Kidney Bean

I'm attempting to blog while holding my 33 pounder on my lap, otherwise known as Christian. He's just a big ol' baby and anyone who knows him knows he's a snuggler. I really can't pass it up if we're the only two in the house up at 11:22PM. He's just too irresistible.

See what I mean when he's all jammied up???

Today we had two appointments that were necessary for Christian to begin the Keto diet. We had to get an EKG and a kidney ultrasound. The EKG is to get a read of Christian's heart. Going on a high fat diet can put strain on the heart. So we need a "before" picture just in case anything comes up later on. To administer an EKG, the nurse placed electrodes near Christian's heart and arteries. He did okay except that he whined a lot while the electrodes were on. He wasn't fond of the whole experience.

It was the same deal with the kidneys. He didn't like the goop on his abdomen, but by then it was nap time anyway and he was letting us know. The ultrasound tech looked at his kidneys and said, "So why are you guys here again?" I let her know it was a baseline picture. So she said, "Oh, because I was going to say this is a great looking kidney!" Ditto for the second one. It's not like I go around worrying about his kidneys or anything but it's always nice to hear when something looks perfect on or in my son! So yay for good kidneys! Oh yeah, he had to get an ultrasound because one of the side effects of the keto diet could be kidney stones. So, again, we had to get a "before" shot.

Other than that, Christian is plugging along. It really seems like he's emerging out of this temporary (thank God!) fog he was in. He's been moving around a lot more, grabbing things (like his g-tube!), and he's been a lot more sensitive lately. I sneezed a few hours ago and it scared him and he started whimpering like a little puppy.

Working hard...



Before and after...he doesn't like prone position (on his elbows) so he'll do anything to get out of it, even if that means actually rolling to the side. Whatever does the trick, buddy.

Grabbing his tube while eating. This is happening a little more frequently lately and we even found it completely unplugged thanks to Mr. Busy Hands.

Speaking of busy hands, we keep Christmas lights on at night around Christian's bed all year long. In the middle of the night last night, he caught the lights and pulled them so they were laying across his chest. Note to self, keep lights out of reach from now on.

Christian also likes feeling beads. So Christian's daddy decided to actually put a strand around his neck, which I've never done before. And if you think this isn't safe, usually it wouldn't be but with children that don't move much it's fine supervised. I mean I wouldn't leave it on him while he slept or anything but you get the picture. In fact, I could go on about toys that are unsafe for neuro-typical children but perfectly acceptable for special needs children. That's for another post. Anyway, Christian was actually feeling for the beads around his neck with both hands, purposefully. It was so cute!

On that note, off to snuggle with Mr. Busy Hands...

Really, I can't resist this face.



Printer Ink

"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos into order, confusion into clarity... It turns problems into gifts, failures into success, the unexpected into perfect timing, and mistakes into important events. Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow."

-–Melody Beattie

I thought that was a nice little quote to end out Thanksgiving weekend.

Oh, there was a ton of food - two Thanksgiving dinners and few days worth of left overs says it's time to pull the plug on this weekend.

A few months ago I was standing in the middle of Office Max/Depot/whatever and I was so pissed. We have a Dell computer with a Dell all in one printer that only sells Dell ink on the Dell website. Racket! It's a racket. And I was so mad marching into this officy-superstore and not finding Dell ink. Grrr.

I stood there and started laughing at how mad I was. And then I started to think about how thankful I was that something so stupid had the privilege of pissing me off. It was a normal feeling to have - impatience, annoyance - and I thought about that time shortly after Christian's accident when our living quarters was the hospital.

Yes, I thought about all this stuff in a few split seconds.

This officy-superstore is right next door to the Target where I drug myself through the front doors while still staying in the hospital and wondering if anyone saw how much pain I was in just by looking at me. I thought while walking through those doors - Can they see it on my face that I'm in hell right now? I shouldn't be buying socks. I should be at the hospital. Don't make eye contact."

Now that's serious stuff. Those are serious worries. Not the socks part. But the hospital-I have a sick kid-my eyes are permanently puffy from crying-kind of worries.

And there I stood more then a year later in the middle of trying to find some damn printer ink and getting all flustered, NOT wondering if my child would live or not. Just worried about that damn ink.

