Happy Halloweeny!

Christian was dressed up this morning to go to school! He was Wilbur the Wildcat for Halloween.

Bear down, Arizona!

Bear down, red and blue!

(That's our college fight song and Wilbur is the UofA mascot.)

And Lola was a ballerina fairy. If it were up to her she would have gone as a naked person
(we're in that stage). But since that's not appropriate she went as a fairy unless she could maneuver out of her wings. Then she was a ballerina.

We didn't know if Christian would be up for trick or treating because evening is usually his whiny time and then he goes to bed pretty earlier following the whine fest. But tonight, he changed things up a little. Probably because he knew there would be candy involved if he behaved. And he got to come trick or treating with us for a little while. He did so well and loved being outside in the dark away from the evil sun that hurts his eyes. He was also very comfy in his new wheels. Yes, Christian's got some new wheels and if you look closely enough you can catch a glimpse of his new ride. More details to come!

And what kind of parents would we be if we didn't let the kids enjoy a little sugar before bed time?

Happy Halloweeny!

Mini-depression-retreat-hangover.

It's been a week since I came home from the retreat.

When I finally arrived, after getting off the plane I was surprised to find my whole gang waiting for me. Manny, Gabe, Christian, and little busy-body, Lola. As soon as Lola noticed me, she yelled, "Ma-ma!" and ran for me. I missed all of them so much and I gladly welcomed the October heat (yes, I said heat) as we made our way out of the Phoenix airport.

Although I was so happy to be home, sleeping in my own bed with my family at arm's reach, I couldn't shake this nagging feeling. I didn't even know what to call it. I just felt...down. I felt like I brought the overcast gray of Seattle with me.

I thought it was just me trying to get back to my day to day routine. But with every passing day of last week I was still feeling off. Like I couldn't get into my groove.

Four days of this went by. I saw another one of the moms from the retreat post in our message group about feeling the same way. Finally I posted something. And everyone was feeling the same thing! It was like a mini-depression-retreat-hangover.

After my feelings were validated by my other fellow mommies, I mulled it over in my head as to why something like this would occur. I think it's because for four days we were able to pause. For four days we intertwined conversations about our favorite wine with which therapies we had tried for our kids (fittingly paired?). Conversations of our favorite TV shows intertwined with medication jargon and seizure control. It was effortless and normal. It felt really normal. Nobody was on the other end of the conversation politely indulging me about the latest happenings with Christian. When I told of Christian's progresses, however minute, I wasn't met with a look of Is that a good thing? Instead I was met with looks of understanding and feedback and all sorts of things that don't happen in my everyday life. These four days became more "normal" than my normal back home.

So it wasn't surprising that when I got back home it felt a little less "normal" because of my overexposure to "more normal" if that makes any sense. I felt sad to leave that silent understanding that exists in our little tribe.

The great thing, though, is that as soon as my hangover feelings were validated by just about every single member of our tribe, I felt so much better! It was like Poof! A complete 180. I was able to get back into my groove and the entire experience - the four days and the retreat hangover - has taught me a lot about connection and appreciation. Feeling down has been replaced by an overwhelming feeling of gratitude for having had this opportunity to learn from others and to meet these amazing women. There's a sense of belonging that is like no other. And I can't wait for the next retreat!

So thank you for indulging me. I felt like I needed to blog it out.

A Story.

I used to work with a woman who had a very hard exterior. She was really aggressive and I had formed my opinion of her as soon as I met her. Without even knowing her much.

It wasn't until I had a conversation with her one time about her children that I got the full picture of who she really was. She lost a daughter to cancer at five years old. And as I watched her tell her story, it was evident there was still pain there. It was very apparent that this event had shaped her and stuck with her, heavy and cold.

After that it was different. I felt differently about her, of course. How could I not? At that point I had no idea what pain could do to people.

That same woman came to Christian's hospital room to visit him when he was in the PICU full of tubes. Out of all people, you never know who will rise to your occasion.

And you never know someone's story until they tell it. Everyone has a story.

 I am the first one to admit I am judgemental and anyone who knows me knows this and can vouch for me. It's a character flaw. I'm working on it. I have no choice to as I meet people from all walks of life and we share a bond of tragic events - not the ideal bond - but a bond that lasts forever and never, ever goes away.

I've blogged about this before, but you really never know what is lurking beneath the surface.

Frankie from the show, "The Middle" reminded me last night...



I wanted to stand up and cheer. Cheer for my own need for others to understand and cheer for those of whom I should offer compassion and understanding.

