A New Season

Yes! We are still here! Sorry for waiting roughly three years to update all of you wonderful folks that love and support Ben. Painful situations still surround us yet we somehow keep moving forward by God's grace.Actually I had this really cool and much more interesting post the other day but the computer ate it which means a) computers and technology have a mind of their/its own  or b) I'm getting so much older I don't really know what the hell I'm doing any longer. I choose "a."

Ben is now 14! He is very healthy and thriving like a young teenage boy should. In short he is AMAZING!!! Of course y'all knew this already. As you can see our boy still loves baseball. We took this photo about two hours after his Miracle League game last weekend and now our television is now dominated by Major League Baseball or anything resembling it on ESPN. The ladies of the house are kind and sort of proud of this with the upside being I no longer have to watch "Cake Boss" or "My Big Fat American Gypsy Wedding."

There is much more to blog about including our daughter being 17 and all (which includes a boyfriend), me getting job(s) that let me contribute to our budget (a little more so than the art shows), our home getting partially renovated by some incredible folks, and of course our most awesome and courageous boy!

It is good to be back and I know Ben is happy to be here as well!

Touch Smart Magic!

Finding Nemo was Ben's first theater experience. He enjoyed it until he finally dozed off about halfway through. When Cars came out we knew Ben would have to see it in person even though it was chancy knowing that when his senses are overloaded he has a tendency to shut down - as in close his eyes and go to another world. As it turned out Ben was more of our entertainment than the movie!

The hip issues are still there even though X-Rays tell us all is okay at the moment. Keeping a steady dose of Motrin rotating with Advil seems to keep him comfortable enough to go about business as usual. Since he sees his regular orthopedist next Friday we'll have to make some tough calls about school, therapies, and other activities until then.

For now enjoy Ben enjoying his most favorite possession: his HP Touch Smart Computer. One day our not-so-little boy will be able to thank Aunt Casey in person - at least that is a huge wish of ours...

100 Percent Ben

And right on time as usual. Just when I blog about it The Kid jump-starts his motor and away he goes. Honestly we weren't expecting him to make so much progress as quickly as he did.

Ben's sleep has been interrupted the past few nights by intermittent seizures. So he's been sleeping later into the mornings than he usually does and yesterday morning was no different. I was a little bummed out because we had scheduled his therapies for noon - he's obviously missed the past couple of weeks due to the recovery from our Charlotte visit.

Ben was sound asleep when we left the house. Nurse Stacey and I decided we were going to take him regardless even if all we could accomplish was some stretching. As it turns out we got to meet his new speech therapist and that may have been the trigger to turn "the switch" back on. Ben was chatting away as we filled in some blanks for Barbara, the new ST. In fact she was quite impressed given the information found within the past few weeks.

After a few minutes, Dawn the occupational therapist popped in to let us know she was ready. I thought Ben was going to fall out of his seat trying to follow her out the door (literally I had to catch him)! We were soon introduced to a new physical therapist named Mark who will be working with us over the next few weeks. Ben has always reacted differently for male care-givers than female and yesterday was no exception. Stacey and I just dropped our jaws at just how well Ben participated! We still can't believe it.

Stacey warned Ben that he'd be in the stander today. Even though he once again slept late (more early morning seizures) he was all smiles once his day got going. Before we got him into the stander we discussed that we'd at least take it easy on him. Yeah right! Ben was already into the second hour (a new personal best) when we took him out. Our boy had worked hard too. In fact we could feel the sweat under his shirt. I told him he was rewarded with a well deserved nap.

A few minutes later I was greeted with one of those smiles only a PKS child can make. I walked in to see Ben reaching up for a hug from daddy. As of this moment he's yet to take a nap and I can still hear him hammering away on his set of musical chimes.

This is not an uncommon occurrence for our son after he's been hospitalized or traumatized. Sometimes the wait has been a month. A couple of times it was two months. But every time he somehow snaps out of his doldrums, depression, or whatever else you want to call it on his timetable and his terms.

As you can see I've had some time to fiddle with the new camera. Let's just say I have a lot of reading and study ahead of me. I'm just glad I didn't have to waste all that money I used to spend developing some really bad photographs.

There is a world of difference between 35mm SLR cameras and digital SLRs. Plus I need to brush up on my f-stops, aperture setting, and lighting situations. Evidently I've gotten lazy while letting Kodak take care of all that for me.

