Inevitable.

Last week we finally had our follow up appointment with the orthopedic doctor. But this time we had our PT in tow, which helped us all better understand what Christian and his body are doing. Luckily, this visit was a successful one in that Christian was much more relaxed so we got really good pictures of his hips. The last set of pictures, taken about five months ago, showed that his hips were dislocating, or falling out of socket. This wasn't a huge surprise to us. At the time, the doctor estimated that one side was about 90% subluxed and the other was about 30%. But with these new pictures, it shows more like 60% out of socket on both sides, which is just what I suspected. I had a feeling Christian's positioning and tone exaggerated the previous pictures.

So what do we do? Well, the decision is to operate or leave it be. If we decide to operate now, we're told it will be a lot easier to place the hip back into the socket. But it's a big surgery with a partial body cast that lasts for six weeks! I just don't know if it's necessary. His hips don't seem to be bothering him and he doesn't even seem really sensitive to rotation or sitting. The alternative is allowing them to fall out. And if they fall out, then what? This really isn't anything I considered when we started this journey. Just another example of the twists and turns that occur in life after brain injury with a child that doesn't walk or crawl. It was easy for me to accept because it made sense. He never even took his first unassisted step at the time of his injury. So the odds were stacked against him.

Let me share my biggest concerns. Because Christian doesn't bare weight often, his femur bones are very fragile and very thin. We've had a few fractures already. I'm afraid if they cut into them, which is what the surgery would entail, there will be problems and his bones will not be strong enough for the hardware. I'm also concerned that we will be traveling down a road of more issues and surgeries caused by the initial surgery. If surgery is inevitable, I want to wait until it is absolutely necessary.

The doctor said he is okay with whatever we decide and that he can make an argument for both sides. He did suggest a minor, outpatient surgery to Christian's knock knees. Because they are pulling inward, it actually puts more pressure on the hips while pulling them out further. So this would straighten out his crooked legs and hopefully slow down the subluxation of his hips.

After discussing this with my husband, we're both in agreement that we want to hold off on surgery. We'll check his hips every six months to see what they're doing. But, we are considering the outpatient knee correction.

You know, I'm at peace with the idea that, barring any Divine intervention that God might bestow upon us, Christian won't walk. It's honestly not a big deal to me. If he enjoys life and is happy and healthy from the comfort of his wheel chair, I'll be a happy Mama. And because we're not trying to protect abilities like walking, hips falling out of socket is not a devastating idea, as long as there is no pain involved. We have to ask ourselves - Why are we doing this? We're not protecting his ability to walk. It will always go back to pain. If he isn't having any, we're just not going to make any moves.

In my Mommy heart, I firmly believe that if his hips fall out of socket completely he will be fine. If, for one second, that belief is challenged and Christian begins to experience pain or discomfort, then we'll reevaluate. I think when it's time for surgery, we'll just know.

The walking wounded.

In first aid and triage, the walking wounded are injured persons who are of a relatively low priority. These patients are conscious and breathing and usually have only relatively minor injuries; thus they are capable of walking. Depending on the resources available, and the abilities of the injured persons, these people may sometimes be used to assist treatment of more seriously injured patients, or assist with other tasks. - Wikipedia

I was reading a review about a new movie coming out about a family grieving over loosing their husband and father to 9/11. The review referred to the boy in the story as the Walking Wounded.


Walking wounded.

Such a perfectly simple description of those who have endured loss, pain, and grief.

So I googled it.

...conscious and breathing...capable of walking...

I write a lot about intentionally seeking out joy and happiness and it really being a choice in life. In our lives we've made a conscious effort to do this for our sanity and the happiness and survival of our family.

When the accident first happened with Christian, I mistakenly thought things would gradually just get better and better. I had sad days, but I was certain that eventually they'd go away.

I'd have rough days, very emotional weeks, and then I'd be over it. Happy again. Rough days were behind me and I was forward, full steam ahead.

Then out of nowhere, I was sad again. It would be set off by a picture I had never seen of Christian as a baby, happy and wide eyed. It could be for no reason at all and I was right back where I was in the beginning - broken hearted and just...well, broken.

It's called grief. And if I take myself and my emotions out of the equation, it is quite fascinating how this little bastard works.

