See Christian and Lola's ISR video!

Wednesday, December 29, 2010

Think Basic

Another Christmas has come and gone and I'm happy to have been blessed enough to share it with three beautiful and healthy children in the comfort of my own home with my hubby, who just happens to be pretty awesome, as well.

The kids got some pretty cool toys from Santa. Lola got a purse she can unpack so she can quit unpacking mine (not working so far) and a little pink remote control car she can ride around in. Gabe got another band T-shirt and a few other things. And Christian got a new therapy ball.

Speaking of Christian, it can be really difficult to find things to get a special needs child for Christmas or really for any gift giving holiday for that matter. I even have a hard time sometimes.

But the key in finding the right gift for a special needs child is simplicity. Our minds are so hardwired to choose the biggest, best, brightest, loudest, most high tech, expensive gadget we can get our hands on. The great thing about giving a gift to a child like Christian is that it's all back to basics.

Here are a few things Christian got for Christmas...





This "football" was found at Babies R Us and it made a perfect stocking stuffer for Christian. It's great because it's bright orange and he can get his fingers in all of the different holes. The holes aren't only great for feely fingers, but they also double as placeholders for cut up pieces of space blanket.



This dude sat perched on the corner of Christian's tray is great for holding because it's the perfect size for Christian's hand and it's pokey and has some good textures to it. Besides that, every kid should have at least one toy dinosaur, I think. Gabe had a whole farm of them when he was little, but he couldn't pronounce his "r's" until he was five so he called them dinasuah's. Don't tell him I told you that.


This toy is pretty cool and both Christian and Lola got one in their stocking. I found it at Walmart in the party favor section. It's a toy with a little button that makes the lights inside the clear plastic dome change and rotate really fast. It also vibrates and Christian really follows it with his eyes. I love this toy because:
1) It's multisensory.
2) It costs $3.50.
Mama loves a good deal on sensory toys!



Look how simple this is!!! It's a garland and it's got all the makings of a good sensory toy. It's bright, it's colorful, and it can be unwound and strewn amongst all of Christian's other toys, entwined in his seat, over his shoulders, there's so much you could do with this! And who says you have to put it away because Christmas is over? This baby is staying out all year round.
(Thanks, Nana!)

When my mom asked what she should get Christian, I opted out of suggesting another Playskool toy from Target because they are just not practical right now. I asked her to be creative, and because she's got creativity in every cell in her body, she came up with this beauty. Get this...it's a cooling and/or warming bean bag. It's designed like a strip of weighted blanket and filled with rice. So it can be warmed or cooled. And it's long so it can wrap around his neck, lay across his chest, or wrapped around an arm or a leg. It also has colorful ribbon hanging from it, just to make it that much more sensory driven. And she made the whole thing herself! (Thanks, again, Nana!)

 
It's also a Christmas tradition to put an orange or a tangerine in the bottom of the stocking so this is what Christian thought of smelling his orange.
Before... (happily opening his stocking with Daddy)

After....

Daddy: "Here, smell your orange, Christian."
Christian: "Gross, Dad! Get it away!"

Having a child like Christian forces one to be creative. If you're wondering what to get your special needs child or what to get for a special needs child you know and you're stumped, think simple. Think basic.

Think basic? In closing out this year and diving into another, getting back to basics and simplifying things sounds pretty good right about now.

If I don't have a chance to jump back on before the actual New Year...have a safe, happy, promising, and hopeful New Year!
Sunday, December 26, 2010

Hello World

For Christmas Gabe got me the new Lady Antebellum CD and it has my current favorite song on it, Hello World.

I listened to the song about 25 times this morning and then decided to look up the video.

I'm not going to pull it apart or analyze it or explain why I love the song so much because it really explains itself.

But the video literally took all the breath out of me.

I won't even get into why or how or what it all means because I'll ruin it. So see for yourself.





P.S. I really love this song right now, did I mention that?
Thursday, December 23, 2010

Christmas Spirit

I've been trying really hard to get my Christmas on so as not to fall into any Grinchiness that might be lurking about.

With things being a little more...ahem...challenging around here I've really tried hard to force myself into the Christmas spirit.

I tried to make a gumdrop garland from real gumdrops, but it was too heavy and too sticky. 10 gumdrops in and I was done.

So I opted for stringing popcorn with a few random gumdrops. It was going well until it got tangled, I threw a little temper tantrum at the said tangled string and let's just say popcorn was falling down around us like snow. It was funny and had Gabe laughing and that's no small feat.