By the way, I will be around this weekend. Hendersonville is just 45 minutes up the road so other than tomorrow evening, I'll be making the trek home each night. So look for a post Saturday night with hopefully some good news.

Used To Bad News

For the most part Joan and I drove home Monday evening in silence. Even though I'd hooked up the portable Sirius satellite radio we never once tuned it on. We had a lot of information to digest and whatever small talk between us was trying to make heads or tails out of it. Somewhere along the way an old Boston tune popped into my mind which I knew would become the title of this post.

For the most part Ben is fine although he's not quite back to baseline. For those of you living outside the world of special needs I'm certain you are unfamiliar with that term. Consider "baseline" as a word we use for "normal" even though nothing is truly normal in our world. Normal (baseline) for us means Ben is unlikely to have a profound seizure, doesn't need oxygen 24/7, and we don't have pay attention to where the Ambu bags are located. The fact of the matter is that we left normal at the door early Monday morning.

You will notice that this entry is sans photos or images. We do have them but they might be a little disturbing to some folks. It's not that they are gory or graphic in any prurient way, we just know that certain people aren't used to looking at someone else's innards. With that said the images presented to us from Dr. Parsons were quite amazing. If you would like to see them then e-mail me and I'll try to get them to you sometime next week.

The length of our stay in Charlotte was entirely our own fault. Even with a reminder from Nurse Vicki last Friday, Joan and I made the mistake of leaving behind Ben's oxygen gear. We were so certain that Ben wouldn't need it that the thought never even crossed our minds. So while we were sitting in the post-op room waiting to be discharged and praying Ben would finally keep his oxygen saturation level somewhere close to baseline we were busy riding that wildest of emotional roller coasters - the one called Guilt.

To make a real long story short Joan contacted Ben's equipment supplier in Greenville who then got in touch with their Charlotte office. After a combination "Who's on first/You can't get there from here" routine that lasted for about two hours (cell phone service is always blocked within the bowels of a hospital) we knew O2 was on its way. Thus began another waiting game. The guy delivering the tanks eventually found us on the surgical children's floor where Ben became the hospital's shortest admit patient. Ben's nurse was literally filling out his admittance and discharge papers at the same time. Our insurance provider is going to have a dandy time sorting through that mess.

So what did we find out? Several answers to some questions we've had for a long long time and none of them are good. Neither are they disastrous. The bottom line is that unless there is something short of a miracle, Ben will be wearing a trache the rest of his life. Using Dr. Parsons' words, "Ben is now considered a long-term trache patient." The only positive spin we can put to it is that should Ben require another hospitalization due to serious illness he has the best possible avenue to his lungs.

There are two primary reasons for it. Dr. Matthews was asked to participate in the procedure for one purpose only: find the reason for the severity of Ben's nasal curvature. During our office visit last month he suspected that it was related to one of the more profound anomalies Ben was born with. Indeed he has a deviated nasal septum due to his cleft palate (scroll down the page I've linked to read more about it). While his right nostril is pretty close to normal the left side has deviated so severely that it is completely blocked.

One of the things we've held back from most of you is that the deviation can be repaired but it isn't easy. Ever know someone that got a nose job? Essentially your nose is broken; nay, actually shattered. Dr. Parsons described it using a grotesque but very accurate analogy. The bones end up the consistency of the shell removed from a hard-boiled egg. The nose is then reformed by hand like you would mold a piece of clay. Had we discovered the deviation was preventing the removal of the trache then Joan and I would be facing a very difficult decision. But that is not the case.

The primary reason the trache will remain is that Ben's vocal cords are paralyzed. In Ben's case the paralysis is considered partially closed. Because the vocal cords are located just above the trachea his airway would be compromised should the hole be closed. We got a pretty good example in the post-op of what could (and would) happen the first time Ben faced something like a cold without a trache. One other issue related to this find is that Ben will always receive his primary nutrition via his feeding tube. Always.

So we are unhappy and very disappointed with the outcome of our trip. We'll readily admit that we were very excited about life without trache changes, the Passey-Muir valve, and endless suctioning. We're even more disappointed that Ben had such a bad reaction to the experience. At the moment he is still on a small amount of oxygen. Yesterday after one particularly bad seizure I had to bag him. Basically it's the same as giving a normal person mouth-to-mouth resuscitation. And there have been fewer of those giant smiles he is known for.

There was one moment in this whole experience though that told us the most about Ben. For the first time ever Joan and I were without a shadow of a doubt convinced that Ben is far more advanced cognitively than some people would give him credit for. We've seen enough in our household to know that but Ben understands one of the most basic of human emotions...fear.