I was so thankful that printer ink was my biggest worry, my biggest gripe at that moment. And I laughed to myself. I found some refurbished ink for Dell printers. It wasn't all that much cheaper, but slightly.

It's an odd thing, but I'm thankful for unimportant, petty, gripes. I'm thankful that the biggest annoyance in my life at any given time is that my house is messy and I can't keep up, that Target.com's shipping charges suck, or that my computer is running slow. It's petty, it's grounding, and it's normal. And I'd much rather be worried about that then whether my child will make it through the night.

On a lighter note...so what's going on with the Ketogenic Diet?!?!

Good question.

Well, there was a hold up at the health care company. The type of formula Christian needs is not carried by our current HHC (Home Health Care Company). My first thought was that we'll have to change companies. But they told me they were finding a way to get it. Way to step up, HHC! I love proactivity.

With the Thanksgiving weekend, nobody was terribly pumped to get things done so I didn't fight. Not everything has to be a battle or an argument or a blog entry tirade. I can chill. Besides, we should have it by the end of this coming week. And there were a few appointments we needed to complete to get some baseline information for Christian and those don't happen until Tuesday. Mama bear is chillin' until then.

Less Asking, More Thanking

Every night I say my prayers, usually over Christian. Or one set of prayers over Christian and one set by myself when I get into bed. I say thank you really quickly so I can get to the part where I'm asking God for stuff.

I'm not asking for new purses or more money or a new house or anything like that. I ask for really important things like healing for Christian, health and safety for my family, more healing for Christian.

I have to admit I got a little tired of asking for things all the time. And then I was reading every one's facebook status and a few of my friends decided that every day in November they'd post something they're thankful for. I decided that for the month of November I'm not going to ask God for anything. I'm just going to say thank you every night. Not because I'm such a good girl or because I'm selfless or because I never say bad words or because I go to church every single Sunday. I can tell you right now with 100% certainty that none of those things apply to me at all times.

But I can tell you that I was just tired of asking and asking and it was time for me just to be thankful for a little while with no pretenses or "thank you, but's...."

And how appropriate that it be the month of Thanksgiving...one of my favorite months. So before we get down to the turkey and pumpkin pie, a few things I'm thankful for right now...

...my kids in a nutshell...

...park dates...

 ...the hammock I got in Mexico for $25!...(Score)...

...a hubby that cooks...often...

 ...funky sleeping positions and movement that gets him there...

 ...pigtails and "What's up, homie!"...

...Reid Park where there are ducks to feed and trains to ride...

(If you look closely you can see a train that Lola is riding)

...a climbing monkey...yeah, she climbed up there all by herself...supervised, of course...

 ...weather cool enough (well, sort of) to wear adorable fleece pullovers...and open hands...

 ...church clothes, tights, big girl shoes, and learning to walk, albeit bow legged, in said big girl shoes...

...lots to be thankful for and more to come!

And as for asking God for things, I've done pretty good. I mean I've asked for the Ketogenic Diet to work but that's it, I swear.

Here we go!

It was just a mere idea months ago. This idea that I would completely change my son's diet in hopes that it would help with seizure control.

It was a few months ago when I brought the idea of the Ketogenic diet up to some of our doctors. They seemed supportive at first but then when they found out I was serious, their tune changed and I was quickly discouraged from starting such a diet. Why? Because it would soon become apparent they had little experience with it and said things like "hard" and "difficult" when explaining it. Well, some of this crap is hard and difficult so nothing new there!

I was determined. I know the stories of great, miraculous success. And I know the stories of the diet failing to do much of anything. My intent was and is to find the very best seizure control I can, and the fact that the Ketogenic diet is diet centered and not medication centered is particularly appealing. I also either want this to be "it," the thing that wipes out those brain interruptions so Christian can move forward, or I want to be able to cross this off my list if it isn't "it."

And here we are.

It was my understanding we would have to have two appointments. Our first would be an evaluation with a neurologist at Phoenix Children's Hospital. Then we would make an appointment with a dietitian who would basically take over and help administer Christian's new diet. That means we would have had to make another 2 hour trip back to PCH at another date, prolonging the beginning of the diet.