It weaves itself in and out of our lives, piercing everything it touches. It makes us feel awful, it makes us feel validated, it makes us feel cleansed. It wraps itself around our old family photos, and sits heavy on our hearts when it is quiet and we're alone.

This kind of grieving - the grieving of a special needs parent - it comes in what I can only describe as levels.

When we left the hospital, as I said, I thought things would just continue to improve and improve and improve. Maybe Christian would be slightly delayed. But he'd catch up, right?

Levels.

I've learned from other parents. I've seen their grief. And it, too, is in levels. Half way between life and death.

...He's not smiling...She doesn't even move...He has a trache...He has pneumonia and he's in the hospital again...surgery? again?...He won't stop crying...She won't sleep...She throws fits...He has neurostorms...She has seizures...medications aren't working...We have to meet with the palliative care team...we have to keep him comfortable until the end...He doesn't like to be touched...He can't see...She doesn't talk, just screams...Does he even know who I am?...God, just let him make it through the night...Why are other children doing better than my child?...We need miracles...

Levels of grief.

Level 1 - We think there may be seizures. Level 2 - Medications aren't working. Level 3 - Seizures are intractable.

Level 1 - He probably won't walk. Level 2 - Not enough weight baring. Level 3 - Bone quality is deteriorating. Level 4 - Hairline fractures. Level 5 - Dislocated hips. Level 6 - Painful surgery.

Each level is a new found pile of grief to step in.

And they come in little droplets or they come in waves. Grief hides in things like cartoon characters you're child should be obsessed with. It's waiting in thoughts of grandchildren that will never be. It's all over your spouse's face when he talks about playing catch someday with his son, or his dreams of it, anyway. It's there. And really never, ever goes away.

When I hear the stories of mothers and fathers of children who've passed, I feel their grief. It goes beyond the polite, "I can't even imagine..." Because I can, and I do, and I can feel it. It's a heightened perception of pain that I now possess and part of me is thankful for that. The other part of me wants to give it back.

Luckily, grief doesn't stick around for too long these days. But all too often I meet or hear about families who are just at Level 1. And I'm sad for them and their long journey ahead.

The movie review called the little boy the Walking Wounded. But the most important part was when he said, "...But he is still walking."

We're still walking.

The Verdict: Spine and Hips and Curls

We visited Christian's orthopedist. It was as expected. Not great. But not the end of the world.

The verdict:

HIPS:

About a year and a half ago, x-rays showed about a 30% slippage on both sides. Now, the doctor estimates his left hip is about 90% out of socket and the right one is about 15%. It makes sense because Christian's left side is his tighter side. Christian was also tighter than usual today and so I think the numbers might be off a little with the left hip maybe being around 80% (maybe not) and the right being more than 15%. The estimates were also done by two different doctors at two different hospitals in two different states so there is that.

SPINE:

If you look in the upper right hand corner by his neck you can see his VNS. Look below that and you can see part of the device where the screen cuts off. Cool!

Christian has about a 45 degree curve to the right. It's at the bottom of his spine so it doesn't threaten any major organs at this point. We're working on stretching that right side out at the hip.

First, I have to say we are blessed with an excellent ortho doctor. He is kind, knowledgeable, and conservative with his recommendations. Having a doctor like him makes it easier to handle news like this and make a plan.

He said regarding Christian's hips, we can let the left hip go ahead and fall out of socket or we can operate and put the hip back in the socket. He said he has had patients do both and has had an equal amount of success and failure with both options. We are going to take another look in three months. If there will be any surgery, it will be on summer break.

As for the spine, at this point the doctor wasn't too concerned about it. If it gets any worse we might have to consider spine straightening surgery, but we're now on alert that we really have to be diligent in stretching and straightening that spine as much as possible. He didn't suggest a brace and actually discouraged its use, but I'm not sold on that. I'm still going to research the option.

We both agree that at this point, unless something is causing pain, we are hesitant to plan any surgeries. We'll reconvene in three months and come up with a better game plan.

And my feelings on the subject...I was fine all day, really. I hyped myself up for an appointment with horrendous results. I don't know what "horrendous results" would be - an arm where a leg should be? I just psyched myself out. The appointment wasn't horrible and the results were nothing I couldn't see on my own or anything I didn't already know.