Right after Parsons prayed with us (how many surgeons do you think does that?) about the procedure, he announced that he was ready to take him back. Joan and I both turned to Ben to find him staring at me furiously shaking his head back and forth telling me no. There was a look of panic on his face that I don't know I've ever seen from him before. Our hearts broke at that moment and something inside me told me we shouldn't be there.

Six months from now Dr. Parsons wants to have another look at the vocal cords. You can bet Joan and I will think much longer and harder about any further procedures at this point.

Update: Dammit. We just had to move Ben to his "sick plan." He's now running a fever and has some pretty nasty secretions from his trache. I should've followed my instincts and just carried him out the O.R. door Monday. The nightmare continues...

Sunday Smiles

Those smiles are hiding a bit of nervousness though. Tomorrow morning is our trip to Charlotte which might be the beginning stages of Ben living without a trache. If all goes well we'll have updated positive information about Ben's airway, lungs, esophagus, ears, and nasal cavities.

Ben will be put to sleep. Afterwards Doctors Parsons and Matthews will take a good long look at everything involved with Ben's breathing. More than likely Ben will come out of the procedure with a brand new type of trache kit (he currently uses a Shiley) until everyone feels comfortable with him using his own God-given equipment. While we are excited putting a neurologically abnormal child under general anesthesia is always tricky which makes us nervous.

Ben has had a wonderful day since his Me-Ma and two cousins from Tennessee have been by to visit. We think this is a good sign because we're convinced he knows something big is about to happen. It's not that often Jessie leaves for an overnight trip so early in the day.

Even though it has been at least 2 and half years since anything this invasive been done on our son Joan and I have fallen back on the old habits to get "our game faces on." She's been furiously cleaning the house. I went to grab a beer a few minutes ago and I saw her brandishing a toothbrush while cleaning some cabinet doors. I sat and watched Jessie, Amelia, and Ella swim until the afternoon showers came so now I'm searching for something else mindless to do. Even though I need to work on some paintings my concentration just isn't there and it won't be until after tomorrow.

The procedure is scheduled for noon EDT tomorrow. Send some good thoughts our way; even better, say a prayer. Monday will be a long day. Hopefully it'll bring a new beginning for us.

Update: Monday 1:30 PM. I'm using a computer in the outpatient waiting room. Is has been a long day already and he's still in the OR (an hour & a half now). So far, so good we've been told. Ben was a trooper as well although he about broke our hearts before going back. When he saw Dr. Parsons in his scrubs he looked back & forth between his parents shaking his "no." He knew exactly what was about to happen. Thanks for the kind thoughts and words.

Update 2: Monday 9:20 PM. Carolinas Regional is only an hour & a half away but we just got home. that should tell you a lot. This day has been much longer and disappointing than anticipated. Ben is fine for the most part. He's pissed off and sore but happy to be far away from a hospital. I will provide more details tomorrow after some much needed rest. Again thanks for keeping us in your thoughts and prayers.

Ear, Nose, & Throat

Sometime in the coming few weeks we'll be carrying Ben back to see Dr. Parsons. Ever since the initial tracheotomy the goal has been to eventually remove it. Over the past two or three years Ben has increasingly shown an ability to breath through his mouth and nose.

One of our main concerns is a fairly new one. The photo to to your left doesn't quite do it justice but the bone growth of Ben's nose is moving toward his right side. Oddly that is also the direction that his severe case of scoliosis has taken. Evidently we can chalk up another of his anomalies to the lack of white matter in his brain.

The slant is now so evident that Ben looks like a boxer whose had his nose broken and never had it reset. Ironically breaking his nose could very well be one of the options we have to choose from to remedy the situation. Our hope is that we don't have to go that far. Regardless Ben will be going under anesthesia in the near future which is not something we look forward to but we have the greatest trust in Dr. Parson's care for our child.

Essentially the good doctor will be looking down his airway to his lungs via his mouth. He'll also take a good long look into his ears and of course his nasal passage. If everything goes well then we might finally achieve that ultimate goal.

The really humorous part of all of this is the memory of Parsons breaking the news to us in the NICU that Ben would have to be trached. At the time Joan and I were devastated. We couldn't even imagine having to care for a child with a hole in his neck. Nowadays we can't imagine Ben living without that hole in his neck! As Dr. Parsons told his nurse yesterday, we're preparing to take away Mom and Dad's security blanket. I'm thinking I might just have to revert back to thumb-sucking.

