Photo Bomb Time!

 Birch Aquarium at Scripps

 The awesome water table at the aquarium

 San Diego Zoo

 Riding a "snow bear" as Kade calls them

 Finally got to see a panda!

 Jaguar, very close up.

 Kade is the best at cheering Clark up

 USS Midway

 Bunks.  Kade was NOT a fan.

 They loved the airplanes

 And the helicopters

 Kade was especially excited.

 The tide pools at the Cabrillo Nat'l Monument, Point Loma

 Batmobile at Comic Con

 Clark: NOT a fan of sand.

 At all.

In contrast, Kade loved the beach.

More pictures to come...

Off on an adventure!

Tomorrow the 4 of us are heading off on a journey to San Diego via Las Vegas. 

You may wonder "why Las Vegas?"  Well, we fly standby..meaning that we don't get confirmed seats on the plane unless there is extra space and usually we don't get those confirmed seats until boarding has already started for the flight.  So we have to watch the flights and make sure there's lots of availability on the ones we stand by for.

Originally, we were flying into LAX but, as it turns out, the flights are full & there is very little chance of us getting there.  We never planned on flying into San Diego because those flights have been almost full for months and are now likely oversold because of it being the week of Comic Con.

Since there are 4 of us needing seats..Clark can't fly as a lap child anymore since he is over 2..we had to find somewhere to fly into with (1) open looking flights and (2) lots of flights/day just in case things fill up at the last minute.  Flying standby is *always* an adventure.

The great part about it is that a car rental in Las Vegas is only $130 for the week vs $200 in Los Angeles.  With the cost of the fuel between Las Vegas and San Diego, we'll end up breaking even, if not saving a tiny bit.  Sure, it'll cost us an extra 5-6 hours of travel, but we'll get to squeeze in a little roadtrip through some parts of the country we've never driven before.  Very exciting, even if it is just south of Death Valley :) 

We usually book rental cars through Thrifty because they have this neat little program called Wild Card.  For the price of a compact rental they get to choose the car for you, guaranteed to have room for at least 5 people & several pieces of luggage. Generally that means an automatic upgrade.  We're really crossing our fingers for a van so we can have lots of room for all of our stuff.  I've read that the Vegas Thrifty likes to Wild Card vans...and that's the only thing we'll be taking a gamble on while we're there.  Haha.

Luckily we scored tickets to Comic Con again this year, hence our return to SD.  We're only going to the Con for 1 day, thank goodness  (haha, don't tell Jeramy I said that!).  It's a GIGANTIC production and you can't possibly do/experience everything (or even close) in one day so it's pretty overwhelming.  The boys and I will be lucky to even make it past lunch!  Even still, it's exciting.  I'd attempt to describe the Con but I honestly don't even know where to start.

The other days will be devoted to the awesome San Diego zoo, the Birch aquarium at Scripps, Coronado beach and La Jolla Cove & of course, finding awesome places to eat.  Last year we Yelped our way through SD finding lots of cool little hole-in-the-wall places & food trucks to eat. 

You'd be surprised what awesome & interesting meals can come out of a teensy tiny kitchen.  From a bulgogi burrito at Asian Persuasion food truck to a Gooch Pop burger (which I'm convinced is the BEST burger in the world) at the Gooch truck & teriyaki beef at Leilani's Cafe...San Diego has some crazy good food.  This year we're looking forward to trying some shawarma.  Don't be surprised to find a blog full of food pics when we get back.

I'm still in the midst of packing, which has been a challenge this year since I'm fitting a week's worth of clothes clothes for 4 into one suitcase.  Thank goodness for the space saving roll-your-clothes method!  Not to mention having to bring all of Clark's feeding tube accessories, which practically fill my entire carry-on.  Given that we're checking 2 carseats (never trust those rental car seats!  They're gross & could potentially be expired, not to mention the time it would take to properly adjust them for your child.) and a ginormous sit n stand stroller I figured it was best to check only one suitcase.

Back to Clark's feeding tube, this is our first trip out of state with the button.  I'm admittedly quite nervous to be away from his GI for fear of it coming out or some other problem.  But I researched and thankfully, San Diego has a children's hospital with 2 of the top 100 GIs in the US.  After learning that I felt more confident about going.

