, since the age of 4, he can't eat long enough. He has some good days, some bad days, but mostly just ok-days. His typical meals consist of a few bites and then he drinks his nutrition (Pediasmart) and then gets a supplemental feed through his feeding tube while he sleeps each night. He has improved greatly over the years, but the process has slowed and it's creeping along. He still has very little desire to eat, which makes it tough as well. He's been in private feeding therapy his entire life for more than just eating. He's been trying to learn how to spit and how to handle a tooth brush all the way back or to use his tongue correctly and drink from water fountains.

The most common question that people ask Jason and I is if and when he'll get his tube out. We never imagined he'd still have it to this day, so we've accepted the new answer of, "we hope, some day".

He's been referred to the Rehab clinic at the hospital where they'll assess him for any needs they may be able to help with. I'm hoping for some help with his endurance issues that prove troublesome when walking while on vacation or a long sports game. He's very aware of his right hand placement now (called Flexor Posturing) and he's been holding his hands together or using pockets for photos now. The rehab clinic will be the ones who place the exact type of CP, so our journey will continue for awhile.

We've been processing this over the past few months. While these are just answers, it has been bitter sweet. We've dreamed of answers for years and it almost feels that when we've accepted to not receive any, they've suddenly flooded in. Jax has been a force of nature in our world. He is a daily reminder of how blessed we are. He has his mind and mobility and while not everything on his body works easily or perfectly, he certainly lives an amazing happy life - what more can we ask for?

I would be lying if I said it hasn't been hard to accept this permanent answer. I can say through experience that taking the time to process, and allowing the tears and prayers to take over for awhile, allows acceptance and strength to come. We're right in in the middle of that somewhere. I'm looking for my grace.


“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”     -Albert Einstein








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!


Friday, October 7, 2016

Family

I swear the weeks are just flying by lately.

The boys received their first bibles at church a couple weeks ago. They're a children's version, so they can read them easier. Brady has been reading from it a few nights a week, he really likes the stories in 'Luke'.
We spent 3 nights back home last week for a wedding for my cousin. My brother and aunt/uncle flew in, so we had a lot of family together. Another uncle flies in next weekend for my grandma's 80th birthday, so we'll have another day with family coming up.

Jax is currently in the evaluation-process with the Neuropsychologist. Jay and I had an interview with the doctor and she got to meet Jax. He will have a full day of testing this coming Tuesday and we should have results at a meeting set for the 25th of this month. I've been digging back for school reports/IEPs and had tons of paperwork completed from Jax's teachers, myself and also signed off for medical records to be reviewed. We know Jax has a lot of struggles and accommodations at school, but if any of it is actually part of a clinical diagnosis is yet to be seen. Jay and I agreed that if something is found or not, we at least know we have done everything to try and help.

In other news, our world is coming to a halt. Jay and I were going to attend a gala in Madison this weekend for children with special needs, but unfortunately there's a crisis happening in his family this week. One of Jay's aunts had a stroke last week and was hospitalized. While there, they realized she has terminal lung cancer and was put into hospice pretty immediate. We got the call while driving home from Green Bay last weekend, so we turned around and went straight to the hospital to see her. Thankfully she was able to see the boys and we were able to talk with her.  Jason has gone back up today to see her again and to offer support to his cousin. Please pray for the family in this difficult time. It's an extremely helpless feeling...



Jay's cousin and his wife visited for a night while playing a charity softball tournament.

Brady refused a photo for some reason.

But as usual, Jax was loud and proud!

My cousin's wedding

My brother is pretty much like the boys...
My brother and niece!

Brunch with some family on the way out of town.

These kids...



These boys...

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!