We arrived at 8:30 in the morning and met with a new neurologist, actually an epileptologist, who sounded exactly like Isabella Rosellini and kind of looked like her, too. She evaluated Christian and quickly made the determination that he would be a fine candidate for the diet. She also looked through his records and mentioned that our neurologist in Tucson is doing everything she would have done. Good to know.

Because she made the determination so quickly, she called the dietitian and asked if she could see us today. She could! But in three hours! So Dr. Rosellini told us to go shopping and come back after lunch.

We returned after lunch and that's where information overload started. The Ketogenic diet is about ratios of fats and proteins to carbs. High fats and proteins, low carbs. There are calorie calculations and weighing by the tenth of a gram. There are recipes for tasting and OT. We even have to make sure our Tylenol and other over the counter medications are sugar free. Not only that, we have to make sure our lotions, soaps, and toothpastes don't have any of the forbidden ingredients.

It's not just a diet, it's a complete overhaul in the way we do some things.

The prescriptions for new formula specifically formulated for the diet will be done by Thursday or Friday. We will begin the diet in the comfort of our own home and check his urine for ketones twice daily to make sure he is in ketosis.

I'm hoping we'll be ready to start by the beginning of next week and I have the direct line to the dietitian.

Here we go!

...Aaaand Send.

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Why, hello there, head control!

We've missed you so! Glad to see you again. You know, I'd really appreciate it if you stuck around for good, maybe plant some roots and hang out for a good long while. Maybe even for good.

K thanks,
Christian's Mommy

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Hey, medical staff/assistants/professionals/people in charge of processing things...could you please please please do stuff in a timely manner? Pretty please? This whole leaving things until the very last minute is really stressful. Failing to complete what you're supposed to fax to the neurology office at Phoenix Children's when you knew about it three weeks ago and now I'm calling you just to confirm things and I find out you never faxed it because YOU NEEDED THE NAME OF THE DOCTOR BUT NEVER CALLED ME really pissed me off today!!! And if you need me to go down there, gather my son's records and fax them myself I'd be happy to oblige!!! Because when I was in the "workforce" I did that stuff for people...in a timely manner...imagine!

I understand things come up and we're not your only patient and I should have patience and all that, but I'm not really buying that mess right now. All of my patience is reserved for my children, most of it is spent on being patient waiting for the next move Christian will make, hoping it's progress and nothing seizurey. So all of my patience is out and, sorry, but it's too bad you don't get any. No patience for you!

Can we get it together, please?
Thanks,
The Pain in Your Ass

**********************************************************************************

Dear Lady I've Never Met,

Thanks for having the guts to ask the most ballsy question I've ever been asked. When you asked, "Does all of her activity make up for what he can't do?" regarding my disabled son and very abled daughter, I really didn't know what to say. But thanks for giving me something to think about and leaving me at a loss for words for second. But only a second, because this is ME we're talking about here.

No, it doesn't "make up" for what Christian's can't do. It does keep me busy enough not to think about what he can't do so I guess that helps.

I know you meant well,
Speechless and Tired Mommy

**********************************************************************************

New Dentist,

I really like you. Thank you for being so gentle with my boy for his first dentist appointment. I love appointments where I don't have to be immediately concerned about any particular thing and I don't have to contemplate surgeries or medications or bracing or whatever. Thank you for giving him a new Diego toothbrush just like all the other 2 year olds get.

See you soon!
Happy Mama Bear

The Heart of Life is Good

Pain throws your heart to the ground

Love turns the whole thing around
No, it won't all go the way, it should

But I know the heart of life is good

-The Heart of Life is Good, John Mayer

Oh, I know it's good.

Sometimes that "heart of life" is overshadowed and buried in grief and sadness and worry. And then other times it shines through all the muck and there is beauty.

I experienced some of that heart of life stuff when I received a large envelope in the mail from one of our coolest friends, Jennifer. Wouldn't you know it, she knew I really wanted this book called Just Because, by Rebecca Elliott. It's a children's book about the author's two children - her severely disabled daughter, Clemmie, and her younger son, Toby. She writes about life with Clemmie from Toby's perspective. Here's an excerpt.