I also tried my hand at sugar cookies, but they came out crunchier then I'd have liked. I still ate about 15 of them yesterday. I didn't feel full of Christmas spirit. I just felt full of cookies.

As we got closer to Christmas and all the presents are wrapped and decorations are up, and cookie coma had subsided I felt a little more in the spirit. So we embarked on an adventure...to the local mall.



Looks like I found my Christmas spirit.

This picture means more to me then you know but I'll try to articulate it. This picture is a first for both my Christian and my Lola. This is Christian's first picture with Santa since his accident and this is Lola's first picture with Santa Claus ever.

I was really nervous about this. Every week I told myself, I'm going to go the mall really early when nobody is there yet that way we can take our time to set Christian up and make sure Santa could hold him properly. I was really nervous because I had these images of a Santa with a bad fake beard confused as to how to hold Christian and ruining the whole thing or maybe even saying he couldn't do it. Wouldn't that be awful?

So when it was our turn, I walked up to Santa with Christian in my arms and told him Christian had special needs and couldn't sit up. Santa looked a little on the frail side so I really wanted to give him a heads up. I asked him if he was comfortable holding him. I mean not only is Christian not able to hold his own weight, he's got a lot of weight to hold period!

But Santa Claus is a special man and can do pretty much anything. If he can squeeze his big belly down a chimney to deliver presents to boys and girls around the world, then surely he can hold my little boy. He assured me he could do it and Mrs. Claus reminded him to support Christian's head.

My heart thumpety-thumps and sings a little song and does a little dance when I look at this picture. I'm pretty sure that's my Christmas spirit talking.

Sometimes it gets lost in the frustration of everyday occurrences but we truly have so much to be thankful for.

And just for comparison's sake...

Left: Christian's first Christmas 2008 (4 months old)            Right: Christian and Lola's "first" Christmas picture. 2010


May you and yours have a wonderfully blessed Christmas! 



Charlie Brown: I guess you were right, Linus. I shouldn't have picked this little tree. Everything I do turns into a disaster. I guess I really don't know what Christmas is all about.

[shouting in desperation]

Charlie Brown: Isn't there anyone who knows what Christmas is all about?

Linus Van Pelt: Sure, Charlie Brown, I can tell you what Christmas is all about.

[moves toward the center of the stage]

Linus Van Pelt: Lights, please.

[a spotlight shines on Linus]

Linus Van Pelt: "And there were in the same country shepherds abiding in the field, keeping watch over their flock by night. And lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid. And the angel said unto them, 'Fear not: for behold, I bring unto you good tidings of great joy, which shall be to all people. For unto you is born this day in the City of David a Savior, which is Christ the Lord. And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger.' And suddenly there was with the angel a multitude of the heavenly host, praising God, and saying, 'Glory to God in the highest, and on earth peace, good will toward men.'"

[Linus picks up his blanket and walks back towards Charlie Brown]

Linus Van Pelt: That's what Christmas is all about, Charlie Brown.
Monday, December 20, 2010

Whip Cream and Gravy, Baby

I like gravy. I also kind of like the whip cream on top of my yummy coffee drinks. But usually I forgo the whip cream on my Starbucks Frappuccinos. Maybe I should rethink this.

It's been two weeks (yes, two weeks already) since the start of the Keto diet.

And what an emotional roller coaster it has been.

Mostly because I was warned of the sleepiness and of the possibility of Christian being lethargic, which honestly isn't much of a leap from how he is usually, so I was prepared.

What I wasn't prepared for was an increase in seizures. When you have a lot of eggs in one basket, as one friend put it, it's such an emotional blow to see the opposite happen of what you so hoped and planned for.

As I mentioned in the last blog, I've found out that increased seizures actually wasn't that uncommon. And I finally emailed the dietitian. She reiterated that it's ONLY BEEN TWO WEEKS and it's not enough time to even make adjustments to the diet. She also mentioned that she had a patient that took six months to get optimal seizure control. This is also something I've read can happen, too.

Long story short...BE PATIENT, SHAUNA!!!

I mean, in my defense, it is so hard to see more seizures, which is exactly the opposite of what we planned for. Over the last two weeks there have been a few talks with God, second guessing, researching, more second guessing, and praying and praying and praying. I finally reached my breaking point when I heard a little voice in my head. I think it's God, but maybe it's one of my multiple personalities. If so, this personality is the smart one.

