Connections!

Now that we’re past Halloween and I find myself (again) behind on updates. I feel these past few months have been all about connecting with new people and reconnecting with those that we just don’t get to see very often at all.

Our trip to New Jersey just after Labor Day was wonderful. Vic surprised us with how well he traveled on the plane and how well he did the entire trip. It took a lot of personal gumption, on our part, to not only pack our bags, get through the airport and security but get on the plane! Gary & I were quite nervous about Vic’s sound sensitivity—not knowing how he’d react but he did extremely well! In fact, he had 1 small seizure during the entire flight and unfortunately 1 rough Sz as we landed in Seattle. All in all, in terms of Sz—Vic hardly had any the entire trip. I believe it was related to the constant activity and new medication.

We all had a great time catching up with Gary’s family and even took a brief 2-day jaunt to Connecticut to reconnect with friends of mine. The weather was beautiful the entire time (minus one rainy day) and we were able to see just about all of Gary’s family at his uncle’s surprise party. Gary even took in a game of golf with his uncle. I also have to mention that not only was seeing family & friends big on our list but re-experiencing delicious East coast deli and homemade Italian food—Oh Momma Mia! Oh, how I fondly think about those cannolis (even when I ate too many and got nauseous).

The return trip to Seattle was absolutely beautiful! Everything was so clear….it was magical to see the mountains: the Rockies, The Cascades, Mt. Hood and Mt Rainier! It was a wonderful return flight home (minus that 1 harsh Sz) and we jumped right into our hectic schedule-Day one.

Vic returned to school on Sept 21st. I accompanied him through the day and we both rode the bus home together. Vic was totally enamored by the sound and feel of the bus. He giggled just about the entire way home that day and I’m told he still does. He loves being in school again—hearing his friends, his teacher and having activity around him. I LOVE that he’s in school—period! He gets such great stimulation at school and is always coming home with painted fingers or some leftover art project on his clothes—it is wonderful.


An interesting thing happened while we were in NJ. I checked my email and got a message from a woman I’d never met. She had heard about me through a mutual service provider and contacted me directly. After reading her message and later her blog, I was immediately drawn to this wonderful family. The Marshall’s are similar to us in so many ways, namely their son Owen is very similar to Vic.

It is uncanny how alike we are to this family that lives a ferry ride away on one of the nearby islands, they are also in the coffee business, owned an Element and now drive the exact same Odyssey! We are so like-minded. After back and forth emails and a long phone call, we finally had the Marshall’s over for a lovely sunny October day filled with not enough time to discuss so many things.

While we’ve met a handful of families that share one or two of our struggles, it is bittersweet to share so much with a family who truly understands the many issues that surround being parents of an extra special needs child. Owen and Victor are similar in many ways. While they are unique boys from each other they share a disturbing and also precious bond. We are so grateful to have this family in our life--sharing, listening and being available for each other while we cope with tumultuous days, moments, endless appointments and therapies. But we also share a unique inspiring journey that only we can truly quantify. Please read Stacy’s post, “Reaching for the Stars”. This passage hits very deeply, for me (and us)—it depicts insights to the lives that none of us would have imagined…a sorority I never would have dreamed to join but am connected to for the rest of my life. Thanks for contacting me, Stacy!

We just ended a family visit from my sister who came at the end of October with her son & daughter. They arrived just in time for Halloween and the Day of the Dead festival. It was great running around Seattle for numerous activities and many were a first time event for all the kids to share. Their journey was quite long but they savored up enough energy to experience a Northwest Fall, filled with unusual rainy and cold weather compared to their typical sunny days. We all enjoyed spending time together, being silly and of course, Bernie loved every action-packed day and every one of them!

Now that the family visits are over, as we head into Thanksgiving mode we’ve been rethinking some of Vic’s therapies. While we adore Victor to the ends of the earth, the reality is that his challenges come at a hefty cost. We have decided to put hippotherapy on hold for the winter quarter and see how things go for us next spring. In its place, we may invest in a horse-type machine that will allow all of us to benefit from the “riding” motions and will offer his in-home therapists some variety to their routine.

In light of the recent Healthcare bill, I thought I’d mention a bit of our reality (along with millions of others). On October 1st, our employer's insurance coverage and company changed. With that, so did some of the therapy allowances. While we are continuing with in-home therapy, it has been cut by half and I’m told this will end when Vic turns age 8. Apparently, many companies halt therapies for kids when they turn 7 or even 6! The insurance companies believe that by some miracle at this age, kids don’t need it since they get therapy in the school systems. Hmm....so, 30 minutes a week is enough for a child who has severe challenges. I am compelled to share a completely ridiculous and true story....

