See Christian and Lola's ISR video!

Thursday, June 30, 2011

Do you see what I see?

Do you see what I see?

Is that what I think it is??

Well, he's either terrified or smiling.

I'm going to go ahead and put it out there...

I think this might be our first attempts to smile.
Wednesday, June 29, 2011


When I hear the word dream I have mixed feelings.

I read a memoir about following your dreams. It's not a book I would have normally chosen but it was all over Oprah - The Last Lecture.

As I'm reading it, the author is going on and on about following one's dreams. In my opinion, it was rather trite and...meh. Follow your dreams, and they'll come true. Dream big.

What if your dreams are for your children? And what if those dreams are so big they engulf you? And without an act of God, those dreams may just be too big for this small, mortal earth.

So I was a wee bit cynical of the book. Mostly just not entertained, though.

The subject of dreaming is a sore spot for me. After Christian's accident, I would have dreams of him smiling and laughing and I would wake up sad and tearful. I was terrified that God was showing me these images through dreams because it was the only way I could see my Christian like that again. So those dreams made me terribly sad and a little angry. Other people would excitedly tell me they dreamed about Christian talking and laughing and I would listen to their description. They were so happy, thinking they were delivering good news to me. But it was actually really painful because, again, I thought God was showing them Christian in that way because it would be the only way they could see him like that, too.

I didn't want to hear about their dreams anymore.

Fast forward to now, I cling to those dreams. I hope and pray for those dreams. If it is the only way I can see him laughing and smiling, I can't wait for those dreams. And I wake up happy. And I'm happy when I hear that others have dreamed about him. I'm happy they got that gift, too.

And speaking of night time antics, Christian must have some pretty great dreams himself, I'd imagine. He moves in his sleep. He stretches his arms up and over his head and he makes stretching faces like he's He arches his butt up in the air and gets his knees almost underneath him. He turns his head from side to side. It's the cutest thing to watch. He's even started to really move. Yesterday morning I found him partially rolled from his tummy to his side.

I've asked a developmental specialist about it - about why he moves so normally while sleeping. She said it's an area of the brain undamaged or not as damaged that only reveals itself while in a sleeping state. How cool it would be if we could tap into that.

In the mean time, I'm glad Christian gets a chance to be free, be comfortable, and move normally, even if he is asleep while doing it. I'd imagine he's got some great dreams of running and playing, chasing our dog, Ruby, and teasing Lola. Maybe that's why he's always stretching while he's asleep. He's worn out from all of the dream fun he's having.
Thursday, June 23, 2011

Feeding Him

I will readily admit that tube feeding is one of the subjects I know the least about.

When we left the hospital after Christian first had his feeding tube placed, we were just struggling to keep food in him. Nobody ever sat me down and instructed me on how exactly a feeding pump worked. They just sent us home and let us fly. I didn't even know what a bolus was or how to do it. I didn't know (and still kind of don't) about gravity feeds and I have no idea what three quarters of the functions on the feeding pump do. Up until recently, I didn't even know what the measurements on his Mic-key button meant.

What I do know is that as soon as formula was introduced in large quantities to my previously exclusively breastfed child, he threw up. And he threw up a lot. We had issues right away. In fact, Christian threw up every day, sometimes multiple times a day, for about eleven straight months. Over the last almost two years, we've fiddled and fumbled with rates and volumes until he wasn't throwing up as much. We also discovered Renitadine, an acid reflux medication that made a huge difference and pretty much stopped the vomiting right away for the most part. We still had spit ups but nothing near the projectile - four extra changes of clothes a day - kind of stuff.

I think it's fair to say that I've been half way winging it the entire time and any advise given on the subject I cling to, but, honestly, it's like someone speaking foreign language to me. I've been briefly instructed in it, I know it's important, but I vaguely understand it.

I had heard the phrase "blended diet" thrown around a couple times. And it really scared me. It sounded out of the question, unreachable, just too much to add to load.

But I always wondered - What would I feed him if he was just a normal three year old? Why can't I feed him that?

After our keto experience, the mixing, measuring, and weighing, I started thinking more about my son's diet. And again - why couldn't I just feed him what I was feeding Lola? Only blended and through a tube?

So I really wanted to make plans to start adding whole foods to Christian's diet after we were comfortably weaned off keto.

And you know things can never get complacent or boring around here, right?

I made the first blend and it was...dare I say...exciting? Yes! It's been exciting! And I thought it was going to be more difficult and more time consuming and it's turned out to be the opposite. It's actually fun to put meals together - I've added cheerios, mac and cheese...things I would feed him anyway.

Now just to throw another wrench into things, right before we tried blended food, Christian started throwing up again for no apparent reason. Couldn't figure it out. And, frankly, I was tired of figuring things out. So I gave him real food in a blender to see if he would hold it down because everything was coming up. And you know what - he did.

We've been taking it slow and we're still in transition but I really hope it works out. I feel more like I'm feeding my three year old rather than plugging him into his pump and walking away. I can't explain the feeling of finding a way to be his mommy that feels more natural and instinctive.