Well, I'll wrap this novel up.  Look out for the next post, it'll probably be a big one too!  Keep us in your thoughts & prayers for safe travel. 

A post of a different sort.

This post came about as an offshoot of a rant to some of my friends about experiences I've had in dealing with some of Clark's doctors in regards to his feeding tube & what goes in it.  Very rarely do I get on my soapbox here at superboyclark.com, but this is a subject I feel very strongly about & this will likely turn into a long post.  I also figure it might come in handy to some of you tube feeders out there who come across the blog.

Those of you who know me probably know that in college I majored in nutrition & dietetics.  I have always been a huge believer in the quote by Hippocrates: " Let food be thy medicine and medicine be thy food”.  For this reason, clinical dietetics wasn't exactly up my alley, as the majority of dieticians hold a very mainstream view when it comes to nutrition.

You might also know from reading this blog that Clark hasn't had any luck with a myriad of conventional formulas.  That being said, we did give the conventional route a dedicated try so I feel confident in weighing the outcomes of both formula & whole food feedings.

I have been both questioned about and discouraged from feeding Clark a whole foods diet via tube by several of his doctors.  I'd like to point out that I am not surprised in the least by their reactions, first and foremost because they stand to gain monetarily from prescribing formulas and secondly because they are greatly influenced by the sales reps from the various formula companies about the nutritional soundness of the products.  If a patient of theirs is not using formula, that's money out of their pockets, either directly or indirectly and also an insult to their beliefs about the nutrition provided by the formula. 

Third, the majority of medical doctors receive very limited, if any, training specifically relating to nutrition and the significant benefits of a whole foods diet vs a conventional diet of mainly processed foods.  (What do I mean by whole foods, you may be asking?  Whole foods are foods that come from natural sources and are largely unrefined and not processed.  Think: raw vegetables, whole grains, raw fruit, raw seeds, etc.)

The doctors have cautioned me that Clark will not receive the same nutritional benefits from a blended diet as he would from formula.  This is by far the argument that I disagree with the most.  All of the ingredients I use in Clark's blends are measurable & the calorie count is easily calculated; they are also from nutritionally dense sources which means that I don't have to enrich the blends with vitamins and minerals, they are already present.

So that you can better understand this, I will to list the main ingredients and calorie counts for both a standard conventional formula & my blended meal.

Conventional Formula  240 calories per 8oz
-water & refined sugar
-maltodextrin (a cheap, refined filler starch)
-conventional cow's milk concentrate (the human body is not designed to process the milks of other species and cow's milk, which is highly allergenic, can cause inflammation and dysfunction in the digestive tract, in addition to being loaded with harmful antibiotics and hormones.)
-canola oil (cheap fat source which is genetically modified & contains erucic acid which has been associated with heart lesions)
-whey protein (cow's milk derivative)
-added vitamins & minerals (these have to be added due to the lack of nutritional soundness of the main ingredients in the formula)



One of my Blenderized Meals 270 calories per 8 oz
-Hemp Milk (easily digestible and rich in ultra-healthy omega 3 fatty acids, protein & minerals)
-Raw Meal (a nutritionally complete meal replacement with no fillers or artificial ingredients with fat, protein and carbohydrates from exclusively easily-digestible sprout, seed, green vegetable & fruit sources, it provides 100% of 16 nutrients that are naturally contained in the whole food ingredients used to make it.)  
-Flaxseed (another calorie dense source of omega 3's, fat, fiber & protein.  Flaxseed is rich in lignans, a type of fiber associated with a reduced risk of some cancers.  It's also a great source of vitamins & minerals such as iron, zinc, calcium, to name a few)
-Virgin Coconut Oil or Avocado  (calorie dense fat sources with secondary benefits including lauric acid [the only other naturally-occurring source of which is human milk] in coconut oil which has antimicrobial, antibacterial & antifungal properties.  In addition to avocado being a great source of fat, it also contains omegas.)
-Blackstrap Molasses (carbohydrate source rich in iron, magnesium & calcium)

I write all of this to get out my frustration at the overwhelming majority of medical professionals pushing formula (for ALL ages, from birth up to the elderly).  Conventional formulas are produced with sub-standard ingredients and provide less nutrition than their natural counterparts.

We can combine low quality fats, protein, carbohydrates & vitamins all day long & call the resulting product "nutritionally complete" but, at best, it's just a shoddy substitute for what our bodies really need to thrive.  At worst?  Potentially toxic.

