New Neuro.

We have a new neurologist!

There was no official "Will you be our neurologist?" proposal. This particular doctor has seen Christian in the past and remembered him and we've been seeing his colleague, another epileptologist who has been awesome, since Christian's VNS placement for increases. So we weren't exactly new to him.

It went something like this:

Dr. L.: "We can run into some trouble when there are too many neurologists involved..." (Looking through his file)

Me: (Interrupting) "That's why I'd like you to oversee Christian from now on."

Dr. L.: "Okay. Yeah, that's fine."

Me: "Okay."

And the deal was done. All of Christian's records are already in a central system so there are no problems there. The new doctor has access to all of it.

I told him about my philosophy with medication and how I'm not opposed to it, it's just that nothing has worked. He understood and we discussed some future possibilities early next year that we might try. But more to come when the time is right. I need to do some research first.

Dr. L. also increased Christian's VNS strength slightly, scheduled an appointment for February, and commented about Christian's super cool One Fish, Two Fish, Red Fish, Blue Fish Dr. Seuss shirt. He was so excited about the shirt that he stopped everything to show the intern. Oh, and he also taught us both about a reflex in little ones and older people. When you tickle his palm, his chin quivers. No, I didn't know that! Neat!

I was thinking about what my big problem was with the last doctor and what I can do differently in the future after the appointment. Part of me wants my opinion respected and I want to be the final word and have all control over my son. But the other part of me wants the doctor to take some ownership and lead us with suggestions and new ideas. It's been really hard for me to let go and allow that to happen with neurologists. And really, it's a trust issue. I just didn't trust the former neurologist with decisions regarding my son. So I could never really let go a little. Furthermore, I never felt fully trusted by him. I don't think he ever trusted that I would follow his directives. And maybe I wouldn't. No trust. In contrast, I fully trust our pediatrician, and I feel fully trusted by him. I know he respects me as a parent and he's not afraid to offer suggestions, whether I take them or not.

So one of my New Year's resolutions is to work on trusting this doctor and seeing where that takes us.

Doctor Shopping

Since we're in the mood for updates....

We have an important appointment tomorrow afternoon. We've waited three months and tomorrow is finally the day.

We are in the market for a new neurologist. We've had the same one, pretty much, for the last two years. But it's time to move on.

Why are we moving on? Well, anyone who knows this particular neurologist often has something to say about his bedside manner, his lack of personality, as well as mentioning all of his other unsavory attributes. Let's just say he rubs a lot of people the wrong way. That was evident upon our first meeting when he told us in so many words we should more or less consider pulling the plug on Christian if things should go down hill. Consider us rubbed wrong.

Since that blessed day, I've learned a lot. I've learned to respect him in a funny way. He's very smart. And he's definitely an acquired taste. It's either his patients love him or hate him. More often then not, it's the latter.

I don't fault him for his bedside manner. I don't need coddling anymore. I've dealt with enough doctors and specialists to know it's their jobs to state the facts for our own good. Period. I can't get hung up on whether someone is nice to me or not while doing it.

The reason we've decided that it's time for a change in neurologists is because Christian's current neurologist has had to refer us to other neurologists twice. Once, when I inquired about the keto diet. He admitted he didn't have experience with it so he referred us to a neuro in Phoenix. The second time I inquired about the VNS. Again, he had limited experience and would have to refer me elsewhere. I've asked him about experimental drugs and he has limited knowledge. Our relationship with this neurologist has turned into an ends to a mean. He prescribes medicine and administers botox. End of story.

The point is when it comes to the treatment of kids like Christian, he practices medicine in a box. Christian is outside of that box. And he needs outside of the box thinking. This doctor's main focus is to maintain Christian. I need a neurologist who seeks to progress Christian. I didn't know there was a different until I met the neurologist in Phoenix who oversaw the keto diet. She was assertive in that we couldn't just accept the current circumstances, we had to seek out other options for the best Christian we could get. (Light bulb!)

Other reasons we're choosing to make the move involve this doctor just not expecting anything from Christian. He hardly knows him and he's been his neurologist for over two years. And he has never, ever said anything remotely positive about Christian. No "He looks good!" No "He's doing well." Maybe that's not his job. Maybe that's coddling. But people who truly know Christian know that he is doing so much better and don't hesitate to say it. Note to neurologists: Parents are looking for your acceptance and validation of any progresses, no matter how minute, whether we want to admit it or not.

So we have an appointment with the neurologist who wears the big NO SEIZURES pin on his lab coat. He's the doctor who initially evaluated Christian for the VNS. He's an adult neurologist who sees some children and his team of epileptologists has been amazing.