So far, I'm not-so-secretly loving this.

And I'm loving this...
 ...and this...

 ...and this...
 ...and this...
...and this...
 And this one, too!

Tuesday, June 14, 2011

Christian is here.

There are some days when Christian is with us. He's present and aware and it feels like he's taking in the life around him.

And then there are some days when he's off in his own world. 

Christian showed up today.

(In case you're wondering, this is how we've rigged the tumble form straps. So much better!)

And he hung out with me in the kitchen.

And then he got distracted by the light streaming through the vertical blinds.

We had our neurosurgical consult today for Christian's VNS placement. You know how I said I wasn't scared of the VNS? Well, I changed my mind. After Christian's recent improvements being back on this regular-ish diet, I didn't want to go back. A surgery surely means pain, right? And we just got out from under a cloud of yuckiness and I'm not at all eager to go back.

In the past I've made the mistake of jumping into something new when Christian was doing well in the hopes that he would do even better with -fill in the blank-.

But knowing what I know now, I don't want to give up these good days and I'm hoarding them. So I started wanting to push back the surgery so we could enjoy the Christian who decided to show up a little more lately.

Luckily, the surgery couldn't be scheduled until late July. I asked if we could push it into late August instead. We have some birthday plans for Christian's big Numero 3 on the weekend of August 1st and I don't want him to feel like crap for his birthday.

And then school starts and I thought it would be better to start and go to school for a few weeks and get to know the classroom and teachers and then do the surgery. That way his teachers will get to know Christian before surgery and after and we don't have to postpone the start of school all together.

So it's settled. Christian will be getting his VNS implant in late August.

In the mean time, we're happy to have him join us.
Sunday, June 12, 2011

Pineapples Are So Delicious!

Since we're getting back to eating yummy stuff, I wanted to share some fun we had with a pineapple wedge.

Now, I warn you, this video is a little over three whole minutes long. This is three long minutes of a child trying to learn how to put a pineapple into his mouth. I realize that to some this might be small potatoes. This might be downright boring. But to me, it's genius!
(Apologies in advance for my obnoxious narration and insistence that "pineapple is so delicious.")

So who really lives in a pineapple under the sea?

Three Reasons Why This Is Cool:

1. Christian is really into the whole exercise. He's really trying to figure out how to get the pineapple into his mouth. It takes a lot of work and coordination for his hand to reach his mouth but the interest is there.

2. With a little elbow support, Christian can show just how interested he is in moving that arm in a functional way. 

3. How cool is it that Christian has such an excited OT? Can you hear her in the background? She's just as excited as I am and she's a big cheerleader for Christian. We are lucky to have her!

Thursday, June 9, 2011

Salted Caramel Gelato

I've been keeping something from you.

It's mainly because I was a little tired of complaining about the last six months. I was tired of the plans, the talking, the hemming and hawing. I wanted the "doing." I mean those who are close and in our day to day shuffle know so it's not like a secret or anything.

As of last weekend, Christian is no longer on the ketogenic diet. Over the last four weeks, we've slowly weaned back on to regular formula. Hopefully, soon, we'll be able to add some actual real live food to his diet. But now, baby steps.

The last six months have been very hard on Christian. The diet got off to a rocky start. It got better and then it got bad. Then better, then worse again. Christian had two upper respiratory infections where previously he had nothing but a sniffle. Christian lost three pounds, his coloring started to look off, and he was miserable. It became so that he was having more bad days than good. It became so that a good day was the exception not the rule.

That's never good.

He didn't move as much. He got really tight and couldn't relax. I went through every mental checklist I had and couldn't figure out what could be causing Christian so much discomfort.

One warm day a few months ago we were sitting outside of a gelato shop and all of us were getting down on our little cup of gelato, which was extra good because it was warm outside. Christian sat staring at us. I just had an inclination to give him some. The mini shovels used to scoop the gelato were perfect for tasting. So I gave him some. And his little mouth started fluttering. He also thought it was a good idea to get gelato that day.

That got us to thinking about this diet and what it was really doing for him. After all, salted caramel gelato isn't exactly keto friendly. Then I thought about his tasting and eating and how well he was doing with it before we had to take all the good stuff away. And then my stream of consciousness let me to thinking about Christian's experiences in life - what he'll be able to partake in. And I thought if he has limited abilities in life, is the ability to taste salted caramel gelato something I want him to miss out on?

This all seems really shallow, I know, especially considering that the keto diet is about seizure control. And seizure control trumps salted caramel gelato.It's a damn shame, but it does. But what if we weren't exactly getting seizure control?

It really wasn't about salted caramel gelato.

The whole point of the diet was to get some control over Christian's seizures. After Christian just seemed to be getting more and more unhappy, I started giving the diet serious thought. We messed around with ratios, we added special oil, we took it away, we did all we could to get some kind of change early on. And then recently, he wasn't moving as much, voluntarily or involuntarily. You don't appreciate involuntarily movement more than when there is no movement at all. He was tight, crooked, in pain.