"My big sister Clemmie is my best friend. She can’t walk, talk, move around much, make macaroni, pilot a plane, juggle or do algebra. I don’t know why she doesn’t do these things. Just because...Clemmie has a great chair. Last Tuesday we went to the moon on it. I don’t know why we didn’t go to Jupiter as well. Just because...Clemmie doesn’t mind it when I bang things really loudly or chase the cat or eat the crayons. Sometimes I do these things just because."

The writer's goal was to highlight the positives of having a child with disabilities. The book is beautiful and the gift Jennifer gave me last week by sending me that book was beautiful. It reminded me of how much good is in this world. It reminded me of that "heart of life" thing again. And I really hope she knows how much it meant to me.

On Rebecca Elliott's website there is an article she did for Practical Parenting (UK) where she offers tips for parents with children with special needs. Her 5th tip pretty much spoke to me and some of the worries I've been having.

"Don't let yourself worry about the future, it will take care of itself so there is no point fretting about it now. Take one day at a time and enjoy all the great things about your child."

Sound advice, Miss Elliott.

So enjoy we did! We seized the day today and visited Mt. Lemmon. It's our mountain oasis just about an hour away.

And loosely quoting the movie The Road, "If this isn't of God, then God never spoke."

We took the kids for their first mini-hike.

(Gabe wasn't there because he was visiting his Grampa. Next time, though, we already have plans for just the three of us, sans the monkeys.)

And since there's always room for sensory stuff, Christian felt his first pine cone...

...and didn't much care for it.

We found that "heart of life" thing and grabbed hold of it today. It was in the sunlight over the mountaintop, it was in the way we wrapped our babies in sweaters and blankets in the cold mountain air, and it was there when we drove down the mountain talking about the next time we'd visit or when we'd see the snow again. It surrounded us today and it was good.
 
I know it's good.

Tales of a Giant Toddler

See the picture below?

I have a giant baby. Well, I guess he's a giant toddler now. I was trying to take a picture of his new boots because it got just a tiny bit cool in the air so we decided it was time for boots!

But, alas, my child is just too big and I am just not talented enough to take a picture and hold this giant child at the same time. So no picture of the boots. But, instead, I got a picture of a child that seems half my size. Yowza! And I not-so-secretly love this picture because look how relaxed he is! No arching, no extension! It's given us some problems with head control BUT (and this is a nice "but") it allows for some very comfy snuggling time.

So guess what the giant toddler got today...a light box!

What's a light box, you ask? It's a big box that illuminates while different shapes and colors are placed on it and light shines through. This allows Christian to use his vision to see shapes and colors using contrasting light. Our wonderful vision therapist from ASDB brought this toy for us to play with for a while. 

Look, Lola helping Christian understand just how it works. Such a good little helper! 

Another great sensory toy that I've known about for a while is the space blanket! No, Christian isn't cold. This is a regular camping blanket sold at Walmart for just over $2. It's huge and it's such a great sensory tool. Christian can touch it, pull it, hear it, and see it. Every time he moves underneath it, he gets some kind of feedback and/or sensory input. I put the blanket on him to get him going and it works every time. He can't resist the space blanket!

And what do giant babies that turn into giant toddlers get to sleep in? A crib? No way! Not anymore! The giant toddler gets a big boy bed! And not just any big boy bed. No. This bed is actually specially made for Christian by his awesome daddy. He built the frame tall enough so that lifting the giant toddler wouldn't be hard on our backs. The base was welded together and painted and allows enough storage for our home hyperbarics chamber. It looks small because it's deflated, but when it's inflated it's bigger. We'll use underneath the bed to store it and roll it out for HBOT sessions (which will be starting again soon).

This giant boy is definitely a lucky boy. I've been noticing some good things lately. Christian now has very different cries. Without looking at him I know his tired cry. He has a different cry for when he's hurt, he has a whimper that sounds like a puppy, and he also whines until he's held. Then he miraculously stops crying when he's being held. Hmmmm. I think he's playing us. He seems to be able to tell us every "no" emotion in every which way. Now if we could just get him to work on the "yes"...

So the giant toddler has a big boy bed to sleep in and he's already ahead of the game tonight as he's off in dream land. During sleep he's been moving a lot, which is interesting. While he's sleeping he can roll from his back to side and back again, he stretches his arms above his head, and sometimes he's found in different positions then where I left him. Can we please do this while we're awake, Christian?

