We have had a wonderful, challenging, busy and adventurous and long awaited 3rd trip around the sun.
|At my niece's wedding on the family farm, a perfect place for them to find a world full of wonder!|
|They sure are cute, but it sure isn't easy|
|Celebrating our 3rd birthday at Created To Grow|
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.
|Our Family Pumpkin patch adventure|
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|
|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!|