If for some reason this doctor tomorrow can't take Christian on as a patient, we'll go with plan B - the awesome neurologist in Phoenix who introduced me to the idea of progress in the first place.

I'm praying we'll find a good fit and that tomorrow's appointment will be productive in our search for a new neurologist.

Stay tuned!

Updates on Blendy-Blends

Blending has become a way of life in our household and I'm happy to say we are at 100% blends for Christian. That means he gets whole foods, blended and pushed through his tube all day, every day.

This calls for an update on our blendy-blends. That's what I call them - Blendy-blends.

What?! It's cute!

The last update I gave on blends was that Christian was at about 80% blends. Meaning he was eating a full blended diet during the day and then about 200 calories of a slow, continuous feed of formula over night. Well, Christian finally put on a few pounds, to where I was comfortable taking his over night feed away. I kept this overnight feed for the calories and I wouldn't hesitate to add it again if I needed more calories in his diet again and he wasn't tolerating enough during the day. But his body does need to rest at some point. Now that the overnight feeds have been discontinued, Christian's body confirmed that it, in deed, appreciates the rest, because now he's sleeping so much better! And for more solid blocks of time over night. I didn't even give him melatonin last night!

More discoveries about blendy-blends:

Pumpkin has been life changing as far as regularity goes, if you know what I mean. I add anywhere from a 1/2 cup to a full cup of canned pumpkin (Libby's or store brand, but 100% pumpkin). It's about 80 calories a cup and it has helped Christian's digestion like nothing I've ever seen, other than starting the blended diet in the first place. No more blow outs, Miralax! We don't need ya!

We tried coconut milk in the box from the health food section of the store. It was suggested by another smart, blending, Mommy friend of mine to try the coconut milk in the can from the Asian food section. It had almost triple the calorie count for about 1/3 the volume. That's like calorie gold. It also has a high iron count. Well, that would seem to be great, right? Apparently, the iron was a little too high for Christian and it constipated him! Coconut milk is supposed to do the opposite! Google it. I swear, it will say people use coconut milk to fight constipation. Not for Christian. It caused it. So we've moved away from the coconut milk, unfortunately.

As far a dairy goes, we don't use a lot of it, but we dabble. Christian will get two scrambled eggs once a week or so. He also gets that yummy Dannon Greek yogurt that I want to steal every time I smell it. I will also mix a little milk with Christian's oatmeal, instead of water just because that's what I do when I eat oatmeal and it tastes better, so I'm doing the same for Christian. I'm just trained that way.

Oh yeah, forgot to mention, my son is turning into a little vegetarian (the kind that eats eggs, see above). It seems that Christian has a hard time with meats I call heavy, like pork chops and beef. He does a lot better with the already blended version found in baby food. So that's what I'm sticking with. He seems to get a lot more digestion stress, upset tummy, and acid reflux when he has heavy meats and starchy food like stuffing or potatoes. He can pretty much handle all fruits I've given him - oranges, apples, bananas, strawberries, tomatoes, and blueberries. No problem.

Fatteners I use to increase calories content are honey for the fruit blends and olive oil for the veggie mixes. It's an easy 100-200 calorie increase. Peanut butter is a great calorie hike, but we tried it early on and it was a little too heavy and rich for Christian and I distinctly remember what peanut butter smells like coming back up. Good times.

I think everyone has a "safe" or "go to" blend. Or what they would call a base blend. Ours is banana, avocado, and apple juice. We can add fruit, grain, or yogurt mixture to it and Christian can pretty much tolerate it.

We use baby food. Why not? It's already blended and has the calorie count right there. Easy! The best baby food mix in I've found is from Beech Nut. They have super high calorie counts on their fruit mixtures. And they're all natural, no added sugar.

By the way, the worrying and fretting I did about Christian's vomiting was short lived. He tends to cycle into vomiting when he's sick, and getting better can take longer for Christian. For me, it still feels like a failure every time he vomits because he sometimes just does it out of the blue and I feel like I can't figure it out. That being said, he's not vomiting right now, and one of the best things about the blended diet is that if all of the sudden Christian is vomiting, we can eliminate a food, we can play around with blends, add and subtract ingredients, until it works. It's amazing.

Overall, the decision to make the transition to the blended diet has been one of the best decisions for Christian we've made. He looks better, he's more alert, his digestion is better, his hair and nails grow like weeds, his skin looks better, he has less gas, and, overall, less reflux.

