Thursday, February 19, 2015

A long time coming

So it's been over a year since I posted on the blog and I'm not even really going to attempt to catch you up on all the goings on. 3 year olds are very busy and so are their parents so I make no excuses, but thought it was time for an update.

We have had a wonderful, challenging, busy and adventurous and long awaited 3rd trip around the sun.

The wonderful:

At my niece's wedding on the family farm, a perfect place for them to find a world full of wonder! 
These boys are truly that: full of wonder at every turn. I answer (or try to answer) more questions in a day than I ever did with a 150 children a day walking through my classsroom. Oscar needs every detail to be satisfied, Mylo's imagination will fill in any detail that doesn't have an answer and Victor needs to confirm the "color" and "how many" of whatever it is we are looking at.

The Challeging:

They sure are cute, but it sure isn't easy
They are 3, enough said....These boys may be full of wonder, but they are also full of opinions and not so full of patience. We know what we want and we want it now no matter whose hand it will be pulled from and in whatever manner it might be taken (use your imagination-it's certainly not pretty). We are also pretty determined that 100% of mom or dad's attention belongs to me and only me and any given time. If I sit on the floor they battle it out to "get the middle mommy" or the center space on mom's lap until I declare the middle mommy is going to stand up and go get a cup of coffee and they will be stuck sitting on the floor.

The busy:

Celebrating our 3rd birthday at Created To Grow
They are on the go, go, go and so is our schedule so we made a major life shift this year. I took a leave of absence from teaching at Columbia Heights with tears in my eyes as this community has been a huge part of my last decade and will be again when the boys are in kindergarten but as the year wrapped up and I was heading to one of Victor's appointments for therapy at least twice a week, on top of meeting dates, and art shows and all else, I barely spent any time with the other 2 kiddos during the week and it was killing me to balance it all. I felt both school and home suffering and it was time for a change. I started a little business called Created to Grow, a family art center offering arts classes and art parties and am excited to see it growing. It has been terrifying to start something so big in the midst of what we had going on, but it has been the perfect fit in allowing me the time to keep the artist and teacher that is in my soul alive with a schedule that allows me to get to all the appointments.

I also knew that this year would hold the added stresses of the boys being more exposed to germs for the first time with caregivers outside our family and Victor starting preschool. We have been very grateful for the more flexible schedule as the boys cycled through cold after ear infection after bronchitis after cold. We have had a lull and are hoping that the ear tubes Mylo had placed yesterday and the ones Victor is getting on Friday will hold the secret to kicking the ear infections. Daily nebs have helped Oscar react less severely to colds with his reactive airway disease so we are hoping to level out and ride out the rest of this cold and flu season without much more of the gunk.

The adventurous: 

Our Family Pumpkin patch adventure

Sledding Adventures! 

We have had so many adventure this year and these are enjoying exploring our local libraries, the zoo, trips to Grandmas and Grandpas in New Prague and Wisconsin, parks, swimming lessons and special events! They really can't get enough of getting out and about and trying new things. They are great explorers and as long as their explorations continue to come with out broken bones and stitches (*knock on wood*-I think we are living on borrowed time), I'll enjoy the ride!

and the Long Awaited: 

Victor and his ambulatory EEG

This last section belongs to just Victor and it's probably what drew me back to the blog as I've been sharing our news in pieces with family and friends, but felt that the many people who sent healing, growing thoughts and prayers to Victor throughout our triple pregnancy and on their early arrival should know that Victor has entered a new chapter in his book. Victor has continued to have significant developmental delays where he stays about a year behind all around pretty consistently.
We started down a path of inquiry because the school district was thinking Autism and it didn't quite fit, but we knew something was up. We started with developmental pediatrician and psychologist to do the testing necessary to follow his developmental delays and determine a label that could help us continue to get him the services that we have in place that have helped him progress this far. In the Special Ed world Developmental Delay doesn't stand alone after the age of three without more definitive reasons behind it so it was time to start getting some answers.

