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!

November 2008

Shortly after my last update, things took another bad turn for Vic. On Nov 13th, Vic awoke from sleep, crying and badly retching. Vic coughed up a large amount of dried blood. We had seen dried blood in the past, it was mostly related to teething and stringy but his was so much more than we had ever seen. After doing some nurse-type work on him, we settled him down, he fell asleep and we went to bed. The next morning, shortly after getting him ready for the day he spent another hour of retching and brought up food with more bits of dried blood.

I phoned the doctor and requested that lab orders be put in at the hospital so we could run some blood tests. After that horrifying hour, Vic’s attitude completely changed; he became happy and was very alert. So, I started to think (again), “maybe this is teething”—he’s always been sensitive with each tooth. We did the blood draw and then we were off to Vic’s osteopath (1 mile away). During his session, I got a call from the Dr’s office; Vic’s potassium was extremely low and I had to rush him to the ER.

Surprisingly, I was very calm during this whole thing. I was NOT at all worried. I knew this had to be related to the hour he spent vomiting in the morning and his system just needed time to “reboot”. He was telling me that he was OK by smiling and being very chatty. I phoned Gary, telling him not to rush out of work. I was sure that after another set of labs and keeping his food down that Vic would be fine and we’d be heading home.

However, Vic’s potassium lowered and he was admitted. While in the ER, and after Gary had come and then gone home to pack for the night, the ER nurse came in telling me that Vic’s potassium IV bag had glucose in it. I was livid! Vic should NOT have sugar because of his diet and ALL of his files show this. Knowing the drill, I told everyone about his Keto Diet as we were checking in. I always make sure to let the nurses and the doctors know this. I could not believe that this error was made again! Quickly, I lost it and demanded to speak to the ordering doctor. I gave her a piece of my mind and am sure many people heard every word that I began yelling.

At about 10p that night, after returning home, I wrote a message to the hospital and all critical staff, regarding this consistent abuse of errors that we and especially, Victor, have endured. The following day, Gary told me that in the wee hours when Vic had (as expected because of the glucose issue) a long series of seizures and when Gary asked for the emergency med (Diastat), it was NOT on the floor. Another letter of complaint was immediately written!

Vic stayed for one night. We wanted out of there as quickly as possible. All of his blood work came back normal and he was no longer retching blood. We were discharged the following evening at 5p but left with no answers re: his vomiting or the blood.

Two days later, I took Vic to see his GI doctor. He, too, had no explanation for what was happening. I told him that I stopped Vic’s Prevacid several weeks before, because he’d been on it so long that I was worried that his body wasn’t producing enough stomach acid to help breakdown food. But, we were giving him Zantac instead. Still, nothing was surmised regarding what was going on with Vic. Several days passed and on Friday, Nov.21, I took him to the hospital again for the same reason. The retching and blood returned and I was focused on seeing a different doctor or having them a GI scope to explain the blood. Gary met me at the hospital and we sat for hours (5+) in the same exact room as one week prior; waiting for answers, getting none and then planning to take Vic to another hospital. We demanded to see someone in charge!

Finally, after hours of being stalled because we mentioned leaving, we spoke to two medical directors and an administrative person. One of the doc’s was a specialist in GI surgery and made a special trip to see us. He kindly explained what was going on. Simply, Vic needs Prevacid. Zantac is just too mild for him and the Prevacid is strong enough to alleviate the irritation that is caused by his feeding tube. We literally just started giving him a 2x dose for a few weeks and he has not retched since. We’ve got him down to 1 tablet 2x/day and he is doing worlds better. I am amazed that what was explained to us in the ER was not explained to me during a routine clinic visit. We know this all could have been avoided, if I was given a simple explanation to begin with. We are so grateful to that very knowledgeable doctor!

Meanwhile, as we were dealing with the hospital experiences I caught some bug that left me in pretty bad shape. I was unable to talk without having serious coughing fits for weeks. Into the night, I coughed, didn’t sleep and was plain exhausted. Somehow on top of his regular work, Gary managed to keep our home ship sailing extremely well.

Thanksgiving was not too far behind and we were so thankful to be out of the hospital! Our gracious friends had us over for dinner and we all had a great time catching up and relaxing. Gary & I rounded out this rollercoaster month by celebrating our 5th anniversary. We had a fantastic dinner and were able to finally relax on a date together (it had been months).