Good Times

While y'all oooh and aaah over my mom holding her newest granddaughter (and she is beautiful) I'll fill you in on some wonderful things happening with Ben.

Tomorrow morning our boy rides the bus to school for the very first time! Of course Nurse Lisa gets the honor of accompanying him since she's getting paid by the school district to take care of him while he's there. This is the only time I wish one of the nurses would play hookie from work.

Speaking of nurses we welcome back Vicki and Jenny! They will be rotating shifts those hours we haven't been able to fill since Jenny got moved to another case. This is good news for me and Joan since we won't have to scramble to find someone to watch Ben those weekends when I leave on Thursday.

Last night we had a funny incident occur when I told Joan about meeting Ben's new teacher yesterday. The conversation went something like this:

Me: "Ben had a great day at school today."

Joan: "Oh really? What was so great about it?"

Me: "Well Ben and his classmates got to paint with fluorescent paint in the multi-sensory room {note: this particular room is lit by black light so we're talking a glow-in-the-dark, let's play some Pink Floyd experience} and we met his new teacher."

Joan: "New teacher? What was her name?"

Me (pausing for a moment): Uh...Stan. Stan Miller."

Joan (finally looking up from her computer screen): "Huh?"

That's right. Ben has a male teacher! Although I didn't get to see the initial introduction I'm certain Ben was thrilled about from Lisa's description and his typical response to having older males around. There's obviously nothing wrong with having female care-givers its just that field of employment is dominated by women much like the teaching profession. Given the fact that Ben has responded so well to therapies that I've been involved with we are excited about the potential outcome(s) for this school year!

And then finally I picked up the paperwork yesterday that will allow Ben to start getting another two hours of out-patient physical and occupational therapy each week. In fact I made his first appointment for a week from today. An added bonus is that the facility is only about a mile from our house.

We had been getting in-home therapies for him up until late last summer when the only provider in our area dumped their pediatric program. Since then we've been on our own for the most part. The school does provide therapy but with so many kids needing it he has been receiving only about a third of what he was getting at home.

This news is probably the most exciting in regards to Ben's future. We were highly complimented for the progress Ben had made over the summer. Can you imagine what he might accomplish once he starts working with some folks who actually know what they're doing? Sitting up by himself, standing, walking... the possibility seems so very real now!

I just want to conclude by saying none of this could've happened without the support of everyone that reads this blog. Whether you have bought artwork, said a little prayer, sent words of encouragement, or just passed along our story to someone else, all of it has made our family more determined to improve not only Ben's life but the lives of all the other exceptional families we encounter. Thank from the bottom of our hearts.

Part of The Journey

Using the analogy of being an artist I often paint our family picture in my own colorful and exciting style. Although I've shared some difficult moments through the blog I would think that for the most part the "attitude" and aura of this site is fairly positive and upbeat.

I think there is a clear reason for that fact. Since I began this blog last fall our Ben has remained very healthy and continues to make very good progress in reaching cognitive and physical goals we have set for him. That has not always been the case.

Now don't get me wrong. We definitely want Ben's story to be a beacon of hope for those exceptional families that are just beginning The Journey or are still facing many uncertainties. But part of The Journey is occasionally reflecting upon where we've been and just how far we've come. The road we walk is very difficult and often sad.

The truer picture was painted a few days ago by my friend Kelly at Jenelle's Journey. I want to thank her for expressing her emotions so well. Indeed all of us parents of special children have felt the same way or may even be feeling it now. There's nothing wrong with being honest. In fact admitting our grief is truly a cleansing experience.

Remarkable!

Would you believe the child to the right had surgery today? Sorry it is somewhat out of focus but Ben is dramatically telling us about his hospital visit. To say he's been rather animated about things is an understatement.

Things could not have gone any better! Thankfully Lisa had to watch the clock while doing her nursing notations. It was exactly 15 minutes between the operating room door closing and Dr. Chandler entering the waiting room to tell us how well Ben did. It was exactly one hour and five minutes between the smile the he gave me when I kissed him before surgery and the smile Mom got in the recovery room.

Ben woke up talking this morning and treated the outpatient staff at Greenville Memorial Hospital to a full dose of huge smiles and laughter. He definitely made the most of his chance to flirt with the cute nurses. Other than being the slightest bit fussy shaking the cobwebs of the anesthesia he's been his usual happy self.

Many thanks to those of you who thought about us this afternoon! It's good to occasionally get proof that prayer works. Know that Ben sends to ya big droolly hug and smile tonight!