I started that whole thinking thing again. I thought about whether things were better now with Christian than before we started the diet. And I couldn't remember. And if I couldn't remember, then it wasn't a significant enough change to keep him on such an unhealthy diet.

Don't get me wrong, the keto diet works wonders for some kids. And I believe in the beginning it had some affect on him. I'm so glad we tried it! If we hadn't, I'd have kicked myself and always wondered if we missed the boat. Now I know. We got on that boat and now it's time to get off. I knew it was an unhealthy diet going in. To tell you the truth, if wheat germ and coffee beans made my son's quality of life better, that's what he would get all day, every day! But it's just not the case, and it's not the case with the keto diet. It's costs versus benefits. And the costs were no longer worth it.

I can't say that I'm sad. I'm a little disappointed after all that build up and change over we didn't have better results. But I'm not sad about saying goodbye to that little scale, weighing, measuring, and mixing. And I'm not sad about saying goodbye to Christian's discomfort, constipation, irritability, weight loss, abdominal pain, and weakened immune system. And you know in this house, if something ain't workin' for Christian, we drop it like it's a bad habit. So the decision was made and we move forward.

The good news is that ever since transitioning Christian back to regular formula and bumping up his calories, he has started moving those arms again. He is sleeping through the night, he is content during the day (for the most part), he actually tolerates and may even enjoy his stander. Overall, he's just doing much better. His changed state of being is just confirmation that we made the right decision.

As a reward for making the right decision, we get a happier Christian and maybe some salted caramel gelato in our future.

Any excuse, right?  ;-)

Christian and his girlfriend, Jada. He seems to light up everytime she's around him. And I love that she's loud and boisterous around him. She gets right in his face and isn't scared and I think he likes her high pitched Mini Mouse voice. When her mom told her to kiss him, she said, "Nooo! I can't kiss him...He's a boy!"
Thursday, June 2, 2011

Extraordinarily Beautiful

We had preschool meetings #2 and #3 this week. The second meeting was for a team of therapists to work with Christian to get to know him and determine his eligibility for services. They played with him and took notes and Christian was just lovin' all that attention from a team of ladies handling him and holding him.

This particular team actually belongs to the school he won't be attending, which was a little disappointing. Not that he won't be attending Preschool Option #1, but that we've already met this team of therapists and they did his evaluation and they won't be working with him. I liked them all and they all liked Christian so I wish he had been evaluated by the team at Preschool Option #2. I compared the two in more depth here.

Anyway, the second meeting held on Tuesday was to play with him and evaluate him and the third and final meeting was today to discuss the evaluation, the IEP (Individualized Education Plan), and the decision of where Christian would start preschool.

Sitting down with a "team" is a little intimidating because you have multiple faces staring at you at 8 o'clock in the morning waiting for your reaction or opinion. I've also heard horror stories about IEP meetings so I had a thought flash through my mind - These ladies are going to try to tell me about my son and what they "recommend" and think he needs.

This was not the case, though. A majority of the summary of evaluations was basically from my own mouth about what Christian's abilities are. And I imagine they might seem a little intimidated by me being so involved and assertive about my son's education. I don't know, maybe not.

At the end of the meeting we discussed very easy and attainable goals and they asked me which school I thought would be good for him. I told them I thought Option #2 might be best because I couldn't see where Christian would fit in and get the attention he needs in a busy preschool.

I asked the team what they thought. And, of course, I would have liked them to tell me - "Oh no, he'd fit in perfectly here!" But he wouldn't. They, too, agreed he'd do better at Option #2, seeing as how overwhelmed he got visiting Option #1. He needs to have a positive start and a positive environment to thrive and I completely and whole-heartedly agree. Option #2 also has a lot more tools, gadgets, and equipment already there for Christian! He would get a lot more attention, especially since he'll be the youngest there. Peer interaction is important to an extent, but it's really no where near the top of our list for what's important right now.

And for God's sake, Option #2 has handicap accessible, automatic doors that are wide enough for a wheelchair. Nothing says "not belonging" like doorways that don't even fit a stroller through without struggle, let alone a wheelchair, and LET ALONE not even being automatic! It's the little things, ya know?

So Christian is starting school in August. My big ol' baby boy. And this thought makes me a lot of thing. It makes me want to cry, it makes me excited for him, but most of all it makes me thankful.

I am so thankful that I live in a time and in a country that doesn't forget about Christian and write him off to an institution. It wasn't that long ago that an institution would have been his recommended fate. I am so thankful there are laws to not only protect Christian, but to ensure that he, too, has a right to an education. I am thankful he isn't forgotten. I am also ever so grateful that Christian is here, alive and breathing, to make decisions for.

And I'm thankful that on this extraordinarily beautiful June morning in Tucson, we had the privilege of deciding where Christian will attend his first day of school. And that is extraordinarily beautiful.

Popular Posts