I still need to process this. I know as my medical mind is put to bed, the mommy mind and heart emerges. Then it's different. Then it stings.

But it's still the same old Christian. It doesn't change who he is right now, but I firmly believe that knowledge is power and knowing is freeing. We now know what we're dealing with and we can move forward.

We'll have some big decisions to make in the future, I'm sure. This is part of Christian's life.

But tonight we decided to focus on the beautiful head of curls he's growing.

This is after bath time. And clearly, before bed time.

He is a precious, angelic, broken little soul.

And we deeply love him so.

Updates on Blendy-Blends

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

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

What?! It's cute!

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

More discoveries about blendy-blends:

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

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

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

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

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

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

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

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

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

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

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

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

The Secret

Sometimes I feel like I'm on a hunt for some sort of secret. Like I know an answer exists to help Christian's tone. I know an answer exists to stop his seizures. I know an answer exists to help him laugh and express himself. I feel like an answer exists, I'm just not privy to it. So I have to hunt and calculate and eliminate and guess and still...I feel like there is a secret being kept from me and sometimes I have no idea how to figure it out.

Christian vomiting is no exception. It's perhaps one of the biggest secrets that I often feel so close to unlocking.

His vomiting comes in cycles. He'll do amazingly well for months. And then out of no where, throwing up is back. Usually, it's brought on by some kind of unsettling in his system. That's pretty obvious, but it usually coincides with illness, colds, teething - again, another secret.

The blended diet has been awesome for Christian, but when Christian got a cold a few weeks ago, he was what I like to call "juicy." He had a lot of mucous in his throat and nose. I've mentioned before that the doctors initially said he had no existing gag or cough reflex, hence the trache placement after his accident. The irony of the situation is that now Christian has a hypersensitive gag! This means that more mucous in the throat leads to gagging. Cut to Christian throwing up his dinner.

I could be having the best day of my life. If he throws up, my day is crap. It flips upside down in a minute. Know why? Because I take it personally. I feel like I'm personally responsible for not figuring out why it's happening. And if I know why it's happening, I'm personally responsible for not figuring out how to make it stop happening. It's all a secret.

Christian has been vomiting again due to some leftover juiciness from the sickies he had a few weeks ago. See I know why, I just don't know the secret to making it go away short of waiting it out. Which, by the way, after all the wracking my brain to find a solution, is what will be the secret. Waiting.

It still doesn't make it fun. Last night he threw up. He had a tough time in the evening holding his food down. Day finished. I finally started venting to my husband. This is how it went...

I feel like it's a big secret!

And I don't know the answer!

I try everything and it still comes back!

What iiiiis it?! Just somebody tell me so I can do it!

Yeah, that was me. And I believe I've vented the same questions for seizures, the keto diet, fill in the blank.

He had very simple words: Maybe we aren't meant to figure it out. Brain injury has a lot of mysteries. Maybe we're not meant to figure out those mysteries yet. Christian is doing well, otherwise. We're doing the best we know how. Well, at least you are. I just watch.

Isn't he a funny one?

Is that the secret? Not trying to figure it out? Some parents decide never to question the doctors or specialists. They just follow the direction on the prescription bottle. Are they on to something? Are they the ones who have it right?

I don't know. Every family does what is best for them. But I'm a big believer that when we know better, we do better. I have this incessant need to understand. Because then I can move forward with a plan. But if I don't understand I can't move forward. And, believe me, I've tried my hardest to follow the whole lean not on my own understanding thing. But for a girl who has a need to understand things, I'm not really great at following the aforementioned instructions. And there are only so many times I can repeat that line about understand before it becomes white noise.

Maybe it is as simple as remembering I'm doing the best I know how.

The good news is that even though Christian had a cold and even though he's been throwing up a little bit, he has gained a whole pound and a half. He's finally at the weight I'm comfortable with - a tall 31.5 pounds. Speaking of secrets, I finally found the secret to getting Christian to gain weight. (I added in extra feeds by making sure Christian eats more frequently during the day, just in case you were wondering.)

