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!)
Showing posts with label HBOT. Show all posts
Showing posts with label HBOT. Show all posts
Sunday, December 18, 2011
Monday, November 28, 2011
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.
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.
Thursday, October 6, 2011
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?
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?
Monday, August 29, 2011
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!
Thursday, June 23, 2011
Feeding Him
I will readily admit that tube feeding is one of the subjects I know the least about.
When we left the hospital after Christian first had his feeding tube placed, we were just struggling to keep food in him. Nobody ever sat me down and instructed me on how exactly a feeding pump worked. They just sent us home and let us fly. I didn't even know what a bolus was or how to do it. I didn't know (and still kind of don't) about gravity feeds and I have no idea what three quarters of the functions on the feeding pump do. Up until recently, I didn't even know what the measurements on his Mic-key button meant.
What I do know is that as soon as formula was introduced in large quantities to my previously exclusively breastfed child, he threw up. And he threw up a lot. We had issues right away. In fact, Christian threw up every day, sometimes multiple times a day, for about eleven straight months. Over the last almost two years, we've fiddled and fumbled with rates and volumes until he wasn't throwing up as much. We also discovered Renitadine, an acid reflux medication that made a huge difference and pretty much stopped the vomiting right away for the most part. We still had spit ups but nothing near the projectile - four extra changes of clothes a day - kind of stuff.
I think it's fair to say that I've been half way winging it the entire time and any advise given on the subject I cling to, but, honestly, it's like someone speaking foreign language to me. I've been briefly instructed in it, I know it's important, but I vaguely understand it.
I had heard the phrase "blended diet" thrown around a couple times. And it really scared me. It sounded out of the question, unreachable, just too much to add to load.
But I always wondered - What would I feed him if he was just a normal three year old? Why can't I feed him that?
After our keto experience, the mixing, measuring, and weighing, I started thinking more about my son's diet. And again - why couldn't I just feed him what I was feeding Lola? Only blended and through a tube?
So I really wanted to make plans to start adding whole foods to Christian's diet after we were comfortably weaned off keto.
And you know things can never get complacent or boring around here, right?
I made the first blend and it was...dare I say...exciting? Yes! It's been exciting! And I thought it was going to be more difficult and more time consuming and it's turned out to be the opposite. It's actually fun to put meals together - I've added cheerios, mac and cheese...things I would feed him anyway.
Now just to throw another wrench into things, right before we tried blended food, Christian started throwing up again for no apparent reason. Couldn't figure it out. And, frankly, I was tired of figuring things out. So I gave him real food in a blender to see if he would hold it down because everything was coming up. And you know what - he did.
We've been taking it slow and we're still in transition but I really hope it works out. I feel more like I'm feeding my three year old rather than plugging him into his pump and walking away. I can't explain the feeling of finding a way to be his mommy that feels more natural and instinctive.
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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!
Thursday, June 9, 2011
Salted Caramel Gelato
I've been keeping something from you.
It's mainly because I was a little tired of complaining about the last six months. I was tired of the plans, the talking, the hemming and hawing. I wanted the "doing." I mean those who are close and in our day to day shuffle know so it's not like a secret or anything.
As of last weekend, Christian is no longer on the ketogenic diet. Over the last four weeks, we've slowly weaned back on to regular formula. Hopefully, soon, we'll be able to add some actual real live food to his diet. But now, baby steps.
The last six months have been very hard on Christian. The diet got off to a rocky start. It got better and then it got bad. Then better, then worse again. Christian had two upper respiratory infections where previously he had nothing but a sniffle. Christian lost three pounds, his coloring started to look off, and he was miserable. It became so that he was having more bad days than good. It became so that a good day was the exception not the rule.
That's never good.
He didn't move as much. He got really tight and couldn't relax. I went through every mental checklist I had and couldn't figure out what could be causing Christian so much discomfort.
One warm day a few months ago we were sitting outside of a gelato shop and all of us were getting down on our little cup of gelato, which was extra good because it was warm outside. Christian sat staring at us. I just had an inclination to give him some. The mini shovels used to scoop the gelato were perfect for tasting. So I gave him some. And his little mouth started fluttering. He also thought it was a good idea to get gelato that day.
That got us to thinking about this diet and what it was really doing for him. After all, salted caramel gelato isn't exactly keto friendly. Then I thought about his tasting and eating and how well he was doing with it before we had to take all the good stuff away. And then my stream of consciousness let me to thinking about Christian's experiences in life - what he'll be able to partake in. And I thought if he has limited abilities in life, is the ability to taste salted caramel gelato something I want him to miss out on?
