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! 

Wednesday, January 1, 2014

Triple the fun holidays!

We are officially a family that can all say "ho, ho, ho", open our own presents and take down (crash) a tree as fast as mama can put it up. This made for a very busy and fun holiday season. We got the tree up shortly after thanksgiving and it was fun sharing this adventure with the boys

"Helping" get the tree up

and in the time it takes mom to open the cupboard with the lights...take it back down. 

 We made our first salt dough ornaments and hung them by our "Christmas in the NICU" hats and I marveled at how their little hands are now as big as their hats were then. They've grown so much!

We got to go to the Macy's 8th floor fun and meet Santa with our dear friends and fellow lunatics, Auntie Rachael and company.
In awe of the elves

and really struggling to not go up on those stages! 

Upon entry Oscar ran right up to Santa's lap, Mylo shook his hand took a step back and hopped up next to Santa and Victor hugged the tree in the corner, but was more than happy to sit on Santa's lap so long as he could pull that beard! 
 The the official celebration began, first on Marty's side of the family at Great Grandma Helen's and then Grandma Monica and Grandpa Norms's....

Santa came in the morning and after all the new presents from the night before they hardly noticed the bikes that he delivered!

A little fun at home with just mom and dad and a couple of days of r&r before we took off for Grandma Pat and Grandpa Roger's.

Happy new year to you all! We're pretty excited to see what 2014 will bring!

Tuesday, November 5, 2013

We have A LOT to celebrate!

Our house now contains THREE 2 year olds (as of October 23rd, I'm a little slow)! I'm not sure how we got here because the first 2 years are a blur as any Mom of Multiples will tell you! I'll have to go back and read my own blog to jog my memory...

Well, regardless of how we got here, here we are at an incredible time in our boys lives. They are so inquisitive, creative and adventurous and are really forming their own individual personalities! It's funny I look back through the years and can see how we were leading to this day from even their very early, very tiny moments,

 From the anticipation in the room on their birthday

to their first official photos (Mylo)



 From first Baths

to first days out of the isolette

to graduations from the NICU
they've had so many, many milestones and have been growing towards the healthy, happy, silly little boys that giggle their way through our house today. 

These are certainly little fighters that deserve to be celebrated! 

and celebrate we did. They had a party with all the grandparents including Great-Grandma Helen and a some of their aunts and uncles and cousins. They all love big diggers, especially Mylo, so I had a blast making them a cake that I knew they'd be excited about...

and we had fun getting them to help them blow out the candles

and the only photo from their party where they are all looking at the camera! 

On their actual birthday we  had the traditional Angel Food cake and a nice time opening presents with Mom and Dad and Grandma Pat. I absolutely love that of all the gifts the boys received their favorite are all the books. I have readers and am oh so glad for that! 

and as much as we love our books, I think this is my favorite shot of the boys together on their birthday...

We have a lot to celebrate! Happy 2nd birthday little men! 

Sunday, October 27, 2013

growing, groWING, GROWING

As we are fully getting back into the swing of things with the new school year and new routines, I finally have a minute to look back and share our fabulous summer adventures with you all! We truly enjoyed every minute of it, well maybe not the minutes at 2 and 3 and 4 am where somebody's new eye teeth and molars were entering this world for a large portion of the summer, we didn't enjoy so much! But as long as I was able to get fully caffienated to start the day we had pretty amazing daylight hours! We spent a lot of time this summer learning how to get out of our stroller and play in new places without giving mom too many heart attacks along the way. We have had a blast exploring and my motto for the summer is "we can always pack up and go home!" So most days we tried to have at least one adventure, sometimes it's just to a local park, which the boys are getting really good at and my only rule now is no tunnels so aside from that, the boys have pretty much free reign on the equipment and scary as it is actually do pretty well. One of my favorite (and scariest) quotes from one of the docs at our clinic when I said I was surprised how busy it was at urgent care hours on a summer Saturday morning "well, you know, flu season gives way to monkey bar season." I'm grateful that we weren't hit with any accidents and am so amazed at how strong and flexible and healthy my little 2 pound babies have become! Well in all these adventures my favorite ones start in one place, home. I love watching the boys navigate the world of sharing, eating, climbing, talking and walking right in our own back yard. They are learning new things everyday and we are extremely lucky to have such healthy little boys growing and thriving after their rough beginnings.
All Great adventures begin in your own back yard with balls, 


 and sprinklers and lots lots more!

We've also ventured out a lot to discover the great places our city has to offer and we've explored and have spent time at the library, the aquarium, lots and lots of parks, family yoga class, the zoo, local restaurants and many other fun new adventures. We went to our first wedding for Uncle Kevin and Aunt Jessica  and we also spent a week of summer in Southern Wisconsin visiting my hometown and my parent's farm and meeting lots of family and friends for the first time. I could share a million pictures, but I'll stick to our week away, we had lots of fun!
dressed up for Uncle Kevin's wedding

teaching our friend Jenny and her BG how to corral triplets at the zoo


at granpma's place

chillin' at the farm

and eating at the Unique. 

As we've settled into the fall routine we've  been having a blast getting out in our littls red wagon shopping going to parks, watching mommy in a race and our first pumpkin patch experience. The boys loved the free space to run and run and we really loved the animals. Especially Victor!

At home with our pumkin stash!

I'm one incredibly lucky mama. These boys are growing into such amazing little humans with personalities that delight your soul, melt your heart, drive you crazy with worry, and yes, madden you to no end, but in the end the thing they do best is bring an amazing love of each other into our family. I can't imagine that I could love them anymore, but each day I do. They are incredible!