Out-Patient Surgery Tomorrow

I just want to remind everyone to keep Ben in your thoughts and prayers tomorrow afternoon. Although it's a very minor procedure considering the many other things Ben has faced in his short life nothing is ever considered "routine" when it comes to an exceptional child. Ben is scheduled for the operating room at noon (EDT) so good thoughts and prayers are most appreciated around that time.

Ben had another wonderful day with Miss Jenny which included starting some new paintings (great pictures and video coming later in the week) and enjoying story time on our front porch surrounded by the birth of Spring and 80 degree temperatures. Times are good for us right now so we're hoping tomorrow is another good day with the removal of the "cyst" on Ben's thigh.

I'll report back here tomorrow afternoon to let you know how things went. Hopefully it'll be uneventful as well as a piece of cake and will have to strain my brain for a good story. I think Ben is a little worried. He does know that something is up. In fact he's been very clingy with me tonight which is something usually reserved for Jessie in the evening hours.

Perspective

Any trained artist will tell you that perspective is a fundamental element of the creative process. Basically (and this is a very basic definition) it is how objects appear from one's eye in relation to distance and location. For instance, if were to do an architectural rendering I would make darn sure that every edge of any linear object (the eaves of roofs, window sills, tops of a door frame) would all intersect at some finite distant point. Being more or less an impressionist painter I "distort" perspective by twisting and turning the objects upon the canvas in such a way to give subjective meaning to the completed artwork.

And it is that fundamental element that sometimes only another artist can identify and speak volumes about to a fellow artisan. This generally occurs when a painter such as myself gets stuck in a rut, runs into a composition problem, or just needs a creative kick in the ass. We seek another trusted comrade who can reinterpret some of those fundamental elements so that we may move forward with our art.

Such was the case when I opened my e-mail this morning. My dear friend, Conni Togel, shared some thoughts with me in regards to A Work of Art. I received permission from her to reprint most of it here because I honestly believe all of us can benefit from her wisdom. so I'll let the teacher speak:

So sorry to hear about Ben’s health problem at the moment – give him an extra hug and then go have Joan give you an extra hug, right after you’ve given her and Jessie an extra hug.

Questioning God is not a bad thing - in fact, I tend to think God is intelligent enough to prefer inquiry to ignorance.

I cannot imagine quite what life is like for you, though your blog really does bring a lot of heartfelt info to the world about living with an exceptional child – btw: Ben seems to be exceptional, exceptional or not.

And THAT is where most likely your “why?” answer will be found: special people get special assignments (and special kids) - your situation is indeed a toughy, but through all of the medical things, and financial things, and the stress caused by the combination of all of the above, there is one thing that shines through and not only touches your heart, but now that you have your blog, also that of many others: Ben and the love his family has for him. If that ain’t a good reason for “why” then I don’t know what is. Because Ben. Enough said...

I’m sure you would have chosen a different life situation for Ben even if you would have had to give your life to make it happen – but how involved in Ben’s life and in your family would you have been if he had been “normal”? See, you might have missed just how exceptional Ben really is if he was just a normal kid next door. Jessie and Ben would have fought like cats and dogs over the remote control of the tv, he might have left his dirty socks stuck in the couch cushions, might have forgotten to put the toilet seat down, might have lived solely off of Cheetos and Mountain Dew, Joan might have turned into a nagging wife (not many women don’t after while of being married to a guy – and yes, any guy :o))) ), and you might have become a 9-5 suit in an office somewhere, ...probably not, from what I’ve been reading about you and your family, but you get the idea...

Instead, Ben came along – and gave “normal” a whole new spin. Not always a fun spin, but spinning around will always give you a chance for different viewpoints of things. And it gives others a chance to see you from different angles as well – not that bad of a thing, really.

So when you start asking God “why me?”, my guess would be: because God shines through Ben, and he wanted it to shine on you. Just enjoy the warmth, and see how the shadows make the colors brighter.

Enough preaching to the choir here – don’t know if this was any kind of help at all, but those were my thoughts about your post yesterday.

I'm looking forward to seeing Conni and her husband Peter on Thursday.


Ben Update: He is doing remarkably well. His doctor agreed with me that the shunt was definitely not the culprit and that Ben evidently was hit by the same stomach bug that has been filling up his office for the past week. He did not see the need for IV fluids and Nurse Jenny did an excellent job of increasing Ben's fluid intake throughout the day. Although the feeding pump is set at a slower rate of feeding than normal, Ben is now receiving his normal mix of nutrition.