When we started, I wasn't sure it would work for us so I just bought a Ninja blender on sale with the thought that if we stuck with the blending, I'd head up to the big leagues and purchase the mother of all blenders...a Vitamix. The time has come. So in a few months, after the Christmas crazies and saving a little, we'll take the plunge and buy one of those suckers. The Ninja has done us well. It's karate chopped its way through most of what we have fed it. But it's time to graduate.

Blendy-blends are here to stay. Blendy-blends...write that down. Say it. It's fun!

(Reposting on the Cooking for Christian page you can find on the right sidebar with sample recipes!)

Minty lips, Santa visits, and a Birthday Girl

I put lip gloss on my son. So what?

It's called Tennessee by E.L.F. I bought it for myself because it was a nice, nude gloss and it costs all of $3 at Target. It also said it was a "Minty Lip Gloss" on the side of the tube. Fun.

Well, I used it and realized it made my lips all tingly and funny feeling. They felt all minty and cool and then later left a sweet taste. As soon as this happened, I decided Christian needed to benefit from all of this fun and minty-ness. On it went!

"Seriously, Mom?"

Not only is the gloss great for moisturizing Christian's beautiful, fluffy lips (they are always dry!), but it leaves a sensation over his lips that makes him aware that he even has lips on his face. And it leaves a sweet taste over his lips so he gets that benefit, too. When I put it on him, he moves his lips around a little. If you look closely at the picture above, you can see that his mouth is slightly closed, rather than gaping open, which is usually the norm. We like this, Christian. We want more of this, Christian. Take note.

Tennessee looks good on you, Christian.

Santa Clause is coming came to town!

Today was Christian's last day of the school year before winter break. So today he got to meet Santa! I didn't realize Santa would be coming, otherwise I would have brought some type of camera, but as soon as I found out Santa was coming to visit, I didn't want to deprive Lola of her share of Santa induced intrigue-terror so we stayed.

I'm glad we stayed. Christian opened his hand to feel Santa's furry cuffs on his coat. Lola would not move from my lap, though. She was content in admiring Santa from across the circle and permanently affixed to me.

It was really neat to see another little girl in the class brighten up when Santa came. I think she may be autistic and I've often seen her off on her own, alone. When Santa came, she smiled, looked up at him, and opened Santa's hand to give him a ring of bells. It was so cool to watch that connection happen for her with just a visit from Santa Claus. 'Tis the magic of the season, right?

We were sad we won't see Christian's crew at school but we'll be back in January ready to learn! Recently, I've been reading about big things happening for Christian's friends attending school and I have to mention that school is like a therapy all of its own. It brings out another side of these kids that otherwise might have remained dormant. I completely underestimated the value of peers and social interaction with Christian. I'm so grateful Christian gets a chance at this and I've already witnessed the blossoming that has occurred in just these first few months just from going to school.

A little about Lola:

It was little sister's second birthday today. The last two years have gone by so fast and she's becoming this little sassy, stubborn, loving, girly person. She has opinions and words. She loves and screams and dances to everything. All of these things, typical of any two year old, are things I hold extremely dear. After having a non-verbal child who is unable to express himself to the fullest extent, having a child who is doing these things on an hourly basis becomes borderline genius.

Besides abilities, watching Lola interact with Christian is genius. She has no pretenses or expectations. She just does what she knows and all she knows is how Christian is right here and right now and that's her brother. But she's gentle with him. I mean, of course, there are times when she pokes him in the eye or tries to feed him lotion or a drink of water. But she rubs his head and climbs all over his chair. She picks up his hands and helps him play. She asks where he is when he's at school. This is what she knows and it humbles and astounds me that I get the privilege of raising this little human that will go out into the world with more compassion and understanding because that is what she knows.

She was a birthday girl today.

And I have to accept she's becoming a little girl, further and further away from babyhood.

I also have to accept that in any picture taken of Lola, there will always be blurriness. It's just the law.

Happy Birthday, Baby Princess Girl!

Christmas Lights

I am absolutely fascinated by the amount of work and preparation it takes to leave this house with children in tow. That's why I think I make such a big deal when we actually make it to events and outings that we've actually chosen to embark upon.

This evening MyTeam Triumph was participating in another 5K fun run through Winterhaven. Winterhaven is a huge neighborhood (I'll call it a "village" because that sounds more festive). It's a huge village that puts on a showing of Christmas lights every year and it's been happening for years now. I don't know how long but ever since my one year as a Brownie. So that will tell you it's been at least twenty-five years. :-). *I later googled Winterhaven and discovered it was their 62nd year doing the Christmas lights festival. So I was off a tad.