At Children's trying to piece together the puzzle
Along side this testing, Victor had a series of episodes where he woke up very lethargic and disconnected for a stretch of time and then a couple of hours later he's just fine. We looked into his thyroid condition being the source of these problems first but many, mostly normal blood draws later they decided to have us go down the neurology route, thinking that he may be having early morning seizures that are causing the lethargy. This led us to EEGs which didn't show any seizure activity, but did show abnormal asymmetrical brain activity which in turn led to an MRI which led to an answer. We have a name for his condition and it was a bummer, but far from a death sentence

At Courage Center, a HUGE part of our village with his built in team of challengers! 

Victor has a rare brain malformation called (I warn you it's a mouthful) bilateral generalized polymicroyria. Never heard of it? Neither had most of his doctors, therapists and teachers-it's rare so we'll be learning what we can to be sure those that work with him are well educated as well. It translates to bilateral (both sides) generalized (all over) poly (many) micro (small) gyria (folds). Essentially where a normal brain has 1 fold his has 3 and being generalized it is happening throughout his brain. This is a form of brain damage thought to be caused by genetics or Oxygen deprivation. Our neurologist was fairly firm in his belief that it is genetic, but it's hard for me to believe that none of the pregnancy and  preemie birth complications come into play so I don't entirely buy that reason behind it, but the MRI doesn't lie about it existing and this is our new reality no matter how it came to be.

His First day of Preschool (Oscar says " When I get big like Victor I can get on the big bus and go to school too!)

In the grand scheme of things, it doesn't change much of what we are doing. Victor already has a great team of teachers, doctors, and therapists supporting him and us to help him grow and thrive. In many ways he has already blown his prognosis out of the water. The neuropsychologist that our psychologist showed his scans to said he wouldn't have expected him to have functional language skills ( he does!)and was surprised he was walking independently (he runs, slides, climbs and plays). His MRI looks like that of a child who should be in much rougher shape than Victor is. Which is very good news because this is not a regressive condition. The skills he has are his and he will keep progressing just with more effort and help from therapy and special services than his neurotypical counterparts. So he is already beating the expectations that would have been placed on him if you made assumptions based on his degree of brain damage. So as far as his development goes, we just stay the course and we thank our lucky stars that he came with two built in jr. coaches to keep up with in his brothers. I'm sure that desire to be part of the team with them has been a huge drive for him to grow and learn! It was hard to hear a diagnosis that took "just preemie delays" off the table and left a lifelong condition on and I'm terrified of the seizures that are seemingly inevitable with this condition, but for now our life and Victor's) doesn't change in any way except we now have a name and it will help us build his services as he continues to grow and learn and knock down whatever ridiculous limitations this label attempts to place on him.

What matters most Victor is HAPPY and healthy and so very, very loved! 


  1. Beautiful blog, beautiful family, beautiful future!

    1. Thank you and I agree we have a pretty bright future!

  2. Gorgeous family, amazing parents, great update. I love it. Life in all its precious messy wonder. <3

    1. "Precious messy wonder" is a great way to describe my world since their arrival...Thanks Kate, I hope you are well!

  3. Love to see your little ones out there, exploring, learning and progressing. Taking three out anywhere can be so challenging, but the rewards are so great.

    Our Baby C was diagnosed with Sensory Processing Disorder at the end of his preschool year, and although we also knew that "something" was up for a long time before that, it really does alter your perception of what is possible... at least for the first little while, as you wrap your head around it. However, as you so aptly point out, they chart their own course, diagnosis or not, and we're along to support, encourage and answer those 80 billion questions, diagnosis or not!

    And holy cow, can 3 three years olds be challenging, or what??!! I longed for their two year old selves on many occasions. Four has been better, but we too have been sick since the end of August, continually. The last bout left us with pneumonia and bronchitis, and now we're back to fevers and ear infections. I do wonder if their prematurity has anything to do with it, because this is insane. I do recognize that I have 4 small children (Baby Z is 21 months), but even that does not explain all this illness.... we're also on 3 x 2 puffs of steroids a day. Ah well, perhaps with the weather warming up, we'll all get better soon!