I was very upset and emotional when I heard this voice say - Accept what is and be thankful for anything given on top of that.

What does this mean? It means accept what I prayed for in the beginning and that was to have Christian with us, no matter what his limitations. This is what I begged for. So accept the present and be thankful for the gravy, the whip cream, and cherry on top.

We have what is good in front of us. Everyone likes mashed potatoes, right? Well, the gravy on top is what makes it extra delicious.

Everyone likes Starbucks, for the most part (and if you don't, I'm very sorry for you). And it's the whip cream on top that makes it that much more decadent.

This is my analogy of the week...Christian is my mashed potatoes. Whatever is given to us in the form of abilities is just gravy, baby.

Why am I comparing my son to mashed potatoes and Starbucks drinks, other than the fact that he is so warm and mushy and sweet I could just eat him up? Because as soon as that little voice put things into perspective for me, my week or so long downer mood flipped a 180. It was as if someone turned on a light switch and it was all better. I could see clearly again.

And I'm sure you're thinking, "Okay, Shauna, that's nice and cute with your food analogies but how's Christian?"

Well, yesterday I think a little light switch of his own turned on. I think he actively looked at the Christmas lights for the first time this season. He's moving a little more but let's go back to the looking. He was actually looking. I would talk to him on one side and his eyes would move to where I was.  It worked on the other side. This is after a few weeks of very little active looking and a lot of his head stuck to the left. He followed his silver space blanket right away and I couldn't have been more pleased with my whip cream.


And this space blanket thing is so awesome and so big, you can prop it and make cool space forts out of it! This was pretty much ideal because it closed out most of the light, which is easier on Christian's eyes and he stared, wide eyes, at his favorite sensory toy. If you're a special needs parent, go buy one NOW! About $3 in the camping section at Walmart. Tell your friends.

I'm hoping, praying, hoping, praying, this light switch I think I saw is the beginning of something. That would seriously be just gravy, baby.
Wednesday, December 15, 2010

Funky Leg

There are weeks that are full of new things and fun and miracles and light and beauty and the good things.

And I guess you could probably gather that every week, and every day for that matter, has the same positive elements somewhere if you look hard enough.

Let's just say that this week I'm having to look really, really, hard.

Translated, this means I've had a craptastic week.

On Monday Christian was officially through the first week of his diet. The mixing and measuring isn't that difficult, to tell you the truth. Every time I get the slightest bit irritated by my confusion over numbers and percentages I think about the parents who have to weigh actual food out and try to ratio carbohydrate to proteins to fats through actual food. And those who have to physically deny their able bodied children cookies, candy, and the sweetest things in life...oh, now that's painful. So for this particular diet, I have to say I'm thankful for Christian being fed through his g-tube. It's pretty easy. Guess I didn't have to look too hard for that one, eh.

The first week was emotionally very difficult. Christian did what was expected, sleep. But I felt like I saw more jerks. At first I thought it was because I'm supposed to be tracking exactly how many jerks he's having a day so we can measure progress. It's gotten to be so much I'm ready to write "A LOT" over the whole week and chuck the damn thing.

I wasn't aware at all that seizures could possibly increase. So thank God for the internet. I was able to jump on and find a couple Keto diet forums, message boards, and a list serve much like my near drown list serve.

Why is it that talking to other parents in the same situation feels like unlocking a secret society? I always feel this odd mixture of clarity, understanding, and anger that doctors and professionals don't share the information upfront. But mostly I just feel hope.

Anyway, those parents gave me some great ideas of which include lowering the ratio, reducing the seizure medication he is on and just holding out. Many parents shared that it took a lot of tweaking and a lot of patience to wait for the diet to finally work. And this can take months. They explained the body has to adjust to the new make up of energy and it could take some time. Mostly, I just need to have a little more patience.

Stupid patience. Why do you always have to be so necessary?!

What else could be making things a little difficult? Well, Christian is hurt.

This is the same hurt he got last year. It was the first crunch I heard in his leg, same leg, same area around the knee. But there was nothing on the x-ray for that area of the leg.

Fast forward to Europeds, same knee area on the right side gets tweaked. X-rays show nothing, Christian is better in a few days.

Fast forward to two weeks ago, Christian was in a kneeling position on the ball, face down, and unexpectedly rolled and twisted to his side during PT. This tweaked his right knee again and he cried and cried and was better in a few days.