This is a good secret to have uncovered because being that Christian is on the blended diet, I am directly responsible for all of his nutrient and calorie intake. So, of course, if my child isn't gaining weight I feel responsible. Just like any other parent would for their child, whether they were eating by mouth or through a tube. Gaining 1.5 pounds is parental success for me.

Despite this recent frustration, I know it will pass soon enough. And looking back to this time last year, Christian is doing so much better now than he was then, which is a testament to how much we have gone through, changed, tweeked, and altered to get him to where he is now.

We've done and are still trying to do the best we can. Simple. No unlocking of secrets required.

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?

What's Christian Eating?

Back in June we embarked on another journey to blended diet land. I must admit that in the beginning I was unsure, overwhelmed, a little lost, but I knew one thing...I just wanted Christian to be healthy. And no vomiting.

Just a quick synopsis of what led to the decision to go blended: Christian threw up from the first formula feed he had after his accident, sometimes multiple times a day, but every day without fail. Then we changed to an elemental formula that was easier to digest. But the vomiting and reflux persisted for months. We finally visited our first GI doctor who gave us the miracle of Renitadine (an acid reflux med) and that cured all, it seemed, for about a year. Then we switched to the keto diet, which didn't give us any stomach issues with vomiting but did give Christian a lot of constipation. As soon as he came off of the keto diet he started throwing up again. And then it got worse and I couldn't understand why! It was the most frustrating thing! How could something that used to work just no longer work anymore? We were using the same brand of formula, the same medicine for reflux, the same volume, what the hell?!?!

Enter the blended diet.

I first started to introduce it when Christian just wasn't holding feeds. Or he would throw up at least one a day in a large volume. In anticipation of starting the blended diet soon I had purchased a Ninja chopper/blender. So I had that on hand to blend up some banana and avocado. I really didn't know what I was doing. I just tried to figure - what would I feed him if he were sitting down at the table right now asking for food? He held it down better than the formula because, at the very least, the blends were thicker.

And the blending commenced.

I've learned a lot about calories, foods, allergies, and combinations. See, it's all well and good to think - Oh, I'll just give him this! It's 300 calories. But Christian has issues with volume and speed. This means that he can't tolerate large amounts of food pushed into his stomach at once. That is a sure fire recipe for it coming out Exorcist style all over you. So if 300 calories makes a blend that is 300mL and Christian can only tolerate half that in one feeding, well that's only 150 calories. And we're shooting for 1000 a day! This is where it gets hard and this is where we have to get creative. In the beginning of our blended journey he actually lost 3 pounds and I freaked out thinking I was doing a horrible job and what was I thinking and why am I doing this.

But we finally got into a groove. The most immediate benefits were his digestion and constipation. He went from constipation + Miralax = earth shattering, spackled blow outs every few days that were so vile we needed a hazmat suit to change it, to consistent regularity. They don't smell nearly as bad and they come every day without fail without Miralax. They don't hurt him, he doesn't strain, and he's a lot more comfortable. By the way, I have never talked about poop in my life as a conversation topic as much as I have in the last few months, just for the record.

Other benefits are that he's a lot more alert, he gets a variety of foods, it feels like he's eating what we eat and it feels less medical. Benefits also extend to me - the Mommy! One of my favorite things about Christian's new diet is that I get to prepare it and I take a lot of joy in that. It does take work, it does take a lot of preparation, but I do it lovingly counting calories and blending knowing that I'm cooking for my son.

We are not perfect at this. We are not purists. So if we have something for dinner that is well rounded, it goes in the blender for Christian. I also have some quirks I've developed like I make two blends every day. Here are examples of Christian's menu:

Fruit/Grain/Yogurt Blend:
1 Banana
1 Avocado
1 Greek Yogurt
1 cup of Cheerios
8 oz. apple juice
1 jar of baby food (peaches, apple cinnamon oatmeal, or something high calorie)
Frozen strawberries or blueberries
1 Multivitamin
...and some other stuff

Veggie/Meat/Grain Blend:
1 Bushel of Kale or Collard Greens
Spinach
1 jar of baby food (high calorie meats)
1 jar of baby food (squash or sweet potato)
8 oz. of apple juice
Apple sauce
1 boiled chicken breast
1 cup of whole wheat pasta
2 tbl. of olive oil (for calories)
1 multivitamin
1 scoop of protein
...and some other stuff

I make two blends because I just don't like the idea of blending everything together. Nobody told me this was bad and if I can bring myself to do it, it won't be so hard to think of things to make these two blends 1000 calories each. It's just a quirk I have. Fruit and meat blended together? Gross! Some of the fruit blends I make him I'd eat myself, they're so tasty! I should get over it, because, like I said, it would be easier to make one blend a day. But right now, we're doing two.

