Feb-Apr 2010

Ok, it is official...I am not a prize winning blogger. In fact, some of you have tried to get me to do FaceBook but clearly that is outside my realm of maintenance (and I'm guessing none of you have interest in knowing when I've given Vic his meds, thrown the ball with Bernie, made dinner, gone to work, practiced yoga or brushed my teeth). Time sure has flown!

I begin this post with our most recent events: Without a doubt, Vic has kept us more on our toes than usual these days. In fact, at the start of spring break Vic began vomiting. At first, we chalked it up to a bug since a classmate also had been sick days before. But then, his vomiting was so odd; it seemed to occur more at night than in the day which lead to a lot of guess work and 2nd guess work. Timed beautifully with the time when we started taking away Vic's prevacid (for acid reflux), we then weren't sure if it was a bug or a bad reaction to the lack of prevacid.

Perhaps some of you recall at the start of the last lengthy hospital stay, we attempted to take Vic off of Prevacid. This then lead to a host of other GI infections and then the pre-albumin issue (for a recap on that experience go to July 2008 post within this blog). At that time, it was unbenounced to us until it was critial, that the prevacid was helping relieve the inflammation which occurs when a person has any internal device (IE: feeding tube). So why did we take it away if it was helping buffer the irritation between his feeding tube and his stomach? In short, stomach acids. Stomach acids are a healthy thing. The reason we produce them is to help break down foods for proper digestion and I strongly believe it is unhealthy to remain on antacids for long periods of time. Also, it has been a longtime goal of ours to feed Vic REAL food, not just some weird high fat Keto formula. Over time and discussions with our naturopath, we then learned that there is a way to get him off prevacid (which, by the way, it is extremely expensive- $95/mo for 30 pills WITH insurance coverage). So we began weaning Vic from the prevacid by replacing it with flax /cinnamon water (take 1 part flax seeds +10 parts warm water+ sprinkle of cinnamon, let sit for several hours until water becomes viscous. refrigerate and use as needed). Things settled. He seemed OK.

It took us days to finally say that it WAS some sort of bug, because he timed these bouts (as usual) with adjustments that we had made. In spite of the difficult week, Vic did enjoy his very first Easter egg hunt; sponsored by the Dept of the blind where they had beeping eggs. The event was really nice and we had a chance to share in the fun with friends.

After Easter, Vic seemed more chipper and returned to school. The following week or so things returned to semi-normal. However, intermittent vomiting only at night, continued. This was confusing and worrisome. We started to think about what our neurologist told us weeks before; that there is something called; Chronic Vomiting Syndrome (CVS), which can sometimes occur with people who have neurological issues. Ok, this freaked us out. But, the Dr. didn't believe Vic had this. Then, I recalled that the naturopath had also suggested we give him Slippery Elm with the flax water. So we added that to the regime and he seemed to settle again.

So, then, just last Friday immediately following his therapy session, Vic spiked a fever of 103 (It was also the day that I was heading to Portland for a solo trip) and became very lethargic. The rest of the weekend, Gary got the fever down but Vic's vomiting worsened. I thought again about the CVS and also considered his bouts with the timing of his meds; I believe it seemed to be related. By Wednesday, he seemed much better so we attempted school again but alas he fell asleep an hour in. At home, he just about slept the entire day and had developed a hearty cough. After a warm bath and a worsening cough, we listened to his lungs in heard tiny pops. Both Gary & I knew....it was pneumonia, which likely developed from the chronic vomiting.

This past Wednesday night at about 10p we took Vic to the ER, where they set him up with a painful IV, took blood tests and an Xray. Having gained veteran status at Children's we expected that he'd be admitted; bags were packed, plan was in place but WHOOPIE---we were discharged and got Vic in his own bed at 1:30am! Today, Vic is much better, still coughing, great spirits and even had a PT session. He's taking antibiotics but still we have no idea why he won't keep anything in his stomach other than he has some weird bug that simply is taking a long time to pass. As a reminder and as evidenced by this experience, I caution others to be careful when sick, around those whose immune systems are more suppressed. It is so important to stop spreading germs by washing your hands regularly and covering your cough. People like Vic, have a much harder time handling any kind of bug.

Having updated you on our latest month of roller coaster rides, I am pleased to say that Vic has maintained a seizure level of about 5-7/week since we began using Vimpat for seizure control. He continues on the this med but as I mentioned before, I still wonder if the vimpat has played a role in perhaps exacerbating the nausea from the likely virus he now has. So, just today we've decided to split and reduce his dose. Another other thing that I almost forgot to mention: we are planning to take Vic down in ratio on his diet. Meaning; since January 2009 he's been at a fat to carb ratio of 3.75:1. We now have him at 3.5:1 and while I am hoping to get him off the diet altogether, we agreed to make his goal, 2.5:1.

