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.

Dedication to my Aunt Nancy

I dedicate this entry to my wonderfully loving Aunt Nancy who after suffering a massive stroke, passed away peacefully with loving family around her, on January 5th, 2009. Aunt Nancy (and family) welcomed me to Seattle 12+ years ago when I moved here from Boston and knew no one. Aunt Nancy was always interested in me and what I was doing. She was always concerned with how Gary & I were handling things. She loved Victor dearly. She always wanted to know how his therapies were going and if he needed anything. Despite my telling her that he was fine and needed nothing she’d make a point to get Victor something that he could inevitably use. Below is a clip of Victor's recent ride that was attended with my mother on January 8th. Prior to Christmas, Aunt Nancy was supposed to join us at this ride. We dedicate Vic's session to her.

Aunt Nancy: We miss you dearly, love you fondly and Thank you for your wonderful loving & giving heart!

Dec '08 & Jan '09

(For the November update, scroll down past this entry and then return here)

As we entered December I was still getting over whatever weird bug I caught and soon after Thanksgiving Gary set up the trains and we decorated for the Holidays.

By this time, Gary had completed a big portion of the basement and after the carpet was installed we welcomed Gary’s early Xmas gift: 42” HDTV. The rest of the furniture followed and we began using it just in the knick of time... Seattle & the rest of the Northwest was then pummeled with snow.

With cold weather upon us, and Thanksgiving behind us, Vic had his last hippotherapy session for the quarter on Dec 11th. It was his most delightful session ever! Vic was so bundled that he could hardly move, but the air must have hit him perfectly because he was smiling and giggling the entire time. He was even presented with a wonderful tree ornament from one of the volunteers who helps with his sessions.

I sure didn’t expect it but not only was Dec 11th Vic’s last day of riding for the quarter, it was also the last day of school until January 5th! During one of his snow days, Vic got his 1st Botox shots in both his left and right hamstrings to help loosen his muscles and make stretching and standing much easier. We have seen a difference and Vic’s legs straighten so much better. Unfortunately, the botox wears off and he’ll be getting these shots every 3-4 months or so.

Thankfully, during many of the snow days Vic was able to continue his in-home therapy (when the therapists were able to get here). He also really enjoyed hitting his button and activating the Xmas tree and trains again this year. The snow, while absolutely beautiful, left many of us feeling a bit stir crazy. Bernie, however, loved every minute of it minus trying to figure out where to poop.

During the end of November and into December, Vic maintained keeping food down but had re-developed his sound sensitivity. He was ultra-sensitive again, to the point where we began using his earmuffs more regularly and his seizures became more severe and more common. Also, his sleep pattern was way off! He was waking up multiple times/night and wanted to sleep during the day. Before the break, his teacher told me that he’d snooze a few times during class. So, we decided to try another medication.

For several weeks we put Vic back on Klonopin; this was a med he tried in the summer while in the hospital. At that time, we saw it stop the seizures entirely but we stopped it because he was completely knocked out. However, since time passed and he was much stronger than he was in June/July we gave it another try. At first it seemed to help but slowly we saw him be less present. He only had fleeting moments of alertness and was always very tired. We stopped this med just before Christmas and have replaced it with a specially ordered Canadian med; Clobazam.

To date, Vic is still on the Clobazam and we’ve increased the dose slightly in order to get us over the hump with the change in his Keto Diet. To back up….Vic’s mid-December labs showed both a major decrease in iron and other critical vitamins, so we recently brought his fat content down in order for his body to absorb the nutrients that he desperately needs. Vic has also been getting liver injections to increase his iron level but recently we’ve switched to an easily digested iron supplement. Overall, we are seeing improvements; he is more present and happy, vocal and loose but his sound issues remain and are the cause for most of his sudden seizures.

As we closed out 2008, not only did we end it with watching the last Sopranos episode but Vic fell asleep for the first time ever before 9p and stayed asleep until 10:15a the next day! He’s continued to sleep better these days with a few early morning interruptions due to teething. Basically, he may cry and settle down shortly after we’ve put gel on his gums. We’ve also been keeping his bed real toasty prior to laying him down…this seems to help him stay asleep but we’re still experimenting.

2008 was full of more than one roller-coaster ride! Yet, we are grateful for so many things that have helped us get through those rough moments: supportive friends, family visits, a wonderful dog, good friends who’ve watched Bernie when we’ve been inpatient, super neighbors and of course the best sitter for Vic ever: Lynn! We’re so glad that our year ended with several social get-togethers and are happy to have had another Thanksgiving & Christmas at home. Having a peaceful New Years was a dream! We hope this is the start of a wonderful year ahead and a year filled with good things for Victor’s progress.

**Hospital Complaint Update**
In response to my initial complaints regarding the many times that the ER/hospital messed up, we received both a verbal response from an ER Chief and a written letter explaining that our complaints have not gone unnoticed. In fact, I received a screen shot of the changes that have made within the hospital’s computer system; alerting any medical personnel about specific issues. For Keto Kids, the message now reads: "Ketogenic Diet Precaution! Ketogenic Diet Patient - Seizure Risk" , followed by a list of what can not be administered.

Thank Goodness, Vic and other kids like him may feel safer as they should be!