This all seems really shallow, I know, especially considering that the keto diet is about seizure control. And seizure control trumps salted caramel gelato.It's a damn shame, but it does. But what if we weren't exactly getting seizure control?
It really wasn't about salted caramel gelato.
The whole point of the diet was to get some control over Christian's seizures. After Christian just seemed to be getting more and more unhappy, I started giving the diet serious thought. We messed around with ratios, we added special oil, we took it away, we did all we could to get some kind of change early on. And then recently, he wasn't moving as much, voluntarily or involuntarily. You don't appreciate involuntarily movement more than when there is no movement at all. He was tight, crooked, in pain.
I started that whole thinking thing again. I thought about whether things were better now with Christian than before we started the diet. And I couldn't remember. And if I couldn't remember, then it wasn't a significant enough change to keep him on such an unhealthy diet.
Don't get me wrong, the keto diet works wonders for some kids. And I believe in the beginning it had some affect on him. I'm so glad we tried it! If we hadn't, I'd have kicked myself and always wondered if we missed the boat. Now I know. We got on that boat and now it's time to get off. I knew it was an unhealthy diet going in. To tell you the truth, if wheat germ and coffee beans made my son's quality of life better, that's what he would get all day, every day! But it's just not the case, and it's not the case with the keto diet. It's costs versus benefits. And the costs were no longer worth it.
I can't say that I'm sad. I'm a little disappointed after all that build up and change over we didn't have better results. But I'm not sad about saying goodbye to that little scale, weighing, measuring, and mixing. And I'm not sad about saying goodbye to Christian's discomfort, constipation, irritability, weight loss, abdominal pain, and weakened immune system. And you know in this house, if something ain't workin' for Christian, we drop it like it's a bad habit. So the decision was made and we move forward.
The good news is that ever since transitioning Christian back to regular formula and bumping up his calories, he has started moving those arms again. He is sleeping through the night, he is content during the day (for the most part), he actually tolerates and may even enjoy his stander. Overall, he's just doing much better. His changed state of being is just confirmation that we made the right decision.
As a reward for making the right decision, we get a happier Christian and maybe some salted caramel gelato in our future.
Any excuse, right? ;-)
Christian and his girlfriend, Jada. He seems to light up everytime she's around him. And I love that she's loud and boisterous around him. She gets right in his face and isn't scared and I think he likes her high pitched Mini Mouse voice. When her mom told her to kiss him, she said, "Nooo! I can't kiss him...He's a boy!"
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!"
Friday, April 1, 2011
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'.
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'.
Sunday, January 2, 2011
2010: A Look Back
The first day of 2011 was like a "non-day." We didn't do anything but sit around watching toys pile up on the floor as Lola left a trail everywhere she wondered. It was one of those days where I got to sleep in really late and have chocolate cake for lunch. I didn't feel overwhelmed by the mess or the unproductiveness (if that's not a word I just made it one) of it all. It was a "non-day" with no purpose to it but just being. Being with each other as a family, being with the TV and it's movies we've already seen a hundred times and being with take out food and...chocolate cake. What a perfect way to start out the new year.
It's a far cry from what 2010 was. Yesterday I was thinking about it and wondering - What did we do last year?
Well...
In January we were doing HBOT, pretty much five days a week. Christian was pretty irritable at this time and cried a lot through the day until he fell asleep in the evening. We also started receiving durable medical equipment and therapy toys. We started considering Botox injections for tone and Christian started vision therapy with our awesome vision therapist.
February brought Christian's first chair, a false alarm with his hips, and an impromptu try out for a few days at NAPA therapy center in Los Angeles. That's when we got our first taste of what intensive therapy was like. It was also Christian's first trip to the ocean. [LOVE]
March was a big month for Christian. Christian started the month receiving his awesome quilt from the August Moms that hangs on the wall right now overlooking Christian and his little sister in their room. Every time I look at it I feel peace and love and it's like I'm looking at it for the first time. And then the BIGGEST news...after nine months Christian lost his trache tube! We met new super mommy friends and super kiddos in Denver and tried out ABM therapy. Christian also rolled from his side to his back for the first time and got his first haircut. We ended out the month with his first EEG to see what all those pesky jerks were.
In April we continued with another ABM intensive session closer to home in Phoenix and Christian was able to get in the pool for the first time since his stay in rehab. In April we finally got to the bottom of those jerks and unfortunately they were seizures - infantile spasms to be exact. We started our trial with Vigabatrin (Sabril) to hopefully rid Christian of these horrible nuisances.