Fast forward to last Saturday. I was sitting with Christian on the couch. I lift up his foot to look at it, not even applying any force, and he buckles his knee and I hear the infamous crunch. Oh, it's ugly. He cried crocodile tears. I was on my way out the door to urgent care when I put him in his chair and he stopped crying. So I decided to wait and get an appointment for that week with our ortho doctor.

His leg is still pretty sore but he can tolerate some stretching. I took him to the ortho doctor this morning and x-rays show something strange going on. Definitely not normal but not definite either. It's not a clean crack or break. The x-ray shows fluid around the knee area signaling trauma of some sort. There is a circular cloudiness above his knee. He said it's either some kind of break, infection, or a tumor. The tumor being highly unlikely. Infection not as likely either because Christian hasn't has any kind of fever or signs of an infection.

The plan of action is to go back in two weeks to see what develops and if we can find out more about what's going on through another set of x-rays. If we still can't really see what's up, we'll do an MRI. Fun stuff.

It's hard because I just can't help but think there is more I could be doing for him to avoid this. But what? I'm a little tired of guessing.  So I need prayers that the answers will come.

And just to top this super positive blog entry off, I'm sick. I have my yearly cold. I get one once a year and it's made it's appearance today. It's been totally awesome. :-\

As I'm finishing up this entry I'm realizing that, actually, I didn't have to look too far to find the positive. Thank you, Blogger.

Positives found:
- Support forums and message board are awesome, life and sanity saving, even.
- I'm so glad Christian is g-tube fed after choosing to partake in the Keto diet. It makes life just a little easier.
- I love our Ortho doctor. He isn't pushy. He isn't knife happy. He communicates and I wish he was our doctor for everything.
- My husband made dinner so I could sleep off some of this nastiness.
- I finally wrote Christian's name in gold glitter on his stocking he has had for the last two Christmas's so everyone would know it was his. Boy, I'm glad there is a little boy around with a funky leg that belongs to that stocking.
Sunday, December 12, 2010

Crafty

I've been feeling crafty lately.

I lost my crafty feelings for a while and with good reason. With Christian's accident and then having a new baby and a family to take care of, moving, and settling and traveling and therapy...it doesn't really leave a lot of room for crafty stuff.

Christmas time is the perfect time to get my craft on. And I've had a lot of creative outlets available lately. One of them being Lola's first birthday!

Another source of craftiness was born from this...


Okay so this is a sensory board. This homemade sensory board was given to us while we were in the hospital by Cici's Mom, Jenny. Let me just say, this board DID NOT look like this when we received it. It was nice and new and pretty. It had other things on it...and as you can see those things are no longer there. Why? Because of Christian. This is where it gets good...

When Christian first got this sensory board, he didn't do anything with it accept for maybe involuntary staring. Slowly but surely he started opening his hands to feel the fuzzy balls when I placed his hands over them. Then he started fiddling with the beads and noisy paper. Then he had bits of goobery gel cling octopus under his nails. And now? Well, as you can see, the board has been used lovingly by Christian's busy hands. Notice the finger prints?

So this board isn't just a sensory board. This board is a testament to progress. And that makes me a happy and grateful recipient of this board.

And, as such, with the outpouring of love and support we've received on this journey, I've had a serious urge to pay it forward. I couldn't wait to make a similar board for another child who could benefit from it.

That's just what I did...


It's Christmas themed, yes, but Christmas brings good things so I'm hoping this sensory board will bring Owen good things. It has a slinky, a large, silver bell, beads, fuzzy balls and the infamous gel clings.

Our friends also spoiled Christian with some more LED lights. And this time they're in a candy cane rope pattern and they're super bright.

Ooooh, pretty!


More craftyness? Well, I had to be crafty in this instance. I saw a really cool toy in the special needs catalog that had a bunch of beads hanging from an arch. Christian loves beads and I thought to myself what a great tool that would be for vision and and touch. Then I started thinking about how many strands of beads we have in our house. So I strung them up on an arch we already have and Manny affixed it to Christian's tray. Voila! We have the exact same toy without spending a bunch of money!


Pretty swell and it would have been better had Christian not been ready to crash. Ah, well.  


Can you see the shot glass? Well, we got a strand of beads with a shot glass attached. Classy, huh. Beads are beads, people. We have to use what we have, right?

Thursday, December 9, 2010

Ketones and Milestones

Christian has been doing a lot of this lately...




We officially started the Ketogenic diet on Monday, December 6th at 100% strength.