And, I now, update you on the last therapy we'd been investigating, called ABM (Anat Baniel Method). As it turns out we decided to follow the traditional Feldenkrais path instead of ABM, which is based on Feldenkrais. For those of you unfamiliar with Feldenkrais I urge you to go to the link I've included. In my words, it is a type of movement therapy somewhat similar to physical therapy but lends itself to much slower, more purposeful movements made to heighten the brain's awareness with the physical movement being attempted.

For example, at one of the first sessions, Vic's therapist had Vic on his tummy, leaning over a soft roll. She showed me how she pressed his right shoulder into it's socket with a semi-light push of his arm. Instantly, Vic's right leg pulled up into a crawling motion. In contrast to traditional Physical/Occupational therapy the therapist is somewhat more forceful than the Feldenkrais practitioner. This practitioner guides a person toward the direction s/he wants to go. Feldenkrais method sort of says, "look at the subtle things he's doing and gently guide him, in that direction without forcing him".

Physically, Victor still is unable to hold his head. He has turned over from a side position but not a volitional front to back. Vic's trunk is still quite slumpy, but he's getting stronger and does hold himself upright from time to time. He tends to pull his head toward the left more often than in both directions and he will only hold on to objects, if placed in his hands. At times he will push things, like his button toy, but it's hard to know if it happens with purposeful cause and effect.

With Feldenkrais, we have seen an instant reaction from Vic's body and with his spirit! He is very calm during these sessions and has giggled throughout. So, we are considering taking a break from all traditional therapies in order to give Feldenkrais a true test. As it was pointed out to me, we've been doing traditional therapy for years and while he's made some gains...they have been minimal. So, rather than stop everything entirely, we may put the others on pause and then see what happens. We are both excited and ambivalent; mostly excited and ambivalent only because of the cost. And yet again, unlike traditional therapy that is covered by insurance, Feldenkrais, on it's own, is considered an "experimental" therapy and therefore not covered by most insurance. We are often amazed by the amount of alternative therapies that exist and in many cases actually show true results. However, almost all of these alternative methods are not covered by insurance. So, even with the new Health Care Bill, this issue may still exist.

In addition to physical movement therapies, we found a wonderful new chiropractor who also uses cranial sacral. Since the end of January, I've been trying to bring him 2x/month. Vic also had a recent eye exam which showed him to have an astigmatism. So, his prescription has been altered and it has been suggested that we continue patching alternating eyes to help bring his eyes more center. Also, since his vision seems to have improved and with fewer seizures, he had a repeat VEP. In essence, the test proved that his vision has improved but not to the extent that he is able to see at a distance. As far as we can tell he sees slight images at a very close distance.

You may/may not recall I last mentioned that we were trying to get a new bed for Victor, as his crib had been nearing it's full Victor Capacity. Well, by total luck (which doesn't come our way often) we were able to get it covered by insurance and it has been delivered! Now, we can change Vic with much more ease. This new bed is mechanical and moves up/down and adjusts at both the foot and head with the touch of a button. To top it off, it looks nice. It is made of real wood.

Last, if by now you don't know the benefits of our new health care bill, I urge you to look beyond mainstream media and negative attack groups to the source: HealthReform.Gov where all benefits are posted. This site is offered by category.

Below are the things that will immediately happen in 2010
Note: items with a *= directly impact Victor & us !!!!
1. SMALL BUSINESS CREDITS
*2.HELP FOR UNINSURED AMERICANS WITH PRE-EXISTING CONDITIONS UNTIL EXCHANGE IS AVAILABLE
*3. ENDS RESCISSIONS
*4. EXTENDS COVERAGE FOR YOUNG PEOPLE UP TO 26TH BIRTHDAY THROUGH PARENTS’ INSURANCE
5. HELP FOR EARLY RETIREES
*6. BANS LIFETIME LIMITS ON COVERAGE
*7. BANS RESTRICTIVE ANNUAL LIMITS ON COVERAGE
*8. FREE PREVENTIVE CARE UNDER NEW PRIVATE PLANS
*9. NEW, INDEPENDENT APPEALS PROCESS
10. PROHIBITS DISCRIMINATION BASED ON SALARY
11. HEALTH INSURANCE CONSUMER INFORMATION
12. HOLDS INSURANCE COMPANIES ACCOUNTABLE FOR UNREASONABLE RATE HIKES (starting in 2011..I especially love this one)

How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and strong. Because someday in your life you will have been all of these. -- George Washington Carver

Welcome 2010--many things happening!

2010 is here...a New Year already in full swing and I find myself still catching up on various projects (this blog, for one). The recent Holidays gave me much gratitude for the first GOOD year we've had since Vic entered our lives. It's odd saying this as most parents likely reflect on that first year of life as the "best year"- a time of new beginnings, hope, joy and wonder--I recall quite vividly wanting those same thoughts and,at times, I did but mostly that was swept from beneath me. In its place of wonder and joy, we instead experienced: fear, worry, anger, and often feelings of "Why me?").