May brought Mother's Day and Mexico! We had an amazing family vacation to Mexico where we put Christian's feet in the sand and soaked up the sun. Christian was so relaxed and it was then we knew for sure our boy was a beach bum.
In June, Gabe and I learned CPR, which was something very important for both of us to do as part of our healing. We also spent a week at NAPA therapy center, which was awesome! Seizures also returned and it was at this time we were wondering what to do next. Despite his seizures and irritability being at it's worst this month, Christian miraculously passed his swallow study! We press on tasting and eating by mouth!
July was a biggie because it was the one year anniversary of Christian's accident. It wasn't heavy, though. We were surrounded in love both near and far. We also attempted a few other things for seizure control but they made things worse. Fortunately, we were able to move past those options quickly. Lola also started ISR, which is an infant swimming rescue program. At this point Christian's tone and extension greatly improved and he stopped throwing up after almost a year of constant vomiting every day.
Christian turned two years old in August! We also made plans to go to Euro-Peds and Christian continued to be vomit free! He even started gaining a little extra!
Between August and September we held our 2nd online auction and 1st Panda Express Fundraiser. We also went to Michigan to do a two week therapy trip at Euro-Peds! It was a great trip and further strengthened our belief in intensive physical therapy. It was during this month that I finally made the decision that we would give the ketogenic diet a try.
October and fall brought pumpkins, Halloween, and a new realization that we might need to try one thing at a time. This was particularly difficult seeing as how I'm a multitasker! However, we started gearing up for the ketogenic diet and slowing down with everything else.
In November, while waiting to begin the ketogenic diet, we spent some time with our new friends on play dates to the park and to the zoo. More head control and weight bearing returned after a few months of Christian being a noodle. Christian also got a new bed from Daddy and a new light box from his vision therapist.
In December we finally started the ketogenic diet. It was tough and still continues to be, actually increasing seizure activity rather than decreasing it like we expected. As of now the jury is still out. But a very high point of December - Christian's "first" picture with Santa and Mrs. Claus.
..........
Okay, I needed that.
I was kind of dreading the recap, but I felt like it was my blogger duty to do it. So I reluctantly sat down at the computer and scanned through all of the 2010 blogs and it was very evident that we, in deed, did make some progress.
It's hard to see and realize progress when you come out of a tough month. And I will fully admit that December, out of all months, has been our toughest by far. Despite our setbacks, Christian has come so far! No trache, no throwing up, more movements, passing swallow study, reaching...did I mention no vomiting? That has made life so much easier.
As for what we have planned in the coming year...tweaking the keto diet, we have a new specialist on board with some new possibilities, a trial study for treating tone without medication, we might possibly visit the cranial sacral doctor again, and we will be doing more HBOT. I'd also like to make more plans for another round or two of intensive therapy and there are a few more things up in the air. You never know! Most of last year's trips were planned with about six weeks notice. I'm impulsive like that. Or maybe it's not being impulsive, but rather just noticing when doors (and windows) are open. And then I immediately make plans to jump through them and quickly.
And those "non-days," I'm hoping to have more of those. Because what they really are, are days full of meaning and just being present with my family.
There is something about the New Year that signifies so many new possibilities and hope. And despite my weariness, I still have hope for my son.
Dum spiro spero.
It's a far cry from what 2010 was. Yesterday I was thinking about it and wondering - What did we do last year?
Well...
In January we were doing HBOT, pretty much five days a week. Christian was pretty irritable at this time and cried a lot through the day until he fell asleep in the evening. We also started receiving durable medical equipment and therapy toys. We started considering Botox injections for tone and Christian started vision therapy with our awesome vision therapist.
February brought Christian's first chair, a false alarm with his hips, and an impromptu try out for a few days at NAPA therapy center in Los Angeles. That's when we got our first taste of what intensive therapy was like. It was also Christian's first trip to the ocean. [LOVE]
March was a big month for Christian. Christian started the month receiving his awesome quilt from the August Moms that hangs on the wall right now overlooking Christian and his little sister in their room. Every time I look at it I feel peace and love and it's like I'm looking at it for the first time. And then the BIGGEST news...after nine months Christian lost his trache tube! We met new super mommy friends and super kiddos in Denver and tried out ABM therapy. Christian also rolled from his side to his back for the first time and got his first haircut. We ended out the month with his first EEG to see what all those pesky jerks were.
In April we continued with another ABM intensive session closer to home in Phoenix and Christian was able to get in the pool for the first time since his stay in rehab. In April we finally got to the bottom of those jerks and unfortunately they were seizures - infantile spasms to be exact. We started our trial with Vigabatrin (Sabril) to hopefully rid Christian of these horrible nuisances.