The examples I provided above are by no means absolute. We trade out. I've added peanut butter and Nutella to boost calories but it seems he has tummy troubles when I add these so I don't anymore. I've added Nutrigrain bars, apple sauce, graham crackers, and homemade mac and cheese. I use apple juice because it's great for constipation. The dietitian isn't a fan because of the sugar but it also has calories so for now we're sticking to it. It's harder to find calories when you can't add a lot of dairy. And another thing, I'm not really that comfortable with cooking meats for his blends other than boiling chicken breast. So for now we do baby food meats, which are already blended and have the calorie count right there on the jar.

We found out Christian was having trouble with dairy after I took him off of it for a week to see what would happen. Nothing happened when I took him off the dairy but when I put him back on it, he started having some diarrhea. The pediatrician suggested adding Greek Yogurt (which is super delicious, by the way, and I think Christian should share this with me) so we do that and we also sometimes add scrambled eggs and instant breakfast powder for extra calories.

With us, it's all about the calories! That's why we use olive oil, too. Since Christian doesn't like a lot of volume, we have to pack as much into each blend as possible. The bigger the blend, the more calories we have to fit into it. And each blend is loosely calculated to 1000 calories each, which gives us 2000 calories for two to three days.

Because I'm paranoid about calories, I also added in 200 calories on a slow feed over night of his old formula. This gives me piece of mind that he's won't be seriously hungry when he wakes up. It also gives me piece of mind that he's getting that extra oomph of calories at the end of the day.

Good things for Christian's body - Kale and collard greens and banana and avocado. Both banana and avocado have a good amount of calories. Avocado is like calorie gold. Kale loves Christian's digestive system and Christian's digestive system loves kale. Do I ever eat it? Hell no. But it's great for Christian, so it's a regular on our menu. I just steam up a whole bushel and it all goes in.

So that's what Christian's menu looks like. It's a work in progress and I'm always experimenting with new things and new ways of giving him food. We don't use a pump for his blends because they're too thick and his stupid pump won't budge. So we bolus the blends (push the food in by tube with a large syringe). But we have to do it slowly. I leave him hooked up to a tube with the syringe at the end with food inside. Then I leave him to sit and play with a toy or watch the window blinds (he loves that) and every time I walk by I push a little in. It works for him. And since I've been doing it like this - no reflux or throw ups.

There you have it. Christian eats food through his tube. What I've explained works for us and us only through trial and error. I tried many times to follow what others were doing and when it wouldn't work for Christian I'd get really frustrated because that's how it's SUPPOSED to be! I had to ditch that attitude and go with what works. 80% blends is good enough for now with the 20% formula over night easing my calorie stress.

Just for your information, Christian is doing amazingly well! I seriously thought he would be out of it for days but he is alert, moving around, his incisions are looking good, and I'm excited about it.

We got a couple donations so thank you - you know who you are! We are so grateful! Please consider donating to help Christian and his friends participate in their first race!

Donate here:
http://www.active.com/donate/myteamtriumph/christiansjourney

Happy Blending!

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!





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!"

Crazy Food Pump Ramblings

Coming off of a blog about kindness, this blog may not seem very kind.

But I don't think feeding pumps deserve any kindness when they beep at me and read "FEED ERROR" for no apparent reason.

It drives me insane.

I've gotten so enraged by this little necessary evil beep...beep....beeping at me that it won't budge another milliliter of ketogenic formula and it won't give me an answer, that I've considered throwing it through a window!

I've been so pissed off at this thing that I've yanked the tubing out of it, thrown the spare pump across the bed (onto a soft landing, but still), yelled at it, as if it were human and could understand. Maybe it is part human. And it taunts me.