When weaning him off his elemental formula I felt like I was weaning him from breastfeeding or from bottle to sippy cup. Even though we don't have "normal" milestones like those, we still have moments when we realize our babies are growing up.

Take, for example, Christian's purple Passy Muir Valve. Yes, I still have it. I keep it because it's part of his babyhood and when I see it, it's like finding an old pacifier or baby sock. I get nostalgic. Weird, huh? So I keep it in it's little purple case along with the cap that helped him learn to breath strong.

So weaning him off his elemental formula to a new formula made me feel like he was growing up and on to new things. Milestones.

And, like I said, there's been a lot of sleeping going on around here. That was to be expected, though. A few weeks of lethargy and sleepiness is normal and Christian is doing exactly that...sleeping. But it's not excessive, which is when we should be worried. He wakes and plays with his tangle toys and still bats at his space blanket. We haven't seen any differences in his seizures yet. It sucks to have to keep track of them and mark them down. I'm hoping soon I won't be writing anything down but "zero."

Regarding Ketosis, we test for ketones through urine twice daily, once at night and once in the morning. He had a large amount of ketones fairly quickly and we test using test sticks. I put cotton balls in his diaper and wait. When he pees, I use an inverted plastic baggy to grab the cotton balls, I turn the baggy right side in with the soaked cotton balls inside, squeeze from the outside, and dip the ketone strip for 15 seconds.

Before urine dip:

After urine dip, resulting in large ketones:
(We want large ketones!)


As you can see on the bottle, there is a color chart that tells us Christian is in ketosis.

Other than a lot of hanging around at home, we've been gearing up for little sister's birthday this weekend and Christmas is right around the corner! I've barely done any Christmas shopping. Don't tell Christian, but I have a call into Santa to bring him a big, new therapy ball. He's grown out of his other one - another "baby" item gone by the wayside. Sniff, sniff.


 

While catching Christian in mid yawn, I wanted to show off the Christmas tree in the background. I'm not used to half a tree but, honestly, it would be another full time job keeping Lola away from that tree. She is like a moth to a flame so we had to get a smaller tree, cut it even more, and put it up out of reach so Miss Lola can't get any of the ornaments, or the tree needles, or the water underneath, or...you get the picture. And I haven't decided on a tree topper yet, so for now, there isn't one. I did find gumdrops, though, and I've always wanted to string gumdrops around a tree so there's my next project!

Off to dream about gumdrops and ketones...
Sunday, December 5, 2010

Keto-fied

Getting Keto-fied!

It's not as easy as one might think. Although, I'm not sure anyone who knows anything about the Ketogenic diet (from now on I'll be referring to as the Keto diet because it's just shorter to say and type out) would associate it with easy.

I'm getting more and more familiar with the "naughty" list. This is the list of ingredients that appear in lotions, soaps, ointments, and toothpastes that are no-no's for the keto diet.

Oh yeah, if I hadn't mentioned, the shipment came! The keto formula (Keto-Cal liquid, 4:1 ratio) arrived on Friday. I had never been so excited to see a health care shipment. When the delivery guy asked if he could bring in the boxes for me, I excitedly obliged. I was close to being ecstatic. He probably thought I was a little hopped up on candy canes but whatever. This is so different from our usual shipment. In fact, I'm fine not even answering the door and having the guy leave everything outside with past shipments. The formula is heavy, I have to put stuff away, boxes have to be disposed of, it's a pain. But this time...this time I was ready! I even wished the delivery guy a Merry Christmas and gave him a candy cane. Just kidding. But I did wish him a Merry Christmas.

All this excitement and you'd think Christian would start right away. Not quite.

He has to be eased into his new food. He's been on an elemental formula for a while now, over a year, in fact. So he can't just switch over night unless we are ready for bad reactions. So we have to transition Christian with a schedule that goes like this:

Day 1: 25% Old Formula/75% Keto-cal
Day 2: 50% Old Formula/50% Keto-cal
Day 3: 75% Old Formula/25% Keto-cal
Day 4: 100% Keto-cal

That's actually a pretty quick transition in the tube fed diet world.

And it's a lot of math and a lot of calculations with calories and high concentrations and extra water and...oh, it's all fascinating stuff.

Point being...drum roll please....tomorrow is day 4. 100% baby.

Some of the initial side effects of going on the diet are sleepiness and lethargy for the first few weeks as the brain begins to learn to pull energy from fat instead of carbs and sugar. There may also be some throwing up. We prepared for this by increasing his acid reflux medication. We haven't had any issues so far so we'll see when he goes full throttle.