As we've struggled these past 4 1/2 years with Vic's issues and the uncertainty of knowing where his future lies, it is obvious that we have had our fare share of roller coaster rides! I don't think anyone assumes our life easy or wishes they were in our shoes but as much as these years have taken a toll on us, these years have also been more of gift than I would have ever realized. I am amazed by the hurdles we've crossed, sometimes overcome, and all the while felt such love from so many directions. It is times like now, that I am grateful for our family, I am grateful for my little boy, my hero, my rock!

As I move forward with this feeling of gratitude, I begin 2010 happily announcing two major accomplishments:
1. It has been over a year that Victor has had to be admitted to any hospital or we have had to rush him to the ER for any unforeseen health concern.
2. Vic's seizure activity is the lowest it has been--EVER! We have actually witnessed a few random days later realizing that he wasn't struck with a seizure at all! I get chills writing this, because I'm not sure how many times I've wanted to say and write these words--it's finally here (and it scares me a bit--apprehension still permeates). This is not to say that he now routinely has no seizures, but his seizures are certainly less and it is quite noticeable.

Victor is generally the happy boy that I knew he would be. After years of crying and major discomfort from being literally hit in all directions, he is mostly very smiley and giggles freely at just about anything. We notice that he is more alert and certainly paying more attention to nearby stimulus. He does, however, still struggle with various things and we still often feel that our road is long and sometimes treacherous but the ride is a bit less bumpy than before.

Since our last update, we had a great Thanksgiving with family and a relaxing Christmas, at home. Again, this year we took in the Christmas spirit by visiting the Aquarium. And this time, Victor got to feel some of the fish and see the big octopus close up! Between Thanksgiving and the New Year, our schedules were busy with visits to friend's homes or having guests in ours. All in all, a wonderful Holiday Season at last!

And, recently we had the chance to reconnect with our friends, The Marshall's who are a ferry ride away. It was a lovely visit for all of us but probably more so for Bernie: he met his match with his now best friend, Dutch!

School is back in session and so is swim therapy. However, this winter quarter we slowed our calendar by taking a break from horse riding. In it's place, we bought Victor a horse riding machine called, Giddyup. We use it with him daily and his in-home therapists have also found it to be helpful. While it isn't as fun as the real horse experience, he seems to enjoy it and that make us happy.

Also, at Christmas, we purchased a Vitamix and are now giving Vic blended foods. Vic continues to struggle with oral feedings but I am glad that we finally found a way for me to get him real food instead of just formula. Of course, we still mix in a host of supplements but so far, things are working well. To help us with the oral feeding issues, we've started with a new speech therapist. She comes 1x/week and is great. We have a plan and a goal--something we've been lacking for a long while.

Another therapy that we are strongly investigating is called Anat Baniel Method. We met with a practitioner in the early part of December for 6 sessions. Please check out the website and make sure to view some of the videos...they are amazing, especially the one on "Elizabeth". We are currently grappling with how to incorporate this new therapy into our lives. Not only will it likely require us to travel to either California or New York it will undoubtedly be costly (not covered by insurance). So, we are trying to weigh our options with seeing Anat, herself.

And what would my blog update be without my 2-cents on Healthcare reform?
Days after our insurance carrier was changed, we were notified by The University of Washington that our (then) carrier was no longer being accepted. Aetna and the UW (which includes Fred Hutchinson Center, Harbor View Hospital and Seattle Children's). I believe this is the beginning of many more health care providers who are standing up for themselves in the face of insurance carriers who have dramatically decreased what they will reimburse.
Gee, I never got the option to tell a provider what I will/will not pay. On the contrary when I didn't have insurance, I was sent a bill and had to pay it. There was no negotiating.

I can't imagine what we would have done if we couldn't see our doctors! Sure, we could still schedule an appointment but we'd have to pay out-of-pocket for all of our visits which are in the hundreds of dollars range. While we're lucky to have our policy switch to a different carrier that is covered at our doctor's offices, the reality is that many families are without this advantage. In fact, many families across the country are without health insurance altogether. This means, bills pile up, often are unpaid and the medical providers are left flipping the bill. How, I wonder, can people think that this isn't related to the state of our economy? Hmmm..... Just wait for when more Haitian refugees and returning soldiers come to America with mounting health care issues!

YOU CAN DO SOMETHING TO MAKE CHANGE HAPPEN (even if it often feels hopeless with our current political climate)! Contact your local congress people, senators and reps. I have and I continue to do so! It often takes a few minutes to fill out an online form. For more info on HC reform, click here.

See Epilepsy Foundation for more information.

Also, refer to this article about generic medications. Many insurance companies will cover generics but not all generic medications are good for everyBODY!

Last, on a different note, please watch this video provided by FACES, "YOU CAN DO THIS" to learn more about epilepsy and what you can do to help someone in the event of a seizure.

Until our next update.......
Check out my new Flickr site, it includes pics from the last year.

Cheers & Happy New Year!