Tough Chicks

I met some beautiful people this weekend. They share my story. They walk my journey.

These story-sharers, these journey-walkers, they're tough chicks, like me. I say that because a good friend of mine told me I was a tough chick and I liked the weight of it.

I had the blessed opportunity to meet these tough chicks at a retreat outside of Seattle. Not only are we all tough chicks, but we're all mothers. And we all have children who've nearly drowned. We all experienced catastrophe. All of our stories are similarly told with great care in how we tell them. No matter what the circumstances of the initial drowning, all of the stories of these children are eerily similar. When we tell our stories, we all tear up as if we are hearing our own story about our own child.

I didn't know what to expect with the retreat. It was the first time leaving all of my children AND my husband. In fact, I hadn't travelled by myself since I was a teenager. I still say, "Excuse us," in stores even when my children aren't with me. So this was a big deal. Although I didn't know what to expect, in general, I knew I'd get some uninterrupted sleep.

We visited Seattle. And when it was time to decide what to do next - Space Needle or more sight seeing - I was told, "It's up to you. It's your trip to Seattle." What?! My trip?! My kids aren't tired or hungry? Christian doesn't need to be fed? Where am I? - I thought.

The first day there at the lodge I did a lot of nothing. I ate candy and we played card games while we waited for all the other ladies to show up. I still wondered what exactly we were going to do. Were we going to cry? Were we going to bare our souls in therapy sessions? Were we going to start a fire outside, hold hands in a circle and howl at the moon? What does one do on a retreat?

Well, we played card games. We carried on conversations off to the side about our kids and our stories and what happened on that day. We talked about therapies our kids were doing but we also talked about our favorite foods, Saturday Night Live, movies we've seen and the places we called home. We visited a cute little German town and I watched a new friend from Hawaii see her first fall leaves.

I've never seen such beautiful leaves than those that exist in the state of Washington. And I wasn't aware that nature even made trees in this color.

We all came from far away places but we are mothers with the same experience. We had beautiful children born full of hope and promise who smiled and called us Momma. And we are now mothers of beautiful children full of hope and promise who may never say a word to us, but who speak to us with their eyes and with their bodies. There will always be hurt way deep down inside, but we find joy in new things.

We're tough chicks.

So what did we do? It wasn't until I got home yesterday that I realized...we did NOTHING! That was the whole point. There were no alarms, no medication to administer, there were no feeding schedules, or PT. Nobody was obligated to do much of anything unless they wanted to. And Momma enjoyed her uninterrupted sleep, by the way.

Amazing women they were. There weren't a lot of tears of sadness, but, rather tears from laughing and tears of gratitude and of one mom relating to another.

I have to say a HUGE thank you to Sue Searles. She really puts her heart into this. She wants to make this happen for us and, even though she has her own little boy at home, she made this weekend perfect for us. Sue, you rock! It takes an extremely selfless person, in the face of struggle, to go out of their way to do something so nice and so healing for others.

Thank you:

Amy and Yoli for helping to make this weekend so awesome.

Kehau for chocolates.

Erin for slippers.

Lindsey and Julie for t-shirts.

Annie for the beautiful bracelets.

And, Tiffany, for the amazing accommodations! It was breathtaking.

Equipment Fairy

Christian had a whole week off from school last week so he just hung out with Mom, sister, and big brother all week. He was really relaxed and such a chill-baby that we made day trips to Ross, to the zoo, and to Jamba Juice for a Pumpkin Smash smoothie.

He was good and ready to get back to school this morning after his week break and he'll be starting his preschool transition program where he will go and actually participate with the other preschoolers in music class and circle time. I can't wait to see how he does.

His speech therapist that comes to the house said last week that he was the most alert and attentive she'd ever seen him and tracked from left to right, keeping up with the object almost at the speed she was moving it. Then the OT said that she confirmed with the PT at school that they had both noticed an improvement in Christian's alertness and attention.

Manny and I have both noticed this, too. We had a discussion about it the other day and both agreed that it was a combination of things: The VNS and the blended diet. (If you look to the right I've added a page of Christian's diet and foods we blend and feed him.)