We also have to test his urine for Ketones using Ketone strips. That's a little difficult. We just put cotton balls in his diaper but we have to be sure to get the soaked cotton balls before the absorbency chemicals from the diaper take everything. I just gave up until he's on Keto-cal 100%. No use because his ketones were negative, negative, negative.

So exciting stuff around here. Actually, besides my encounter with the delivery guy, it's been pretty calm. We stayed home pretty much all weekend, which is a good thing because we have some busy weekends in our near future including little sister's very first birthday party next weekend!

Now in thinking about everything I started getting ahead of myself and remember how much I loved November and my promise not to ask for things. It really took a lot of pressure off expectation. I was just thankful. No reason I have to stop just because it's December, right? So I'm going to continue being thankful because it makes me a lot more appreciative and helps me focus.

That being said, I'm thankful for the opportunity to try this diet for Christian and that we've been able to work with very capable and experienced doctors in order to administer this whole thing. I'm also thankful this ALL can be done from the comfort of our own home. Christian is appreciative of that, I'm sure of it.

As a side note, I'm also thankful for the local radio station that plays 24 hour Christmas music and if you haven't seen my facebook status, I'm very thankful for the Starbucks Caramel Brulee Frappuccino. Pretty sure if I was on the Keto diet, it would be on the naughty list.
Thursday, December 2, 2010

Thank You, Sara.

Bronson Staker was a little boy much like Christian was.

He was blond. He was a cutie. And he drowned. Fully coded, no pulse for forty minutes.

This was about ten months ago.

There fates were a little different, though. They were both brought back from death and they both lived, however they face very different futures.

Bronson came out of it pretty much unscathed. He had no brain damage initially, or so far, for that matter. He woke up, started making eye contact, eating, walking, and walked himself right out of that hospital.

At the time it kind of shook up my little community of special needs moms, especially those of whom had children who suffered some kind of accident that changed their little ones forever. It certainly shook me.

I was following Sara Staker's (Bronson's mother) blog from the time of the accident. I saw pictures of her little boy in critical condition, with tubes down his throat, a cooling blanket on his body, looking just like my Christian. And then almost over night, tubes were gone and there was a picture of a little blond boy smiling away, ready to take on the world.

Of course, I was shaken. Of course I thought why not Christian? Of course I was confused and sad and hurt and angry. Why not Christian? Then after a few days I forced myself to continue following his story. Something kept pushing me to rip that band aid off and continue rooting for this boy. It was a testament to a truly divine miracle in the making. No, it wasn't the cooling blanket. No, it wasn't that he was under the water for a shorter amount of time. It was a MIRACLE. And it remains a miracle as to why this boy seemingly suffered no damage. A testament, as it were, to the power of God and the mountains He can move.

So why not Christian? Beats me. It's really not up to me to figure it out, I guess.

And why am I drudging this up ten months later? Well, I saw Sara on the news this morning with little Bronson. Was I sad or hurt or angry? No. I was moved.

I was moved by her words and acknowledgement of all of us mothers out there who experienced similar tragedies and different outcomes. She whole heartedly acknowledged us. I felt like her words acknowledged Christian and it moves me that she is so painfully aware of what could have been Bronson's fate. Ten months later she very well could have ridden off into the sunset with her brood of healthy boys never looking back, never acknowledging anything but how lucky they were or how close a call it was. It moves me that she remembered us.

Ten months later I feel differently. When I saw her on TV with her rambunctious, energetic two year old, I no longer questioned why not Christian? Instead I thought about our entwining paths in this world and how each of us has a journey and a purpose that we may not yet be privy to.

Now you all know I'm a Christian and that means I'm a believer. I believe with all my heart that God intervened and used Bronson as a tool of how miraculous His healing is. I also believe with all my heart that God did the same with Christian and his friends. It just looks different. How fitting that this message is delivered to me this morning on the doorstep of the Christmas season.

If you're not a Christian or not religious that's okay. We all have our path to our Creator and this experience just happens to be ours.

And, Sara...thank you for remembering us.
Tuesday, November 30, 2010

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.

Monday, November 29, 2010

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.



Monday, November 22, 2010

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.
Wednesday, November 17, 2010

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!
Monday, November 15, 2010

...Aaaand Send.

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

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

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
Sunday, November 14, 2010

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.
Thursday, November 11, 2010

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!

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