Think about it, would you ever suggest to a person who eats by mouth that what their bodies really need is an exclusive diet of a canned milk-based beverage instead of a balanced diet of real foods?  The obvious answer is NO.  Why then should tube feeders be led to believe that formula is the most healthy choice -or- in some cases, the ONLY choice?

Feeding via natural means isn't always easy but it's worth the extra work for the benefits it provides.

Tube feeders: I hope this post gives you something to think about & some encouragement to try a blenderized diet.  Everyone else:  thanks for hanging in there & letting me get all of this off of my chest, I hope that maybe you learned a little from it, too.

Just over a week ago, Clark had a fall.  He stood up in his high chair (so, about 4' from the floor) and fell over the side and onto his right ear.  It was scary and had him badly shaken up, with a bruise on the top of his ear.  For the next couple days, I watched him very closely for signs of trauma...you know, the usual, vomiting, loss of consciousness, weird pupils, seizures, etc.  None of that happened, I was fairly certain we were in the clear.  Until Sunday night (over 3 days later).

I reached down to touch Clark on the head and felt a soft, spongy spot instead.  That had NOT been there before.  My mind immediately went to his fall & so I called the patient advisory nurse.  The soft, spongy lumps were about 2"x3", on both sides of his head just above his ears.  They were mirror images of one another.  The PAN advised me to bring him in to the ER at Children's, which was my 1st thought, too.  Then we couldn't decide which Children's to take him to (we are very fortunate to have 2 within an hour's drive of our house and Clark happens to be a patient at both of them.) 

Because of my indecision, I called his pediatrician to see what she advised.  It was a good thing I did that because she said not to take him to the ER (phew!) since he had no troubling outward signs, instead to bring him in 1st thing Monday morning and she would examine him.

When we got there on Monday, she examined him and was pretty unsure of what it could be.  Because of his fall, she ordered an xray to check for a skull fracture.  She called me back that afternoon, letting me know that he did not have a skull fracture but to keep watching the spongy lumps and bring him in if they changed.  Also, she said to bring him back in a couple weeks and to follow up with genetics because there was a chance that they could be syndrome-related

Well, the lumps changed.  They became slightly more swollen and warm to the touch and migrated upward on his head a little bit.  I decided to email his neurologist and see what her advice would be for us.  Unfortunately, she emailed me back that she was on vacation and to contact the neurology clinic for help.  So, I called the clinic and after a day of waiting around, got a phone call from the nurse specialist at nearly 7pm yesterday to come in for an appointment this morning.

At the appointment, the nurse specialist admitted that she was unsure of what these lumps could be so she would like to bring in one of the other neurologists to feel them and get their opinion on the matter.  The neurologist came in, felt around, and said that he'd like Clark to have a(nother) CT scan, it could possibly be edema or a hematoma.

We shuffled over to Children's where Clark was to have the scan done.  In the lobby of the clinic, I had read a sign that said the children's hospital uses a new kind of CT scanner, called a Flash CT.  Apparently this reduces radiation exposure by up to 75%, takes a matter of seconds & our hospital is one of only 3 facilities in the country to have one.  When the doctor mentioned CT, I specifically requested this machine since Clark has already had radiation exposure through the CT he had last year. 

As a side note, just last week a study was in an article I read that said that multiple CT scans tripled the risk of brain tumors and leukemia in pediatric patients...so, as you can imagine, I was freaking out about radiation exposure today.

While still not ideal, he was able to have his scan done in the new Flash CT machine.  The last time he had a scan he had to be fully sedated, so that was also a concern I had.  This facility though, it seems, was completely prepared for the hard-to-restrain Mr. Clark.  They burrito wrapped him from neck-to-toe in a sheet & then had a full-length velcro restraint they wrapped around him, complete with a foam vice and immobilizing strap for his head.  He was, for all purposes, completely immobilized.  This may not seem like something you'd expect to see a mom raving about, but compared to the trauma of having to start an IV and dose him with anesthesia?  I'll take the Velcro Burrito.  Yes I will.

That whole process took less than 5 minutes, the majority of the time devoted to turning Clark into a burrito.  Then came the wait for the results.  The nurse specialist assured me that she would call as soon as the images had been read.

