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!

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!

_________________________________________

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.