I've even taken a meat tenderizer to part of the tubing on a bag that was clogged. The little plastic piece of titanium (or some substance mysteriously unbreakable) that hooks to the pump and pumps the food through never knew what hit it. Yup, the big mallet thing in the kitchen you only really use maybe twice a year, well it was used at least once this year. And I'm not ashamed to admit it.

But, alas, that mysteriously unbreakable piece of plastic is, in deed, unbreakable. The meat tenderizer was no match.

I'm sure this sounds like the crazy ramblings of a mother out of her mind, and it is! That feeding pump is going to get the best of me!

On a good note, Christian did GREAT with tasting yogurt yesterday. He moved his mouth and his tongue and gave great, big, hearty swallows quicker than he ever has. (Was it ketogenic? No. But our dietitian said a taste won't ruin anything. And nothing happened, so the yogurt stays.)

Hopefully he'll keep it up and we can say goodbye forever to that pump someday. And then that pump better watch its back because my meat tenderizer needs some usin'.

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.

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.

Europeds!

Okay, so I know I said we were taking a break from appointments a couple of posts ago.

Let me explain what that means - we are taking a break from all the extras like HBOT and cranial sacral therapy. We still have our routine appointment every now and then, but they are far from every week.

But I guess that all changed when I actually typed it out on the blog. After putting it out there, the appointment fairies all of the sudden started fluttering their wings. As such, we have our regular pediatrician this week to go along with our orthopedic doctor visit.

There's a reason we're seeing these guys this week - multiple reasons.

We've made the decision to go to Europeds...in four weeks!

Europeds is very similar to Napa in California. It's pretty much the same type of therapy. I had heard about Europeds, I don't remember where exactly, but I started researching while researching for therapy programs.

I do want to say that I still love Napa! I really do. But at this point, Europeds is attainable for us. Napa would have to wait until next year and the logistics of Europeds just fits for our family right now.

Europeds was the first of its kind to bring the intensive model therapy to the United States from Europe. It's affiliated with a doctors' hospital and is a nonprofit. I was really impressed with their customized programs. Christian will be attending a two week program. At the end of the program, there is a customized plan of therapy with pictures and instruction on how to continue the therapy at home.

One thing we do know is that with only just one week of intensive therapy, Christian gained greater head control and is able to hold is head up midline for a longer period of time. He started this after Napa and still has it and his PT has commented about it, too. We saw good, solid changes in Christian so this is the type of therapy we're going to pursue.

This is why we're visiting the pediatrician and orthopedic doctor this week. We need recent hip x-rays to determine the course of therapy for Christian. I'm praying there has been no change and that Christian's hips are still okay but I'm prepared for news that says otherwise. It's just how it is with these kids. We also need to get fitted for new splints for Christian because he is a giant and his splints have worn out their welcome, so to speak.

Wow, maybe it does sound like we have a lot going on, but to us it's just normal, I guess. Some parents travel for their kids' soccer or cheerleading tournaments, we travel for therapy. Same story, different plot. We're all just parents trying to make our kids happy.

The countdown begins! Europeds, here we come!

Second Opinions

THANK GOD FOR SECOND OPINIONS!!!

Let me back up...

In December we visited an orthopedic surgeon about different pops I heard in Christian's legs. I thought it was his knees, PT thought maybe it was his hips, so we x-rayed.

When we x-rayed, we went to a third party x-ray office. They determined that the x-rays showed "possible hip dislocation but x-rays were inconclusive." At the time I thought, "Okay, just pop those hips back in."

Hips are not like other joints you can "just pop back in." It's a serious and painful surgery. It's a huge deal. So the orthopedic surgeon, we'll call him Dr. H, suggested we cut his adductors immediately which would land him in a lower body cast for six weeks.

Mama Bear was not entertaining that idea. So we looked into Botox in the adductors, I discussed other procedures with another mom, but I kept wondering about it. Dr. H said Christian's hips were already 50% or more uncovered, or out of the socket. Dr. H. said he didn't think Botox or physical therapy would be able to make any difference. Surgery was really the best option for Christian at this point and we should do it yesterday.

50% or more? And in six months? It just didn't make sense in such a short period of time. And Dr. H never ordered a second set of x-rays. He made the determination for surgery off the "inconclusive" x-rays.