I'm also so excited that the equipment fairy is coming Friday! A few months ago we ordered a new Tomato seating system to replace the plane ol' Tumbleform. We also ordered an adapted swing for outside (or inside) and a new car seat for this growing boy. The best part...insurance covered it all! Some people are blessed with a lot of money at their disposal, some people are blessed with more therapy opportunities, we happen to be blessed in the insurance department. We've never had to fight or appeal for anything (yet). There's no secret. We just submit our requests and see what happens and I never presume we'll get denied. I just presume we'll get the equipment we ask for. It's like throwing it to the wall to see what sticks, which tends to be our way of life when it comes to Christian's journey. It sure does help to have a PT who's a master at writing letters of necessity and a pediatrician that is supportive and experienced in getting all of the requests signed and faxed to the right place in a timely manner. If it seems like I'm tooting our insurance horn, I am. We toot all the horns we can in this business.

I can't wait to see the new goodies for Christian! But it will have to wait until I get back. My near drown moms' retreat in Seattle starts Thursday! I'm so excited and so nervous. Daddy will be home with all the kids all on his own (Lord have mercy on him) and I'll be meeting old friends and new friends, some of which I've met and some of which I've never met in person but have been speaking to online for the past two years! We all walk very similar paths and I'm so humbled and blessed to have this opportunity.

Now, just pray that all of our kids stay well enough for their moms to travel!

Chris-septicon!

Dynasplint paid us a visit a couple weeks ago and delivered some pretty heavy duty leg contraptions.

So let's play "How Much Can I Tease Christian About His New Braces."

And begin.

"My new robot legs! I wonder if they come with remote control."

Meet the newest Transformer - Chris-septicon!

"Domo arigato, Mr. Roboto!"

You can stop now, Mom. - Christian

But I have one more! - Mom

"Run, Forest, Run!"

"Seriously, Mom? Stop. Now."

(Love this picture because he kept looking over at the lights on the camera every time it would flash. Pay no attention to the peaches I forgot to wipe of his mouth before taking this picture.)

But, seriously, I considered Dynasplints because they're a heavy duty splint. Anytime Christian ever feels pain, irritability, anything unpleasant, or sometimes just because, he goes into extension. His legs straighten out in front of him and his toes point. His legs are even starting to turn out and hyperextend a little at the knee. So a heavy duty splint was in order.

The splint keeps his leg bent a little at all times. Because Christian's resting position with his legs is extended, the splint just gives him that constant stretch and relaxation in his knee. They don't allow him to extend all the way when he has them on. And he doesn't fight the brace. When Christian has the right amount of input and relaxation, he goes with it.

We've worked with them before, long, long ago when he was accidentally ordered elbow braces to straighten his elbows. He never needed this because he's not really locked up in his arms and has pretty good range but we would put them on anyway. It was almost like it gave him pressure in his arms and when we took them off he was a lot more aware of his arms being a part of his body.

The good thing is that even though these look like a torture device of cruel and unusual punishment, they're actually quite comfy. Christian doesn't seem to mind them at all and inside they're lined with foam padding and furry Sherpa-like material. So they're pretty plush.

We have a wrist brace on order that will help him with his right wrist, which tends to drop. Again, we need the stretch for him and a little wrist support will help him use his wrist in a more functional way.

I already like the brace. I'm not a brace nazi, though, which means I don't insist he keep any brace on if he's upset. As with any brace, if he cries at all, those are the first to go. He has enough things during the day that make him upset, I don't need to add one more.

So Dynasplint is here and we have these awesome braces, of which have already made a difference in the tone of his legs. So far some mild success. And we like success.

(Domo, domo!)

Relationships.

When Christian's accident happened I remember the waiting room filled with people. We were visited and prayed for by friends and family - some we see every day, some we hadn't seen in years, some we had honestly never met before.

I've been in a very reflective mode lately and as I look around and consider who is in our lives today it is a very different view. Not bad, just different.

On one hand, we've had the privilege of meeting some really courageous and invaluable friends who walk this journey with us and who've shown us the way. There is a phrase a lot of parents use who've gone through something like what we did - I wish I didn't know you, but I'm glad I do - or something like that because of the circumstances that brought us together, we wouldn't know each other otherwise. I've always thought it kind of had a negative undertone. One, because I've met people under normal circumstances that I wish I didn't know; and, two, some of the relationships I have with other parents are anything but negative. So, rather, I'm really glad they're in our lives, whether we met through tragic circumstances or at a play group.

On the other hand, people got on with their lives. We got on with ours. And as time went by, wonderful people infiltrated into our world, but there were those who drifted out.