Now remember that whole "if there is a race, we're going to run it" battle cry I made in the last post. Well when I said run, I meant walk. At least in this instance. We all got sick. And I mean big time sick. Like the Great Sickness of 2011 - sick. I'm probably exaggerating, slightly, but we're still trying to shake it off - all of us. Oh, except for Gabe. Who might have been the last to catch The Great Sickness. So he opted out of our Winterhaven excursion.

Speaking of opting out, because of our being sick, we opted out of the race, but instead, decided to go cheer on some of the MyTeam Triumph crew.

Go Sarah! Go Mason! - I was actually screaming this.

Going back to my fascination with going places, I'm always so fascinated that we actually get out of the house. It's so easy to choose not to go when faced with the whole getting ready of it all. But once we get passed that, out the door, and take off down the road, I'm giddy. I'm actually thinking - I can't believe we're doing this! We're actually going to Winterhaven! I'm so excited! As if we're taking a trip to the moon.

Anyway, we made it. We cheered. But then got lost on the way to the finish line, so we couldn't see the line crossing, but we took some pretty pictures of light displays on our walk through the village.

Yes, I'm going to share pictures of lights. Which are far more exciting in person, any day of the week. So even though we took over 100 pictures tonight, I'm sharing just a few of my faves.

Christian taking a gander at all the lights. Why, yes, that is a Hanukkah bear holding a dreidel in the background. The village welcomes everybody.

Mazeltoff.

There were beautiful big Christmas light displays...

...and amazingly simple displays.

"Dream Big."

And for me, Charlie Brown is pretty much synonymous with Christmas.

P.S. Christian has always reminded us of Charlie Brown.

See?

Look, it's Lola and Christian!

Ooohhh, Ahhhh!

Before we left, we stopped at The Wishing Tree.

What's a Wishing Tree, you ask? Well, anyone can write a wish down on a "link" of paper and attach it to other papers chains full of wishes.

So, of course, I did!

I made two wishes, but I'm not going to tell you what they are!

Look at all those wishes! By the end of the Christmas season, that tree will be overflowing.

 It was a great evening and I was grateful we made it out. Not only have we endured The Great Sickness, but Christian has also been having a rough time in the evening. We weren't sure we'd even be able to leave the house at that time of day. We braved it anyway and he did great! He really likes moving. If we stopped to gaze or take pictures for too long he gave us a little grunt that we'd better get it together and move along. Of course, Christmas lights on a dark night are a wonderful sensory exercise. Always looking for therapeutic value in everything!

Seriously, though, it was a good night and the kids enjoyed themselves. It was the kind of night we think to ourselves - Why don't we do this more often? We got out of the house. We took off down the street. We gazed at the lights and then watched our kids gaze at the lights. It was fascinating.

Christmas Spirit

Last weekend I really wanted to find some Christmas spirit. I looked long and hard. We (and when I say "we" I mean Manny) pulled out boxes. I stared at what was inside of them. Nope. It wasn't there.

And I know spirit isn't about things, it's about a message. It's about the birth of Jesus Christ. It's about family and loved ones. I know all this. But having some twinkly lights up and a Christmas tree strewn with decorations sure does help build that spirit. Alas, it all felt very overwhelming.

Not realizing a pretty fierce cough and cold were brewing, I chalked it up to me just being a Grinch. Then I was mad at myself for not providing my kids with happy - twinkling lights - cookies baking - Christmas memories. Not only was I having a hard time feeling Christmas spirity, but I was also mad at myself for it. Double downer.

Then it finally hit me. Sunday night, around 8:30PM. I took full advantage and hung up lights, pulled out decorations, and started proving to myself that I, in deed, had some spirit. When it hits you, you can't let that stuff go. Hello, one o'clock in the morning.

Over the past few days, through coughing and sneezing and sniffling, I've found the Christmas spirit. And I have a living room full of lights to prove it.

At this point I like to play the This Time Last Year game. This Time Last Year we were embarking on the Ketogenic Diet. I have to say that it was probably one of the hardest times of our journey, thus far. Not only did it not take flight as we'd hoped and prayed, but Christian did not respond well, physically, and he was pretty miserable for a good part of it. We were pretty much home bound. We couldn't go many places as a family, he wasn't up for it. And even if I didn't express it at the time, it was a dark time for me.

I couldn't understand why, after we had tried everything in our power, weren't we getting the answers and results we wanted. I couldn't understand why we were taking these paths that seemed so perfect it was if God had created those paths just for Christian. Maybe He did. But they seemed like dead ends.

I still don't know what purpose those paths served but I learned a lot from those paths. I learned a lot about what is in our power to do for him. I learned that, dammit, he is just bound and determined to create his own path. He is not going to be like any other child. Sounds simple enough, but we wanted him to be like other children, the success stories, the kids who's seizures were stopped completely due to the keto diet.