New bed to sleep in, new light box to play with, sensory stimulation from the space blanket...all the makings of a very tired and very beautiful giant toddler.

(He's still my giant baby, but don't tell him I called him that, okay?)

 Look at those big boy kissy lips!

Patience, Play Dates, and Kindness!

Boy, I'll tell ya, this patience thing is for the birds.

I promised myself that we would not do ANYTHING new until after we started the Keto diet and measured the results. This will allow us to see the all important - what's working?! - and keep doing it.

But all this time on our hands, not planning any trips, not making travel arrangements, not organizing a fundraising event, not researching the newest alternative therapy, really leaves a lot of time to think. Maybe that's the reason for all the gray lately. (P.S. Hubby wants me to change my nocturnal nails to something other than gray after the last post. :-\)

And then I find myself on the phone with the local horseback riding therapy program (hippotherapy). I just can't let it be, can I?! Seriously, though, I'm not starting Christian on anything new until we've seen what, if anything, the Keto diet can do for him.

So we sit. We wait. But we only have about a week and a half until our Phoenix appointment! I'm starting to get excited and may even call Monday to see if they've received any cancellations so we can move this baby up!

All this sitting and waiting is really more of a figurative description of my mental state because we really got out this week. In fact, I'm pretty sure play dates saved my sanity.

We first met up with our friends we met at church, including the beautiful little Giselle, who is only one week older than Christian. She had uncontrollable seizures and experienced quite the journey with medications and doctors all over the country and nothing worked. Then they found the Keto diet and it changed their life.

Giselle's mom also told me about The Charlie Foundation. If you want to know anything remotely related to the Ketogenic diet and how it works, go there!

And I would've taken pictures, I mean with it being Christian's first date and all, but Miss Giselle was sleeping the whole time and I thought it might be weird if I took a picture of this nice woman's sleeping child on our first play date. Next time for sure!

Midweek we met up with some more friends at the park. Christian seemed to enjoy being outside and listening to the kids. Lola came back with dirty hands and knees so I'd say it was a success.

Then we finished out our week with a trip to the zoo yesterday and Aunt Pamy coming to visit from Colorado.

I love getting together with other moms. It's good for the soul. These play date things, they kind of save you. I don't know if I've been locked away for too long but I find myself either saying or thinking..."Oh, my God, you're so right!" or "Exactly!" And then other moms kind of join in, moms you've never even met and everyone acts as if they've known each other forever. All because we share a common bond of not necessarily special needs, not necessarily having a child between 6 and 36 months, but just because we're all moms. We all have really funny stories, really sad stories, really annoying stories, and stories that really just make us want to have a drink (or two). And we all get kind of annoyed by the older kids on their field trips bulldozing the playground and taking everything over!

These play dates are cathartic and necessary and I do love this part about mommyhood.

One more thing...you all know how much I love and adore Ben's Bells and how special this organization is to me. Well, I'm so excited and proud to see it grow and spread to Denver thanks to some really super Momma's who want to spread the message. Read about it here!

And here!

So visit, support, and help them spread kindness...

"Be kind...because everyone is fighting their own epic battle."

Gray

I'm testing out a beautiful shade of dark gray on my fingernails. It's by Avon and it's called "Nocturnal." Gray is very in right now and I'm finding myself jumping on gray's bandwagon.

I'd like to say that my attraction for gray is in color only, but that wouldn't be truthful.

I'll just warn you right now that I don't really write about the really tough stuff. Some may think day to day things can be hard or talking to ego inflated doctors is hard or life, in general, is hard. It's nothing compared to the deep down stuff. The really tough stuff that surfaces when you're just left to your own thoughts and dreams.

You'll have to excuse me, I'm at the airport tonight.

I read a blog entry by Kelle Hampton tonight called Grays and Colors. She writes of her daughter with Downs Syndrome and life expectancy.

Life expectancy hasn't really been something I had visited when thinking of Christian's future. Not because I'm avoiding the subject, because there's no reason, at this point, to believe he wouldn't live a long life. I mean, thank God, he's healthy and has no respiratory issues, not even the slightest cold. I'm deeply thankful for this.

But recently, I don't know what set me off on this tangent thought and I'm not sure if I heard the question out loud or if I asked it to myself regarding your children outliving you. But, every parent hopes and prays they'll pass on before their children. I'm no exception.