He's been playing and laughing this afternoon. In fact we're having a hard time convincing him to rest. No seizures. No dry-heaves. Thanks for the prayers. Obviously they work.

Ben Update - Monday

Joan drew the first shift last night per Ben's choosing. That was unfortunate for Mommy but much good came from it. Those that are closest to us know that Ben generally gravitates to me when he's not feeling good or wants comfort in facing a new situation. We attribute that to me pushing Ben's limits and the sheer fact that I'm around him so often. It was indeed heartwarming to see Ben put those little arms up toward Joan last night as if he were saying, "I need my Mommy tonight."

Long story short, the little guy basically dry-heaved through the night. Although he had two significant seizures neither were as powerful as what we saw a few weeks back. By the time Lisa arrived this morning Ben was calmer and actually trying to function as normal. He's been able to digest Gatorade and a little ginger ale without the nausea; not a lot but enough to keep us from heading to the ER for IV fluids.

Another strange but positive change: the darn shunt is now working normally as far as we can tell. Even so we're headed to the pediatrician tomorrow morning for some blood work and to schedule an appointment to meet with the neurosurgeon who installed Ben's shunt just in case. At this time everything is indicating stomach virus. In fact I discovered this afternoon that there is a pretty wicked one that hit Jessie's school late last week.

Thanks for the good thoughts and encouragement. You just don't know how meaningful they are. Trust me, when and if the time comes they will be reciprocated.

Ben Update

Ben started throwing up again today along with the expected seizures. Joan's worst fear is a shunt malfunction and I'm beginning to believe it just might be true.

There is a "valve" just behind his right ear that only I have the stomach to check and I can't make it drain like it normally does. If this is the case then Ben has to go back to the hospital for a new shunt. The idea of him going under the knife again scares the living shit out of us.

For information sake the shunt drains extra fluid from Ben's skull into his stomach. I've hopefully thought all along that the shunt was not not the problem. If that is indeed the culprit then Ben is in for another pain-in-the-ass hospital stay right as the art festival season kicks in.

That is the least of my worries but it's a big part of our income. Sorry for the F-bomb but FUDGE!

****My Spew****

Why does God do this to His most precious? I'd gladly take the suffering on my own. I've sinned against Him more than Ben ever will. Is this my punishment? I know He exists but does He really care? Jesus teaches us that the little ones are His favorites. It's no secret that God is a shit in my book but how can He let shitheads like name-your-latest-child-molester roam free and parents like us suffer and suffer and suffer? I don't get it. I really don't get it.

I really try to keep from being agnostic but it continues to amaze me how God goes to great lengths to prove me wrong. What an incredible douche bag. I honestly hate am very pissed off at Him. Whatever It is I really don't want a part of it anymore for the time being.

Happy Valentines Day!

Here's the summary:

1. Ben was a trooper and made it until 1 AM giving Joan an extra hour of sleep this morning before having to take her shift to arouse Ben.

2. I ended up awake early anyway to keep Ben somewhat alert while Joan got herself and Jessie dressed. We also checked the abscess on Ben's thigh. It had made it to the surface of his skin. This was a good thing.

3. Joan and Lisa took off for the EEG. I'm not sure how many of these Ben has had but he's slept through every one of them including today's. By the way Ben also slept comfortably last night.

4. Joan, Ben, and Lisa then made their way across town to see the pediatric surgeon. By this time the abscess and "blown" so there was no need to have it drained.

5. After receiving the care instructions for the sore it was back over to the neurologist to discuss the seizures and the EGG. For the first time there was a slight indication of where at least one of the types of seizures Ben has been having is originating from. We also had gave a very descriptive account of Ben's motions as he is seizing. It turns out that this verified the EEG findings for the milder type of episode but also gave the doctor a good indication of where the stronger seizures are probably coming from. We will now consider a couple of different drugs Ben could take should the seizures continue.

6. Vickie, you'll love this. Ben completely entertained Dr. Morales! He smiled, he laughed, he tried to get up, he "talked." For those that are unaware, this was the neurologist that wrote Ben off just before he turned two as being nothing more than a vegetable. Ben even made Morales laugh.

What does all this mean? We know absolutely nothing still about what triggered all of these episodes about ten days ago. Was it the teething? The abscess? A virus? A growth spurt? Chances are we'll never know. The good thing is that we do now have a plan and a trustworthy neurologist back on our "team."