So I asked Christian's PT, OT, and EI lady and they gave me suggestions. I wasn't going to give it another thought but curiosity got the best of me and I called and made an appointment. I could get Christian in within a week. And, besides, I wanted to make sure we were putting the Botox in the most needed areas of his body. We didn't make it to the first appointment last Tuesday because I was sick and they were able to reschedule right away for today. All signs pointed to go.

The new orthopedic surgeon, we'll call him Dr. N, walked in. He was really nice and laid back and had an intern with him. He asked about Christian's history and I started to tell him, "Christian nearly drowned in July of last year..."

He said, "I'm sorry."

It came out of nowhere, but I felt a knot in my throat and I had to overt my eyes away from him. In moments like this I find that if I just keep talking the knot will go away.

He examined Christian and remarked that he was actually impressed with his tone and range of motion. Just by the examination and how wide he could get Christian's legs spread, he determined, "Adductors do not need to be cut at this time."

Then it was time for x-rays.

We were led back to the examination room after x-rays and waited for the results. I said a prayer out loud. I prayed that God would let us win this battle today. We don't get to win all of them every day, but this one...please?

Dr. N walked in with the intern and said, "I'm glad you came today."

Uh, oh.

He then proceeded to tell me that Christian's hips were 100% normal for his age. They are 0% uncovered. No dislocation.

CHRISTIAN'S HIPS ARE 100% NORMAL FOR HIS AGE!!!

I said, "Oh, thank God!" out loud. Twice.

Dr. N. went on to explain what this means to the intern and they did measurements on the x-ray and talked about what is within normal range for an 18 month old. I asked about his professional opinion about Botox and where it should go and he said, "I'm not even sure he needs Botox as long as you keep stretching him." He prescribed a special pillow for Christian to sleep with and asked to see him back in six months.

Christian's hips are normal right now. It might not be that way in six months or a year (although I have full belief they will be fine). But today...

...today this battle was won.

Poison

Botulinum Toxin.

Such a foreboding two words, really. Translation...botox.

And we're considering it for Christian. Oh, we're more than considering it. As soon as insurance gives the go ahead, Christian will receive two shots, one in each adductor, of botox. It's not just for crow's feet and laugh lines anymore, ladies and gentlemen.

Botox is now used in small doses based on weight for individuals with spasticity. This is what Christian has and what I'm talking about when I refer to his tone/tonal patterns. Christian has a form of what is called hypertonia or a stiffening or tightening of the muscles in his legs. He still has full range of motion and can be stretched out and we want things to continue that way. That's why we're doing Botox.

What Botox injections will do is temporarily paralyze the muscles that are so stiff or spastic. This will allow us to work other muscles groups around these paralyzed muscles so that those muscle groups can strengthen and, hopefully, reduce and/or eliminate Christian's spasticity.

Why is this important? Well...remember my post of about Christian's orthopedic surgeon? He seems to think it is of dire importance that we cut my son open to release his adductors immediately. When adductors are tight, this can pull the hips out of socket, causing multiple, serious problems. In no way do I believe Christian needs this surgery. Instead, I'd like to consider alternatives. That's why we're considering Botox injections.

So this is why we went to see the neurologist today. This isn't Dr. Hendricks, Christian's regular neuro at the HBOT center. This is...who I've referred to in the past as...Dr. Death. I know, that's probably not fair of me to call him anymore, but he's now a character in this blog and that's how people know him so who am I to change things? Long story short, this was the first neuro that saw Christian on the night of his accident. He has zero bed side manner and he was also the neuro who had no time to look at or explain Christian's EEG findings to me.

But we had to go to him because, apparently, he's the only person in southern Arizona who can do pediatric Botox injections. Go frickin' figure.

The great thing was Christian's PT came with me! Awesome because she's a professional and not some crazy mom trying to tell him what to do. And she also knows Dr. Death both personally and professionally. Go frickin' figure again!

She was a great intermediary. Little Lola came along, as well, and did her job of just being cute, thus softening up Mr. Crabby Patty. (He just keeps earning nickname after nickname! Any Spongebob followers out there?)

