Christian's Journey

I've done a lot of writing about food and our issues with feeding Christian. I wanted to know the secret. I asked what the secret was to get Christian to hold down his food...for good.

Last week I was reading over my facebook news feed and I noticed the blended diet for tube fed children group I subscribe to posted the following:

"...Let's share what we know now that we wish we had known then about blending food."

My answer:

That is would work.

I will be the first to admit I jumped into the blended diet for Christian head first without knowing what I was doing. I told myself: What's the big deal? You feed your other kids! It's not rocket science! You know what you're doing, Woman!" And then I had to put it on repeat.

Finally we worked something out. But the vomiting didn't stop. We experimented with different foods, acid reflux medications, natural remedies...and still...vomiting.

It was so frustrating! It felt like a kick in the stomach every time it happened. And then my friend, Jen, also a blended-diet-tubie mommy, told me to stop the formula. She told me it would work. Just take it away.

But I only gave him a small amount. Surely that couldn't make that big of a difference. And she was basically asking me to jump in head first again. Formula was our anchor. If all else fails, use formula, right?

How could you even think that, Shauna?! You breastfed your children! Not a drop of formula! And now it's your best friend?! What is your deal?!

(I hope my talking to myself doesn't offend anyone who used formula for their kids, brian injured or otherwise. Obviously, it's not all bad, it's just not natural for me. Just me. Not speaking for anyone else, nor am I condemning anyone else. I'm really just speaking to the crutch I felt formula had become.)

Back to my friend, Jen. I trusted her. But I was wary of advice due to so much other advice working for other children. But not for Christian. A little jaded, I followed her advice anyway.

So we pulled all the formula. Even the little, tiny bit we were giving Christian over night. Another small leap, albeit head first, in the many leaps we've taken in this journey. But this leap was a good one.

A month later, Christian was just about vomit free. No acid reflux medication since about October. And hardly any vomiting. We've gotten a few episodes of spit up or coughing, but that really only happens when he is sick (hardly ever) and has too much phlegm going on in his upper airway or when he's pushing. You know, when he's going #2. Sometimes he pushes and things want to come out both ends!

It works. There is no secret. Wait, actually, the secret is food. If he is constipated, we use food as the remedy. His tummy is no longer upset. I don't have to cover him with two towels on our way to school so he doesn't throw up his breakfast all over his clothes.

And blendy blends? They're a piece of cake. Sometimes, literally. He has waffles, chicken soup, pumpkin, a variety of fruit, spinach, kale, macaroni and cheese, and even carne asada. It's fun! And it feels good to feed my son. Really good.

So I want to give a shout out to all of my friends and professionals who have supported the blended diet, offered advice, encouragement, suggestions, remedies, and recipes.


Head first. Leap of faith. And it works.

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.

I have a new motto for this year. It wasn't really a resolution because stating a resolution out loud is actually counterproductive to this year's motto.

LESS TALKING, MORE DOING.

Which leads me to ISR.

ISR stands for Infant Swim Resource (http://www.infantswim.com/). Lola has been participating in this program since she first learned to float at six months old. It was a gift. Lola has since learned to save herself should she ever fall in the water, no matter what barrier fails, no matter who's supervision she is under - I'm confident she can save herself because of ISR.

Last year, while at one of her lessons, I mentioned out loud - you know, that whole talking thing - that I wanted to help get ISR lessons for just one little boy. Not one in particular, just any two year old little boy. Two year old little boys are the largest demographic for childhood drownings. And Christian is a little boy, so, naturally, that is where my heart is.

Fast forward to this year, the year of less talking, more doing. With the impending heat of summer, I was trying to think of a way I could raise money to send at least one little boy to ISR. I thought of another online auction, bake sales, Scentsy fundraisers, Tupperware parties, I didn't know I just knew I wanted to stop talking about doing something and actually DO SOMETHING!

I also didn't know how to go about finding this little boy. I didn't want to violate any policies that ISR might have so I wrote them an email telling them about Christian and what I wanted to do.

Long story short, ISR presented us the opportunity to work with them and Crossfit Kids to make a video that will be on the ISR website, the Crossfit Kids website, and of course my little blog and anywhere else we want to put it. The video will be the fundraiser. The fundraiser will create scholarships for children to attend ISR sessions without cost being an issue. The video will be a tribute to Christian's life before and after his near drowning and it will also show Lola and her ISR skills!

Sterling's Story is an example of how the video will be done. I'm warning you now, if you watch it, you WILL need tissues.

This week has been kind of an out of body experience for me. I'm still soaking in the ripple effect this might have. My little goal was just to help one little boy, and now we have the possibility of helping more children.