The plan now is to see if the seizure activity decreases or at least stabilizes over the next few days and weeks. If they continue to persist at the current level we will have no choice but to begin drug therapy. We're still not real happy with the thought but it will be best for Ben and the rest of the family's sleep patterns. We've also had our fears alleviated that the seizures might cause more neurological damage to Ben.

All in all Ben has had the best day he's had in about two weeks. It was tough for me and Joan to squeeze in that short nap while listening to Ben and Lisa laughing and playing downstairs. I guess we'll call those Valentine's Ear Candy.

Long Nights, Impossible Odds

It's been a very long day and it's not over. After another night of some of the strongest seizures yet we made the decision to move forward with a more aggressive approach in getting the awful episodes under control.

With Jenny here today I was able to get some much needed sleep from about 8 until noon. It's now been two days without a decent meal for me or Joan. Our house is a complete wreck and neither one of us has the energy to do something about it.

We decided to discuss all of our options with our pediatrician first. Of all the doctors that have worked with Ben, Dr. Flanders knows as much about him as Mom and Dad. Today's visit was actually our second with him in the past few days. Joan took Ben in Saturday to have him checked over and to see if the teething issue was indeed the main culprit. We also wanted to get a medical opinion on a small abscess on his left groin. He gave Ben an antibiotic for it and we treated the area with warm compresses throughout the weekend.

Today the area looked much worse and by the time of his appointment he had a small fever. Dr. Flanders suggested checking Ben into the hospital an idea Joan and I are very much against at this time. Flanders had very good reasons for us to consider it which mainly has to do with how quickly we can see the neurologist. It usually takes several weeks to get into see him.

In the end our pediatrician is well-liked and respected in our community. He made some phone calls, pulled his usual hat trick, and we're now full of morning appointments tomorrow. The bad news is that I will up late into the wee hours to make sure Ben gets only 5 hours or less of sleep overnight. Evidently they want him very "active" for his EEG tomorrow. He's than off to see a pediatric surgeon to discuss draining the area in his thigh. Good times, friends, good times.

As always we would appreciate some good thoughts and prayers from anyone willing to send them Ben's way. I'll obviously give an update again later tomorrow. Who knows? I might even stay up all night posting dirty jokes here...

Oh yes, I wonder who can be the first to guess where the title of this entry comes from? I'm gonna lay odds that KimmyK will guess it since she's so close to my age.

On the Palette

Brilliant Blue: Interesting night at the Grammy's yesterday. It was so cool to see The Police back together again. Stewart Copeland and Andy Summers have lived in the shadows of Sting for twenty years now and have never garnered the notoriety they should have for making the band what it was which is nothing short of brilliant.

Putting the trio together lit a fire under Sting's arse for the first time in awhile (twenty years maybe?). I own nothing Sting has recorded solo and probably never will. I'd love to see them in concert again but ticket prices have gone through the roof since the early 80s when I first saw them live.

The rest of the show was extremely disappointing with the exception of the trio performance of Corinne Bailey Rae (Lord, she is HOT!!!), John Legend, and John Mayer. Whoa Nellie! That was THE highlight of the night!

As for The Dixie Chicks, I have nothing good to say about them. I truly despised their smirking attitude throughout the night. I'll be honest and say that I'm not a fan of George Bush but as entertainers, they have a job to do which is entertain. They didn't need some snide political remark to excite their fans in a foreign country. Their talents and music should stand on it's own. The backlash they received was justified and very much expected. I find it disgusting that they have essentially flipped off the country music industry which made them famous.

Best line of the night goes to Jamie Foxx who quipped that Snoop Dog had left the building when he heard The Police were there.

Acra Blue Violet: Ben's seizures are becoming more frequent. In fact Joan took him to our pediatrician on Saturday to check on the situation. A long story short, we don't know what is triggering them. I will freely admit that I'm a bit frightened at the situation at hand.

Ben threw up everything he ingested yesterday afternoon. Today he alarmed Lisa, one of our trusted nurses, several times with episodes that included him turning blue due to lack of oxygen in his blood stream. He's now back on full-time monitoring so we can tell if he's in trouble. This is very hard on me and Joan. This is actually the first time in two years we've had to take such a drastic measure to insure Ben's health. The little guy is not his normal self and it greatly concerns us.

More than likely we'll be visiting a neurologist here locally that I'm not very fond of. He is the one that pretty much wrote Ben off when he was two, given the MRI information. I would prefer to not be there when he sees my son but I have way too much at stake to hear things second hand.