However, when I dug a little deeper into my own psyche, and really thought about the concept of wanting to pass on before my children, I had a different answer for Christian.

The truthfulness with myself took me by surprise, but it was truth nonetheless.

I had to analyze this question knowing what I know to be true now. What is true is that Christian needs to be taken care of. He is my forever baby. The truth at this moment is that he needs a lot of assistance. Assistance to do everything.

I'm not counting out more healing in the future, but as the truth lies with us right this second, in Christian's current condition of depending on someone else to take care of him for his everyday needs, I can honestly say I'm not sure I want to pass before him.

The sole reason I feel this way is because I'm scared of what would face him if I weren't here to love him and protect him. I'm scared of the unknown. And maybe it's way premature to even think about this stuff, but it's there, floating around in my head.

Tough stuff, I know. I don't mean to get all "gray" on you. But it's the truth. After reading the Kelle Hampton's blog addressing her thoughts and sadness pondering life expectancy for her child, it hit a nerve.

By no means do I sit around thinking about my son dying. Please. After our first encounter with death, I don't really wish to revisit it...ever again. And when I picture these thoughts I picture both Christian and I old and...gray.

Halloween Happy

I really love Halloween a little bit more each year. I liked dressing up when I was little so, to me, it's like one big dress up day. My sister and I used to dress up in mostly homemade costumes, thanks to Mom. We'd get tons of candy, count it up at the end of the night, making sure to check for razor blades and to see who got the most candy. Then my mom would hide it in the freezer allowing us one piece a day. She relied on us forgetting all about the candy, eventually, so she could throw the remainder away.

Halloween is one of those holidays that makes it so much fun to be a mom. Ever since Gabe was little, I've dressed him up and taken him to the same neighborhood, with the exception of a few years, and it's now the neighborhood we live in. And our neighborhood really stepped it up this year!

There were more decorated houses, more strobe lights, more characters, more fog machines, it was so much fun!

You know what else was great about this Halloween? It was Lola and Christian's very first time trick or treating. Last year Lola was in my belly and Christian stayed home with Daddy. And Christian's first Halloween only met him at a few months old.

We started the Halloween festivities with carving pumpkins the night before. Gabe didn't join us because he went to a friend's house and as he put it, "Mom! You have tons of pictures of me carving pumpkins. I don't need to do it again." So I settled on watching I Know What You Did Last Summer and picking out Halloween candy with him before he was off to his friend's house.

But the big kids wanted to do it (i.e. Mom and Dad). And, by far the cutest pumpkins to come from our carvings were the Lola pumpkin on the left and the Christian (Frankenstein) pumpkin on the right.

I guess I love Halloween especially so because there are limitations on a lot Christian can participate in with regular children, so we grasp at what we can. Dressing him up and taking him trick or treating is something we can do. So trick or treating we did!

But first we need a pre-trick or treating pep talk from Dad.

"Okay, I think I'm ready."

Lola is ready, too.

 Another thing I LOVE about our neighborhood is that some of the houses have special treats for kids they recognize that actually live in our neighborhood. It's so sweet. We're met with a, "Happy Hallow- Oh! I know you! You get a special treat!" And from behind their backs appears a little extra something. One of the extra somethings this year was a Halloween bunny for each baby. Christian liked his and "petted" it the entire trip.

"Hold my hand, Christian!"

After we came home,  Lola got to try her first lollipop all by herself, as she insisted, without anyone holding it for her. It ain't Halloween 'til someone has a sugar rush.

So, of course, Christian had to do it, too! With Daddy's help, Christian was able to grasp the stick and taste the lollipop. And it ain't Halloween unless someone is holding a lollipop.

(Look, Miss Kim, grasping the lollipop stick all by myself!)

 Completely exhausted from the whole ordeal, Christian falls fast asleep with Mr. Halloween bunny by his side.

 It was a great Halloween with great family and great neighbors. It was a Halloween that made me happy and excited to be a mom. All of my children had some kind of fun, whether it was Gabe going trick or treating with friends all by himself for the first time, Christian holding Mr. Bunny, or Lola getting her sugar rush on. And that makes this mommy even happier.

Time to put the candy in the freezer.