So why do I feel compelled to do this? Among many other reasons of which I will elaborate in future posts, so many people have helped us along the way and I had no idea how I was going to pay them back. I'm even bad at thank you notes! But this? This is a way to pay it forward.

It's all part of that less talking, more doing thing.

We've been home for less than a week after our hospital stay and things have been pretty calm. The last night of our stay we decided to start a new drug called Clobazam The first night registered no seizures on the EEG, which was a big surprise to me! That's pretty much unheard of around these parts.

The first day he was on the medication he had a few seizures, maybe five or so. And that's been consistent every day since, but it's probably more like ten seizures a day. He seems to get them in clusters like his old seizures. It's funny because it almost seems like his old seizures have been replaced by these new tonic-clonic seizures. Or maybe they are the same seizures, they're just changing with time.

He is, however, not having seizures right after getting his evening medication dose. We give it to him in the evening because our primary issue right now is managing Christian's evenings. I've mentioned it several times that it is extremely difficult on all of us, including Christian, when he is inconsolable. Priority number one is getting that under control.

I'm happy to say that Clobazam has been successful in calming Christian in the evenings. It allows him to chill out and fall asleep. He has so far had easier days, less agitation, and an easier time relaxing. The best part about this is it hasn't really compromised his daytime manner. He doesn't seem any less alert or any more lethargic, which was a big concern of mine. He is, obviously, lethargic right after he gets the med but that may change, in fact all of this may change, as he gets used to the new medication. Hopefully, our new peaceful evenings won't change. We like those.

The prescription does call for us to increase the dose after a week to twice a day instead of once a day. I'm trying to figure that out because I don't want him lethargic and sleepy for school. Not sure how to proceed with that.

But for now, Christian seems a little more peaceful. And a little more vocal, interestingly enough. The seizures are secondary. If we can make sure he is comfortable and happy in the evenings, mission accomplished.

Now, shhhhh...babies are sleeping.


No, that's not a rug snuggled up to Christian. That's our dog, Ruby.

Blogging from hospital land tonight. We thought we might be able to bust out today, but, alas, we've decided to stay another twenty four hours.



It's definitely not that Christian didn't perform by showing off his seizure talents. Oh, he performed. I knew he would. These new seizures are hard and they happen about 10-15 times a day. They seem to get a little longer with each one. His face gets red and he starts breathing faster, as noted by the respiration alarm that goes off mid seizure after he exceeds the normal limit.

We got the results from the EEG over the last thirty six hours or so. I actually find them very interesting and very telling. So here goes.

He is experiencing classic tonic-clonic seizures. That's obvious by the looks of things. But, in addition, for the first time I got some further information about his EEG patterns. Christian's EEG is abnormal. I know this and I know that aside from Divine intervention, this will be his brain for the rest of his life. It just is. But what's fascinating is that he has slow brain waves, he gets a sharp spike at the onset of a seizure, then the waves go flat, then they enter into "normal" range while the seizure is still happening. After the seizure they settle back down into his regular abnormal, slow waves.

I've always kind of believed that seizures are the injured brain's way of trying to make connections and misfiring. During some of Christian's seizures, we've witnessed a clarity fall over him. I saw his first attempts at smiling during a short seizure. And during these new larger ones, he's been vocalizing, almost yelling through the duration of the seizure.

Now, neurologists may argue this means nothing other than that Christian has a severely abnormal brain pattern (not our neurologists, the one who read the EEG actually thought it was quite interesting). But I think this EEG just proves what we've thought all along - that some of these seizures are his brain's way of making connections, no matter how abnormally it's done.

Furthermore, and this is just a Momma's speculation, but I think the Ambien brought on these new, more intense seizures because it was too much for Christian's brain to handle. It was waking too much up at once maybe?

And then Christian's brain was like - I can't handle this! I'm wiggin' out, Bro!

And then Christian was all - Let's get it together, Brain. Not cool, Dude. Not cool.

This is what a hospitalization in isolation from my normal life does to me. I think Christian and his brain are having conversations.

Anyway, I'm so glad we have the team of neurologists and epileptologists working with us. They are so cool, so thorough, so accessible, so...un-neurologist like.

Despite these findings and our previous decision not to medicate, we are going to try Clobazam. These new seizures are just too hard on Christian and I fear they could get even more intense. I know when to fold. Besides that, we still need to address Christian's evening time freak outs. And we're hoping the Clobazam will kill two birds with one stone, being that it's in the Valium family. I'm hoping it will calm him, at the very least.

So here's to another day in the hospital! Yipeee! Momma, Christian, and Christian's brain signing off.