A nearby upper-middle class family with insurance coverage through their employer ordered the same chair that Vic now uses. Their carrier (who is very well-known) has burned so many service provider bridges in WA State, that they had to go through an equipment provider in Oregon to order the same chair that Vic has. This family resides 20 minutes outside of Seattle. The equipment company is located in Seattle (ExoMotion). The order for the chair was literally shipped from Seattle to Oregon to this family's town, near Seattle. It took days of shipping plus a person from the Oregon supplier to drive it back up to the Seattle area and to top it off, the delivery person was without knowledge of the equipment and could not answer the families questions about it!

We too have been in the midst of battling to get the things that our policy says we should get and also get reimbursed from our former insurance company on the things we already paid for. Besides therapies we are trying to figure out how we will get Vic the proper equipment he needs, namely a bed—one that is NOT meant for a typical child or an adult with limited abilities but meant for a child with varying degrees of disabilities and safety issues. I am investigating ways to get the SleepSafe Bed, which was denied by our previous insurance carrier—ugh…Back to Square 1!

And, this friends is why we need CHANGE and good ol' competition. No insurance company should be given the right to waste this kind of money and dictate ridiculous policy while also deciding that they just don't want to pay service providers the rightful fee that is owed them! In fact, it is because this industry has for so long been dictating to the medical field and providers that the actual providers have had to increase their rates, to keep up with the strains that insurance Co's have put on them.

I realize I'm going on a limb with some of our readers but frankly, I see no difference between the concept of a government OPTION and Social Security, Medicaid & Medicare. I have hope that we will one day see a country come together on this issue, where competition will allow the numerous amounts of premiums and co-pays that we pay for, to actually provide the coverage we are expecting, without hassle. I have hope that one day every person in our country will be treated as a human being and not judged by how much or how little their income stream is. ---Yes, a radical idea!

General Health
I am very pleased to say that Vic is doing quite well. Vic got his H1N1 shot and we are waiting for the 2nd dose in a couple weeks. While Gary and I struggled for a month with a nasty flu/cold, Vic has been minimally harmed. He now has a sniffly, slightly gooey nose and is treated with nightly Benadryl. Recently, Vic’s sleep is waaay off and driving us crazy. He woke up the past 2 nights and didn’t fall asleep until 5am, Monday. Last night, he was awake from 11-2a (teething again).

Vic continues on the newer Sz med called Vimpat. We have increased his dose slightly since our return from NJ. So far, he seems to do quite well on it. However, more recently we are deducing that his low seizure days may be attributed to a new finding that we are working closely on with our Naturopath (I’ll share more about our mini-experiment in my next update). Still, Vic reacts negatively to sounds but not always having a Sz and his Sz’s in number appear to be less than 3/day. I honestly think he’s recently gone a few days with no Sz’s at all!

I should also mention that Vic’s inability to move as he should has given our doctor credence to recently diagnose him Victor with Cerebral Palsy. Although this just adds to Vic’s list of “issues”, we hope this diagnosis will help with the many services that he needs.

This update seems lengthy enough for now so until I have time to update again….
Happy Thanksgiving and don’t be afraid to Talk About It!

Much Love & Gratitude,
Laura, Gary & Victor


***NOVEMBER IS EPILEPSY AWARENESS MONTH***

June-Sept 2009

I preface this entry by saying that not only do I feel badly for not updating this blog for many months, but I can’t believe that October is already here! Also, it is with great joy that I write about the wonderful summer we FINALLY had: No unplanned doctor visits, hospital stays and overall—a stable and only slightly bumpy Victor. Now, I lead you to read the original entry I attempted weeks ago. It is my hope to write a follow-up to this entry including Vic’s return to school. Read on!

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Wow, what a busy summer and I can hardly believe that we’re already done with Labor Day. As I write, we are on a plane to New Jersey! Thank goodness we got through check-in, security, the gate train and managed to get Vic on this plane. Talk about traveling with a lot o’ stuff :1 large bag + 1 med bag + 2 small rollers and of course, the carry-ons, not to mention his stroller and car seat! Oh and YES, Vic was patted down---it must have been his sly criminal element. He passed (little do they know that we packed heat in his feeding tube--joking!).