There are various reasons for the drifters, and I use the term lovingly and with no malice. I am sad about some of those drifters - actually, more disappointed. Maybe we didn't act the way we were expected to, and maybe they didn't act how we expected them to. Or maybe it was all just too much. Or maybe it's because my tolerance for bullshit is shortened and my perspective on what's important in life doesn't allow for a lot of the aforementioned bullshit.

Whatever the reasons I guess it is what it is. I'm not good with immediate change in my routine. But eventually it clicks, I adjust, and move on accordingly. I've heard that's called acceptance.

That's really what it's about anyway, right? Acceptance? I have a longing to recreate the old relationships we used to have, the ebb and flow, but it can't be forced. In fact, I'm finally looking at it from an outsiders perspective and that ship has sailed. If I don't stop to look around, I might miss what is right now.

What is right now? What I know is true right now (Oprah, anyone?) is that the people in our life right now can rally. These people are hard core. What I mean by that is that our support system is top notch. A lot of them were in the waiting room two years ago, and God bless 'em, they're still here with us now. Some of them, and they know who they are, I knew I could count on. Some of them I'm blown away that I can count on them. Not because they were unreliable before, but because they've gone above and beyond to be there when it counts.

And the friends who are still trucking along...I thank you. You teach me how to be a good friend, something I finally have time to work on. It's something that's important to me. Friends like these continue to treat you like nothing ever happened, they don't treat you with kid gloves, but if you want to talk about what happened, that's okay, too. And they forgive you if you can't make it for the fifth time, and they still invite you anyway for a sixth time. Invaluable.

So the past few weekends I've been surrounded by old and new friends and I play over and over again how lucky I am to be graced with these friendships. I'm learning to stop mourning the old relationships and start loving on the new. I'm not the only one in the whole wide world who struggles. And today my thoughts and prayers are with a friend who takes the first step in a new journey today. She's about to kick breast cancer's ass. There might be struggle and it might not be pretty, but she's a tough chick and she's stronger than she knows. That's hard core.

Some perspective for your Tuesday morning.

The GI Interrogation.

We visited the GI doctor the other day. We hadn't paid him a visit in a good six months. Not since Christian was on the keto diet. And not since we transitioned to a blended diet through his tube.

I think that appointment can be shelved away in category: Sucky Appointments That Make Me Feel Like Crap.

I had to take a few days to sit with my thoughts about the whole thing. I'm still wondering about it. I'm still wondering if we should ever go back there again.

When we first visited this doctor, he had all the answers and really helped us figure out how to get Christian to stop throwing up. He's very smart and it's evident his brain his working faster than he can talk. And he talks fast. But over the next few appointments he started to take on a condescending, questioning (disguised as a voice of devil's advocate) tone, and it really started to irritate me. But I chalked it up to him just being a doctor and using his doctor voice.

A while back I mentioned to him that I'd like to explore a blended diet through the tube. I don't remember exactly what he said but it was definitely not supportive. He shut the conversation down quickly. And if I remember anything I do remember him saying that "formula is a perfectly acceptable form of nutrition for g-tube fed children."

Rehearse much? Jeez, read that off the back of the can, Doctor?

Anyway, we visited the GI doctor on Monday. We needed to renew a prescription and I was also interested in running some blood tests to make sure Christian was getting everything he needed. I also wanted to keep the GI doctor in the loop since so much had changed.

As I mentioned, I'm still trying to sort some of the conversation out, but these are some of the examples of what the doctor said and my corresponding thoughts:

*I will also be referring to Group A. This group is a renowned therapy group specializing in feeding therapy and tube feeding. Our OT is from Group A, which is not their real name, but due to the nature of some of the comments from the doctor, I don't know if I should mention any names.

Me: "Christian is now on a blended diet."
Dr.: "And why did you decide to do that?"
Me: "I was always interested in whole foods for Christian, but he wasn't holding formula down so I decided to go for it because it was at least staying down."
Dr.: "You know there are other things we can do for that. So besides it helping the vomiting, why else would you choose to give him a blended diet? Are you with Group A*?"
Me: "Our OT is from Group A."
Dr.: "That's what I thought. Nobody in this area or surrounding areas decides to do a blended diet except for people working with Group A."

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

Dr.: "He looks orange. Does he look orange to you?"
Me: "No." (Confused.)
Dr.: "Are you sure? He looks orange to me. Are you feeding him squash?"
Me: "Not lately. Are you sure it's not me? I wear self tanner and it makes me orange. Are you sure I'm not reflecting off of him?" (I promise I actually said these words.)
Dr.: "No. It's him. He looks orange. Watch, hold your arm up to his. You don't see it?"
(No, I don't see it, weirdo.)