A couple hours later, I got the call.  She said that it was a scalp hematoma, likely caused by the fall and that it should resolve within the coming weeks.  His brain and skull were unaffected.

The moral of this story is this:  ALWAYS buckle your baby into their high chair.  Hard lesson learned on my part...in the time it takes to wash a peach, your child could sustain a really scary injury.

Clark was phased out of ECI today.  It's bittersweet.  Mostly sweet because he's met the goals we established for him.  A little bitter because well, we're just so used to doing so many 'things' related to his health & development that I feel a little abandoned.  That's not really a bad thing...it just feels weird to be done with something like that.  Overall, it's a good thing.  

The picture above is from last weekend when we went up to DFW for a life-long friend's wedding.  We all had a blast and Clark was such a good traveler, as always.  He's getting to be such a big boy, it amazes me.  Speaking of growth, he's now 22.5 lbs and almost 34" tall.  Growing, growing.  

Things are going well with his feeding tube.  Recently we've been feeding him a blenderized diet of Raw Meal, avocado, virgin coconut oil & hemp milk.  It's really been agreeing with him, he hasn't thrown up once since starting the blend.  Raw Meal is Garden of Life's meal replacement mix.  It's got lots of carbs, protein & some fat.  Believe it or not, it's also vegan (no animal products or by-products), raw and organic.  I try to do blends with the highest quality stuff I can get my hands on since it's bypassing some of the digestive process and going straight into his stomach.  I just feel better about putting healthier stuff in..you'll definitely never catch me blending up a Happy Meal®!

The formula he was using (Peptamen Jr 1.5) just did not agree with him at all.  He was throwing it up every time and so it wasn't really benefiting him at all.  Not to mention, it made him uncomfortable and the clean up got to be a total hassle.  However, after speaking with our DME supplier, I have decided to try a different formula called Compleat Pediatric which is a blenderized food formula made from turkey, cranberries, peas and carrots...among some other things.  If this works for us it will make things a little simpler and reduce our feeding costs greatly.  Organics, meal powder and coconut oil (!) really add up fast.  I'm really crossing my fingers for good results with the Compleat.

We really appreciate all of your prayers and good thoughts you send our way.  Clark has been making some great progress recently and that has made life just that much easier!

Sirena of Salado

 

I love mermaids.  Yes I do.  My favorite mermaid? -- Sirena of Salado.  Ever since I can remember I have been coming to the village of Salado to swim in Sirena's spring-fed pool.  These are some of my fondest memories growing up.  In the summers we'd come as a family and spend all day swimming in Salado creek. Once I got to be a teenager, my friends and I spent a lot of time swimming there.  Over the years, it's been a special place that I'd bring close friends & show them one of my favorite things ever--Sirena.  In high school a couple friends & I even did a project where we made a movie here. 

Sirena has a very interesting story, I actually have the book.  I won't spoil it for you, but it involves a love-sick maiden, a brave warrior & a magical catfish.  Since this is one of my favorite places on Earth, I was absolutely delighted to finally be able to share it with Clark.  Last week, I got my chance.

 Clark was happy to be out exploring.

 He wasn't too sure of the pool, but he was very interested in Sirena & the catfish.

 Here we are making our way to the sand bank, you can see Papa in the background.

 Clark was having a great time throwing rocks into the pool near the waterfall.

 Time to go...

Then, of course, we have a visitor.  

Mermaids--favorite thing.  Snakes--Least favorite.  Go figure.

Even with the snake encounter, we had a great time.  My grandparents & Jeramy were along, it made for a wonderful day.

A little update on Clark, he's been sick for the better part of 2 months.  It started off as a double ear infection & pink eye which was resistant to "the pink stuff" but seemed to improve with a stronger antibiotic.  Two days after finishing the course the runny nose came back.  I really tried to ignore it--write it off as allergies, you know...trying not be the hypochondriac mom..  But, once it got to the point where the drainage was making him throw up every meal, I knew we needed to go back.  Yesterday was the day & he's been prescribed another round of anti-b's with refills...just in case the 1st round doesn't zap it completely.  Fingers crossed that this does the trick!

He has a follow-up with GI next week and even despite the sickness has gained just about 2 pounds in the 2 months that he's had the feeding tube!  We're really excited about that, as I'm sure his doctor will be, too.

Texas in Springtime aka Bluebonnets