It has been over 2 years since the 3 of us traveled this distance and it will be 7 years since both Gary & I have had the chance to see all of his family in one place. We’ll even get to attend a surprise party for Gary’s uncle and make a short jaunt to see my friends in CT.

We’ve been up to many things these past few months since I last wrote. Gary & I did a major (27 days) Detox, I took a one night trip to Reno for my sister’s wedding and then all of us took a trip up to Mazama, WA where we actually relaxed and had the ability to finish our books. Of course, Bernie LOVED running through the woods the entire time. We spent most of our trip down at the river and Gary finally got in a game of golf.

We returned home to the nearly completed basement project which came just in time for the major Seattle heat wave. Hitting a record 104 degrees, we spent several nights in the new bedroom and have loved taking baths in the new soaking tub. During the Ballard Seafood Fest we got Vic a cool new swing and now that we’ve been able to take out the extra furniture from his room, we have more trajectory to swing him in---he laughs and laughs!

During the month of August we took a short trip to Lopez Island where we walked along the beaches, Bernie played with rocks in the water, we picked blackberries and Victor got his first real barber shop haircut. Day 1 after arriving and just prior to closing for the weekend, Vic was able to get the last cut of the day. It is so nice to see Vic actually needing a hair cut because he now has hair!

Also in August our Dear Zetterl/Bailey crew returned from Germany and the 4 of us had a chance to enjoy and adult dinner. Also over the summer and for the rest of Aug we took in a few zoo concerts and Gary & I rounded out the summer this past weekend, with a wonderful day trip to the Gorge, where we saw Dave Matthews play at a surprisingly dry concert after a full day of heavy rain. Just before heading into the concert, all were blessed with a double rainbow and after not going to a concert like that in 7 years, we sat in row 17, saw everything and danced, danced, danced. Totally AWESOME!

As for Vic, when school ended in June, at that time I was worried that the summer would pass s-l-o-w-l-y. However, a new routine kicked-in and we were busy with daily therapies, swim lessons and tandem hippotherapy. Vic has been busy and doing great in his new chair which has made feeding him so much easier.

With regards to how Vic’s been doing…
His seizures continue and yet another med has come and gone. Depakote just didn’t seem to do the trick so we took him off it just last week. We are now trying a brand new med called, Vimpat. We are slowly increasing his dose. So far, he seems more alert but it’s tough to say that we’re seeing much seizure control, especially since he began teething again the night we arrived in Lopez up to now (Uggh). Mr. Victor magically times things so well. Alas, after 3 consecutive weeks of waking every night, Vic slept through the night last night---a night we all needed to sleep especially for this trip. We’ll see how the rest of our vacation goes.

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).

Victor's Debut is finally here!

Not only am I finally updating Vic’s Blog but we have also been given the green light and link to the film that Victor was in 2 years ago! Yes, now you can view this beautiful short documentary (that features Vic for about 1 minute): “Portaits of Hope” by award winning director, Jon Ward can be viewed by simply hovering on the title, then click to open. If you desire, you may download the poster (featuring Vic) by scrolling toward the end and selecting the link.

As for how things have been going with Victor and us: Since January, we’ve been recovering from colds and catching up with final home projects. We are now in full use of our basement with only some minor decorating left. The bathroom is coming along and will be ready by mid-May, however a 2nd toilet is planned for use prior to Gary’s sister’s visit (next week) and the 4th bedroom is close to done!

Victor has been plugging along with his school & therapy routines. He really seems to love school as we’re always told that he perks up at circle time. In fact, Gary told me of a day where he brought Victor to school and they caught the middle of a special movement/music session. Both Gary and teacher Laura were a little unsure how Vic would cope with all the noise. Apparently, all the kids were banging away on various things and with Vic’s sound sensitivity it would not be unusual to suspect a bad outcome (seizures). Alas, when Vic entered the room he went from quiet and a little grumpy to delighted and giggly (and no seizures)! Gary delighted in seeing Vic be so happy among his classmates and actually enjoy adding to the happy sounds!

We continue to be amazed by the small things that make Vic happy and the way in which he’s handled a barrage of nightmarish incidents. He can truly go from an awful cough attack or listlessness to suddenly pull out the smile card or even the giggle bug. Check out the video I took this past Sunday. It was taken moments following a very unhappy Victor; all it took was his favorite squeaker and some silly background music.