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

Dr.: "So why else would you decide to give him a blended diet."
(Didn't I just answer this question?)
Me:. "He's always had problems with formula, since he started it right after the accident."
Dr.: "Well, his weight hasn't increased by much since last time I saw him. Real food can not reach the calorie content formula has. Real food at it's highest calorie content is only 2/3 of each calorie in formula."
(This is where it gets weird. When Christian was on formula he was gaining too much weight and dr. said something about him being 33 pounds. Then he said something about him loosing weight. But he said Christian shouldn't have gained so much weight! And we saw him six months ago! Was he supposed to have gain a bunch of weight since then? He weighs 29.75 lbs. now. And is right on the curve, by the way.)
Dr.: "The body craves what it is lacking and since Christian can't tell us what he craves, how will you know what to give him?"
(Lola has never told me what she 'craves.' And, p.s., I crave sugar all the time and I highly doubt I'm deficient in sugar because I eat it all the time.)

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

Me: "I just want to see him one to two pounds heavier."
Dr.: "Why?"
Me: "Because I'm his mom and I want to see him robust and solid."
Dr.: "But he's not a baby anymore. Four to six year olds are the skinniest they'll ever be in their life. So it's normal for him to look skinny."
(Weren't you just concerned he wasn't gaining enough weight fast enough?")

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

Me: "I give him kale, apple juice, avocado, olive oil."
Dr.: "Now olive oil can slow things down in the digestive track."
Me: "Actually, he's never been more regular. And it was over night after we started adding blends."
Dr.: "Oh was there a regularity a problem before?"
(No, we just have a prescription of Miralax in his chart for fun. Did you read his chart?)

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

Dr.: "Well it sounds like you are doing a great job at getting him what he needs. If anything I'd be worried you're giving him too much of something...this isn't taking over your whole life, is it?"
Me: "No! I love cooking for him. It feels like he's more a part of the family. It feels less like a medical procedure, like I'm just plugging him in and walking away."
Dr.: "Yup, that's Group A! Those are their partying words!"
(Swear to God, he said 'partying words.' I think he meant parting words. But he seemed pissed off while he said it.)

And then he walked out of the room and I didn't see him again.

I felt interrogated.

There were a lot more little comments he made. But it was like he was insinuating that Group A was swooping down on poor, innocent, formula feeding families - happy in their ways - and pushing evil whole foods on us. And we had no choice but to give our kids a blended diet, because Group A pushed it on us!

That is not the case!!! I have been interested in it since day 1! I asked my OT about it and she gave me a book to read written by the founder of Group A. And then she left the decision up to me. In fact, I made the decision on my own and made the transition. I've asked for suggestions from the OT, but she has never, ever, ever, EVER pushed a blended diet on us. I've also sought out the bulk of blended diet information from...shocker...OTHER PARENTS!

I swear I have never met so much resistance. Even the doctor's own assistant was intrigued by our choice to go blended. Even his assistant! Christian's pediatrician is in total support and even said it's better for him. So why the attitude? Why the lack of respect for our choices? Why be so condescending?

And just because Christian is tube fed, does that make him unworthy of whole foods? Why is this not possible in this doctor's realm of thinking? Why isn't this a practical choice? And why isn't that choice respected?

I'm not mad about this, if that's how I come off. I feel worried. Worried for myself and worried for other families. What if this guy has a bone to pick with Group A and wants to make an example by taking some kind of action? What if he doesn't think we're nourishing our child? I'm confident we are but what if he's not. Then what?

So talk about an interrogation. First he's gaining too much weight, then he's loosing weight too fast, then he hasn't gained enough in the last six months, then maybe he should be skinny, then he looks orange, then maybe he's not getting enough calories, but then maybe he's getting too much of something, then it's all Group A's fault.

Can you say mindf**k?

Finish Line

We all came off a weekend of stuffy noses and colds. Christian has decided to carry it into this week so he's been grumpy, groggy, and not feeling very well.

I also had an interesting appointment with the GI doctor that I need to take a few days to process before I step up on my pulpit. But, rest asure, you'll hear about it.

For now I leave you with one of my proudest accomplishments.

Oh, did I mention I was in a 5K last month? No? Oh, I did. Well let me show you just one more picture.

I got my hands on a picture of us right before we crossed the finish line. My favorite. And Christian's, too. If you zoom in you'll be able to see just how pleased he is with the situation.