Victor is 4!

So much has happened over the past couple of months that I struggle with where to begin. As of June 1st, Victor is already 4 years old. Each year it becomes harder to realize that his age doesn’t match his developmental level, but we are delighted that he is 4 and that we have had another year adding to our experience as his Mom & Dad.

For Victor’s birthday, I decided to do a joint celebration for both Gary’s 40th (he’ll not be happy that I’ve posted this fact) and Victor’s 4th. On May 17th with friends coming over for a BBQ, I surprised everyone by having an impromptu birthday celebration. We had (regular and gluten-free) cupcakes and sang to my boys. That same day it was also Ballard’s annual Norwegian Day festival. So, after stuffing our faces we all walked down to 24th street, where we watched the parade and the kids scooped up free candy. Victor loves hearing the marching bands, especially the drums—we’re so glad that the noise didn’t bother him.

On Vic’s actual birthday we had a mini-party with his class and were surprised by his friend’s guitar and singing abilities while he strummed “happy birthday” to Vic. It was adorable! At home, we had a quiet celebration among the three of us.

Now to backtrack a bit….our last update was days prior to Vic’s aunt and cousin’s visit. We had a great time with Aunt Janine and Cousin Paul. Vic enjoyed the extra love and attention while listening to Paul & Janine’s voices. Aside from Vic and Paul reuniting, it was also very eventful for Bernie-dog; He and Paul were inseparable the entire visit and Bernie loved every minute of it!

During their stay we went to the zoo, Gasworks Park, The Space Needle, the Science Center, Vic’s school, hippotherapy and jaunts around the neighborhood. Victor was so glad to have his big cousin around. Big cousin Paul took loving care of Victor; wanting to push him in his stroller everywhere we went.

Following their visit, Gary jumped back into working on the basement, focusing attention on the bathroom--having the tub tiled and setting the cabinets. We also made a big leap and joined existing hundreds of families by trading in our beloved Honda Element for a minivan. It feels weird but we can’t complain about the luxury ride and it will be so much better when Vic’s first wheelchair/stroller arrives later today!

Equipment/Therapy:
After procrastinating on figuring out what type of chair Vic should have, we finally found one that actually excites me. Believe me, it has not been an easy process on many levels. However, after seeing Vic’s reaction to this very cool chair, it literally brought tears to my eyes and made me want it for him ASAP. Seeing him sitting in the proper position, lift his head, explore around him and shift his own weight----amazing!

Not only did we find the right piece of equipment for him, I stayed on top of it to expedite the ordering process which literally can take up to a year in too many cases (a true and horrific fact). At our first meeting with ExoMotion, we struck up a great relationship with them. So much so, that we will be getting the Hi/Lo base at zero cost!
This item is typically quite hard to get insurance coverage for, but the hitch is that because we all witnessed Vic’s reaction in the chair, they’ve asked us if we would participate in a case study to prove how well their system works. Click here to see his new seating system, called The Twist easy, a type of dynamic seating system that moves with the person using it. Make sure to watch the video as it gives a great demo on this technology. Well, not only do I want this seating system for him but I want the car seat and mattress too—both likely not covered by insurance but we’ll see-- I am quite persistent.

School just finished last Thursday and I can’t believe that my little guy completed his first year of it. Any free time I had just went out the window. He’s out of school until Sept. 21st and I’m figuring out how to fill our time with some fun things rather than all therapy. So far, I’ve reserved Friday afternoons for fun stuff and we’ve lined up some summer trips including our annual Zoo Tunes concerts.

We already started swimming lessons once/week and hippotherapy will continue on a different day but for the rest of the summer he will do tandem rides. This delights us because few slots are available and we just know he’ll benefit even more. Check out this amazing video that was put together for Little Bit, and keep your eyes peeled for Victor. Also, click HERE to see a photo gallery of shots that are simply incredible (pricey but amazing) images of Vic on his horse.

Medical Stuff:
Vic’s seizures persist and at one point were slightly out of control. We had to use Diastat and Ativan more frequently and decided that the Celontin was not helping at all. So we’ve replaced that med with yet another; Depakote. We thought we saw a difference at first, but it seems to have waned somewhat so we continue to play with the dosing and at this point, it makes him real sleepy. We’re told the sleepiness will wear off. Vic’s sound sensitivity coincides with his seizures and we keep our fingers crossed that doctors are right, and he WILL one day outgrow this.

We continue to work closely with Vic’s naturopath and I’m thrilled to announce that for the first time in his life, all of his labs came back looking GREAT. Vic’s anemia seems to have subsided with simple iron supplementation and what a difference this has made with his entire being. To boot, Vic’s hair is growing and he finally got his hair cut for the 2nd time in his life.

TOMY toy Update:
THANK YOU, Jeanne! The TOMY toy you sent to us is well
utilized. We appreciate you taking the time to send us this toy and at no cost! You are an incredibly giving soul!

Memorials:
I close with mentioning two people who have entered our lives through Victor and who have unfortunately left this earth for brighter horizons---

We hold our Dear friend, Rose Chavez (2003-2009), in our hearts each day and hope that her parents and family move beyond this struggle as they keep her close to them. Rose too suffered from debilitating seizures and the rare Dravet syndrome. Her life was very short but she touched so many lives.

We also hold space for Judi Moore, Director of Boyer Children’s Clinic for 32 years and a strong advocate for children; crusading for insurance coverage of special therapies and was involved in many other wonderful organizations. We were fortunate to know & work with Judi in support of Boyer and other Birth-3 programs that continue to struggle with staying open (many have closed across the country).