That dark time, This Time Last Year, was really necessary looking back. Because it brought me to a path of acceptance. Of course, we want Christian to improve and learn, but most of all we want him to be happy. That is most of all. We accept him. It's taken some time to get here, but we accept the boy God is giving us every day and we accept our life. We embrace it.

Acceptance has given us a sense of freedom. It's given us freedom to move forward as we are right here and right now. In comparison with last year, this is the greatest Christmas gift. It's the source of our Christmas spirit.

Acceptance also comes with a realization that every day is a gift. And every good day, where Christian is up for an adventure? Well, that's cause for celebration. So, if there is a parade, we're going. If there is a race, we're running. If there is a neatly wrapped gift, hand over hand, Christian and I will rip it open with reckless abandon. There is man made snow in the mall courtyard this weekend, it's time to get cold! (But only for a little bit, because we're babies like that.)

My point is that acceptance has allowed us to see each day as a greater gift than the previous. It has allowed us to recognize and appreciate any opportunity for joy because one day, it's inevitable, those opportunities will run out.

Christmas spirit is coming easier and easier. And it's all the more when Lola looks at those lights I hung from the ceiling and says, "Piiity, Mama!" (That's Lola language for "pretty"). And Christian can stare up at the ceiling, too, when he's on his back. Gabe's contribution? He was nice enough to sit and watch Elf with his ol' Mom for a little bit. But only for a little bit. And don't tell his friends.

During the Christmas spirit frenzy (also referred to as decorating), I learned we didn't have a tree topper. I searched far and wide (Walmart and Target) and didn't find one good enough that I actually wanted to spend money on. 

We were already displaying this as part of our Christmas decorations and Manny suggested we put on top of our tree.

They say words have power... 

I think it's appropriate.

Armsy

Armsy (adj.): The act of moving arms a lot. This may included, but is not limited to flailing, flapping, and reaching. And yes, I made this word up.

Christian has always been able to move his arms since even being in the PICU. Of course, early on it was reflexive or lacking any purpose, but eventually, he put two and two together and started exhibiting some purposeful reaching.

It took some time, though. And the purposeful stuff was never consistent. Especially if he was going through something - a cold, crappy medication, diet changes - he would just cease all movement.

I'm pretty stoked to report that he's been rather handsy lately. And armsy. He's not that excited about reaching while sitting and he keeps his hand movements pretty small and close to his body. He fiddles with his g-tube, he's even disconnected it a few times and he likes to toy with the buckles on his safety belt.

That's why his IPad works so well for him. It can sit right up underneath him and it doesn't take much action to make it work. The picture shown above is a xylophone app. But he seems to prefer the piano app. I think because it's a softer, more melodic sound. I know he likes the piano app better because he'll play with it for longer and vocalize. But when he plays with the xylophone app, the sounds are louder and heavier. He vocalizes his contempt in about fifteen minutes.

Back to the subject of armsyness, Christian is reaching for toys while laying on the floor on his back. And he's doing it pretty consistently. Of course, he has his preferences as to what he'd like to reach for. So if you test him, make sure it's interesting or he'll stick his nose up at you and walk away. Or the Christian equivalent - he'll do nothing.

But here, he was doing something.

"I'm gonna get that ball."

"Watch me go!"

"Are you watchin', Mom?"

"I'm too fast for the camera!"

Let's try it from another angle.

"I know it's there!"

"Maybe if I flap my arms like a bird, I'll get it!"

"Let me try again."

"Great! Now I've knocked it out of reach!"

He is our baby Blackbird, you know.

You'll notice he's not really using his vision much while reaching for the ball. That's because it's a hard skill to master while trying to reach at the same time. He knows the ball is there. He wants it. But he also knows that if he flaps his arms, he'll eventually hit it. So, he technically doesn't need to use his vision. And he won't if he doesn't have to.

Take 2:

"Mom! My hand is stuck!"

These subtitles aren't far from the truth at all. I put this toy down next to him, walked away, and then I heard him yell.

I came back to find his hand stuck inside the winding wire. But it made me laugh because it happened over and over again after each time I set his hand free.

"Maybe this time I'll get those beads."

"Mom! Stuck again!"

And then he hooks his fingers around the wires and gets really stuck. I like this toy, though, because he always responds to it.

So I've made armsy the word of the week.

Something else I'm trying to get on film...

Christian rolling from tummy all the way over to his back in one movement. It has happened, alright. He just won't do it if there is a camera in the vicinity.

I'll get it, Christian! Just you wait!