On the therapy note:
Victor began Listening Therapy during his winter break, in February. This consisted of him attending 1-hour sessions, lasting 14 days. During his therapy, he basically listened to Mozart and some Gregorian chant. However, the music was interrupted with various breaks and stops and customized to Vic’s listening abilities. Victor’s hearing is excellent and this therapy is not intended to aid with his hearing. He can hear a pin drop or a sniffle across the room, when no one else would pay attention. From this therapy, although somewhat hard to definitively decipher, we’ve seen Vic show more interest in the world around him. His focus on objects seems to have improved and he does seem to make more attempts at lifting his head into a more neutral place. Yet, we still contemplate the relevance of this therapy and will likely try another session (15 days) in a few months to give us a better gage.

Hippotherapy continues to go very well for Victor and he seems to have improved his trunk control. He really loves his sessions with Zoro (the horse) and his therapist, Deb. In fact, following his ride, he adorns a big smile and often giggles in the car. Perhaps it is not just that he is on a large animal or playing in the therapy room, before riding Zoro, but the fact that he is literally surrounded by wonderful people during his rides. The wonderful volunteers who graciously join his sessions each Thursday adore Victor and I suspect he absorbs their energy. Elaine and Patricia add so much to making his sessions even more enjoyable and we thank them for every minute spent with Victor! Hippotherapy recently had a 2-week break and Vic will be back in the saddle this Thursday.

Swimming: Although we don’t swim with Vic as often as we used to we’ve recently discovered the Bellevue Aquatic Center. It is a long haul for us, but this pool is simply amazing. It is so nice to have a pool that truly caters to people with disabilities. This pool has a family changing room and a warm therapy pool. In fact, if we wanted to go there during a regular family swim and it was too chaotic for us, we could have them section off an area only for us or even request that the pool be emptied (a cold pool is across the way)! And, another great thing is that not only is the pool generally at 92degrees but it also has a walk-in ramp. Too bad there aren’t more pools like this for so many people that really need them and Kudos to the City of Bellevue for supporting this!

Medical stuff:
We continue to work closely with our naturopath who has identified Vic’s low iron levels and recent low cholesterol. We are combating these issues with supplements and goat yogurt (high in cholesterol and protein). So far, Vic’s labs show that these methods are proving him justice. It is also evident in his overall being. However, in spite of the positive things that have improved Vic’s health, he continues to struggle with seizures.

Many of his seizures still are an outcome of his intense sound sensitivity or lately seem related to (yet again) teething and perhaps a growth spurt. We have decided to make a change in his seizure meds because of the severity of some of his seizures and are currently weaning the Canadian med called, Clobazam. For Vic, we couldn’t see a noticeable change in seizure activity and we found that he became real floppy instantly after having been given this med. We felt that this med has contributed to his recent inability to keep some food down because his muscle tone has been directly effected by this med. So, we’ve decided to go back to Celontin.

Celontin was a medication we attempted just weeks before Vic’s hospitalization, last June. At that time when we didn’t know whether it was the Celontin or something else causing his illness, we stopped the celontin. Now that he is has been so much more healthy, we’re giving this medication yet another try.

Random happening:
This part of my update has absolutely nothing to do with Victor or us, directly but this happening was so cool that I thought I’d add it to the Blog. One evening while leaving my eye Dr appt and heading toward my car, I saw 2 white ponies with a girl on top of each. They each wore white and had on large white clocks upon their heads, that lit up. Their entourage wore top hat and coat tails, holding large lit up stars. Ok, I couldn’t control myself; I had to see what was going on. So I asked and learned that there was a free outdoor play going on at our little Old Town Ballard bell tower. There, was the coolest sight: all characters dressed in white with beautiful music playing behind them. They were acting out a scene from"Lullaby Moon". While I could only stay for about 10 minutes, it made me so happy that I felt the need to share. I love random, happy things! For more information on what I’m describing check out this website and view their amazing photos! www.lucianeare.org


We’re looking forward to family visitors and hope the sunshine that now rains on Seattle stays with us much longer!

Have you seen this toy?
This toy is perfect for Vic, it lights up, plays music, giggles and the little heads fit his hands really well. But, we have been borrowing this and it's time to return it. This is a discontinued item, so in case you're out at a yard sale or 2nd hand shop and come across this, please scoop it up for us. We're happy to reimburse any costs. Contact me if you come across this by posting a comment.