I explained to him why we were there since he hadn't seen Christian since September. I also explained I'd been seeing another neurologist. I got the feeling he was a little butt hurt that I had cheated on him with another nuero. He said, "I'm going to defer all of your questions back to Dr. Hendricks so what do you need me for?" Yeah, he said it just like that.

So I said, "We need Botox and I hear you're the man to do it."

He consulted with the PT and they discussed different areas where Christian might benefit from it's use. The PT suggested Christian's lower back to ease extension, but that didn't sit well with me because our goal right now is to strengthen his lower back and I didn't want to loose any ground. So I suggested that by loosening the adductors, perhaps that would loosen the back (which could happen because it's the spasticity in the legs that pulls on the back and spine). So I said that maybe we should just do the adductors for now and if in six months we haven't gained any ground with the back, we can then do the back. The PT and neuro surprisingly agreed.

The meeting was pretty painless, but I had to break the news to the HBOT center that I saw my ex (gasp!). When I brought up Botox before, they were leery of it and suggested I wait for more HBOT treatments. But if, in deed, Christian's hips are really at that much risk in such a short amount of time (which we'll know when we get our second opinion), it is my job as Christian's mom to do whatever it takes to make sure his body is okay. Whatever is in my power I'll do. If it means injecting poison into my son, as some people will see it, so be it. I know that sounds morbid and not that wonderful, but it could be wonderful for Christian. We have to do what we have to do and time doesn't seem to be on our side for this one.

And to tell you the truth, if someone said that a vial of poison would help my son and improve his quality of life, sign us up for the vial. Is that too honest? It's because I'd do anything to help my son and that is the honest truth.

Speaking of Crabby Patties, Christian has been one all week. I was thinking it was teething because he was getting so many teeth at once. And it takes longer for Christian's teeth to break through because he isn't gnawing on anything to help those gums. Other than the teething, I don't know what's bothering him. That's one of the hardest things, figuring out what's going on and fixing it.

Everyone please pray that my little Crabby Patty will feel better soon! And also please pray that the Botox will be beneficial to Christian.

Thanks...But No Thanks.

We visited the orthopedic surgeon yesterday.

That visit can be summed up with: Thanks, but no thanks.

The orthopedic surgeon reviewed Christian's x-rays of his hips and just as I suspected...no hip dislocation. But, he's at risk.

This is what I think about the statement of being "at risk:"

Christian, along with most special needs children is at risk for many things. He's at risk for getting lung infections and pneumonia, he's at risk for scoliosis, he's at risk of never talking, walking, or eating by mouth again. I believe he will do these things, but he's at risk for not doing these things if he doesn't get the therapies and treatments he needs to help him progress.

But this isn't really what we're centering his life around. He's at a higher risk for many things, but that isn't anything to start planning surgeries, cutting ligaments, and arranging for lower body casts.

Yes, I said surgeries, cutting, and body casts. In fact, it's not really what I said, it's what the surgeon said. He suggested cutting Christian's abductors which is the muscle on the inside of his thigh near his groin. He also said we should cut his Achilles tendon. And this will put him in a lower body cast for 4-6 weeks.

Ummm...I don't think so. All of this assessment was based on one appointment with Christian. He moved him around and, of course, Christian was resistant at first. But he has full range of motion and is able to move, get his legs in all different pretzel maneuvers, and his foot can go past 90 degrees while weight bearing. The PT didn't even think he needed Botox injections at this point. Does the surgeon see this? Nope. He sees an uncomfortable Christian after a 25 minute car ride, of which he despises, who doesn't move on command.

I kept wondering to myself...why does this man keep suggesting surgery? I am such a genius. DUH! He's a surgeon! This is what he does. He did say that the surgeries he's suggesting are preventative, rather than necessary at this moment.

So my thought is, again, thanks, but no thanks. We went to find out if his hips were dislocated, and they're not, just like I thought. If a surgery ever becomes necessary, that is when we'll do it. But for now there is more nonsurgical healing to do.

I've been stretching Christian and exercising him as we normally do. He's no longer in pain and he's back to normal. So the beat goes on.

ETA: It is Christian adductors that were suggested to be surgically cut. This is the muscle inside his thigh close to his groin. The doctor also suggested his heel cord which is in the area of the Achilles Tendon.