Red Oxide: It's hard to believe that I'll be setting up my first show of the year in a little over two weeks. I'm very excited but at the same time I'm a bit worried given Ben's condition at the moment. We need the money but I certainly don't want to put undo pressure on Joan knowing how much we need her job and more importantly her health insurance. We need some good thoughts these days and I know most of you will gladly do that.

Cadmium Red: I do want to say how incredibly impressed and inspired these days from reading your blogs! Honestly I can say that I'm quite envious of your writing abilities. I feel honored to be included on your blog rolls. I can also honestly say that I've been challenged as a father, husband, son, artist, friend, and acquaintance even more so than when I was in college. I just want to thank you for being the wonderful people you are and I will always appreciate your thoughts and words!

Huge Ben Update

Part of Ben's syndrome includes a late dental eruption. It is now looking like Ben's molars are finally peeking through his gums. Tonight he was beginning to show similar symptoms as last Thursday and Joan pondered this theory. BINGO!

Ben is smiling and ready for play despite needing sleep now. The simple stuff almost always defeats the complicated. I'm just happy to have the return of my smiling boy!

A Much Better Day!

Slowly but surely Ben is returning to his happy fun-loving personality. Quite honestly we've all been worried that the severity of his seizures the other night created some new neurological problems. I guess we should've listened a bit more closely to Nurse Lisa yesterday.

Those of you who've had a migraine headache can appreciate that comparison with Ben's episode the other night. When your body has experienced that kind of trauma it's going to take a few days to return to normal. Some other good examples: whiplash, stomach pains after being severely nauseated, a panic attack, even a good old bump on the noggin leaves a bruise.

Anyway, Ben is relaxing in his giant football beanbag chair watching cartoons. Yours truly is working on some paintings while waiting for some guests to arrive for a "studio tour." They are awfully excited so I've chilled a bottle of wine to alleviate their disappointment when their tour consists of visiting our den, Ben's therapy room, and our bonus room. I've throw some old brushes and empty tubes of paint around the house just to make things look a bit more artsy. I have a beret somewhere in my closet but it's currently stuffed to the gills with half the stuff that was residing in the floor of our bonus room...er...studio.

Thanks for the posts and good thoughts for us the past few days! It truly means a great deal to me. I think several left some questions which I will get to later in the weekend.

***Update***

What a terrific afternoon I've had! The studio visit was an absolute blast! I wanna thank Andre and Colleen for visiting us today. Yes, I sold some artwork but the best part was making friends so easily with two awesome folks. They made me feel like I was entertaining family.

Rough Day Too

This has been an extraordinarily difficult day. Even with the two hour delay for school this morning allowing Joan and Jessie to catch a few extra winks we all are absolutely exhausted. None of us got any real rest. At two thirty this morning we had Jessie up trying to sooth her brother's panic. It was not grasping for straws as was proven to us a few minutes ago. I guess this is the first time that deep-seeded connection they share couldn't break through the chaos in Ben's brain.

Joan just got home from work. She's in the midst of a five-day crunch so her weekend is now booked. I can't imagine how tough today has been for her. To have the stress of her job on top of the worry for her baby just really isn't fair. But of course nothing in this life really is fair.

Both of our stomachs are shredded. Ben has not returned to his "base line" yet. We're hopeful that a good night's rest will do us a world of good but it's so difficult right now to look into his eyes and see confusion. Ben's eyes are usually so full of life and he typically is always a touch or a scratch away from The World's Biggest Grin.

The only relief we've had was just a few minutes ago when I told him how Jessie would be home soon from a friend's birthday party. That drew the first and only huge smile of the day. See why we awakened Jessie at 2:30 this morning? Mom and Dad certainly could do no worse.

Bad Night

It's 6:30 AM. I'm getting ready to turn in for the night...morning...whatever. Ben woke us up literally screaming sometime after midnight. For the next couple of hours he had some of the worst seizures we've ever experienced. I finally let Joan give him Valium sometime around 2:30. About a half hour later he actually smiled a few times before he dozed off.

Mom's instinct was to stay with him but she's got too much on her plate at the office so I stayed with my little guy. He continued to jerk and twist for the next few hours. My fear was that the drug wouldn't be able to stop the seizing completely. He finally feel into a deep sleep maybe about an hour ago.

I'm looking out over our neighborhood from my office window. They say it's always darkest just before dawn. It sure looks like it to me.