May brought Mother's Day and Mexico! We had an amazing family vacation to Mexico where we put Christian's feet in the sand and soaked up the sun. Christian was so relaxed and it was then we knew for sure our boy was a beach bum.
In June, Gabe and I learned CPR, which was something very important for both of us to do as part of our healing. We also spent a week at NAPA therapy center, which was awesome! Seizures also returned and it was at this time we were wondering what to do next. Despite his seizures and irritability being at it's worst this month, Christian miraculously passed his swallow study! We press on tasting and eating by mouth!
July was a biggie because it was the one year anniversary of Christian's accident. It wasn't heavy, though. We were surrounded in love both near and far. We also attempted a few other things for seizure control but they made things worse. Fortunately, we were able to move past those options quickly. Lola also started ISR, which is an infant swimming rescue program. At this point Christian's tone and extension greatly improved and he stopped throwing up after almost a year of constant vomiting every day.
Christian turned two years old in August! We also made plans to go to Euro-Peds and Christian continued to be vomit free! He even started gaining a little extra!
Between August and September we held our 2nd online auction and 1st Panda Express Fundraiser. We also went to Michigan to do a two week therapy trip at Euro-Peds! It was a great trip and further strengthened our belief in intensive physical therapy. It was during this month that I finally made the decision that we would give the ketogenic diet a try.
October and fall brought pumpkins, Halloween, and a new realization that we might need to try one thing at a time. This was particularly difficult seeing as how I'm a multitasker! However, we started gearing up for the ketogenic diet and slowing down with everything else.
In November, while waiting to begin the ketogenic diet, we spent some time with our new friends on play dates to the park and to the zoo. More head control and weight bearing returned after a few months of Christian being a noodle. Christian also got a new bed from Daddy and a new light box from his vision therapist.
In December we finally started the ketogenic diet. It was tough and still continues to be, actually increasing seizure activity rather than decreasing it like we expected. As of now the jury is still out. But a very high point of December - Christian's "first" picture with Santa and Mrs. Claus.
..........
Okay, I needed that.
I was kind of dreading the recap, but I felt like it was my blogger duty to do it. So I reluctantly sat down at the computer and scanned through all of the 2010 blogs and it was very evident that we, in deed, did make some progress.
It's hard to see and realize progress when you come out of a tough month. And I will fully admit that December, out of all months, has been our toughest by far. Despite our setbacks, Christian has come so far! No trache, no throwing up, more movements, passing swallow study, reaching...did I mention no vomiting? That has made life so much easier.
As for what we have planned in the coming year...tweaking the keto diet, we have a new specialist on board with some new possibilities, a trial study for treating tone without medication, we might possibly visit the cranial sacral doctor again, and we will be doing more HBOT. I'd also like to make more plans for another round or two of intensive therapy and there are a few more things up in the air. You never know! Most of last year's trips were planned with about six weeks notice. I'm impulsive like that. Or maybe it's not being impulsive, but rather just noticing when doors (and windows) are open. And then I immediately make plans to jump through them and quickly.
And those "non-days," I'm hoping to have more of those. Because what they really are, are days full of meaning and just being present with my family.
There is something about the New Year that signifies so many new possibilities and hope. And despite my weariness, I still have hope for my son.
Dum spiro spero.
Monday, December 20, 2010
Whip Cream and Gravy, Baby
I like gravy. I also kind of like the whip cream on top of my yummy coffee drinks. But usually I forgo the whip cream on my Starbucks Frappuccinos. Maybe I should rethink this.
It's been two weeks (yes, two weeks already) since the start of the Keto diet.
And what an emotional roller coaster it has been.
Mostly because I was warned of the sleepiness and of the possibility of Christian being lethargic, which honestly isn't much of a leap from how he is usually, so I was prepared.
What I wasn't prepared for was an increase in seizures. When you have a lot of eggs in one basket, as one friend put it, it's such an emotional blow to see the opposite happen of what you so hoped and planned for.
As I mentioned in the last blog, I've found out that increased seizures actually wasn't that uncommon. And I finally emailed the dietitian. She reiterated that it's ONLY BEEN TWO WEEKS and it's not enough time to even make adjustments to the diet. She also mentioned that she had a patient that took six months to get optimal seizure control. This is also something I've read can happen, too.
Long story short...BE PATIENT, SHAUNA!!!
I mean, in my defense, it is so hard to see more seizures, which is exactly the opposite of what we planned for. Over the last two weeks there have been a few talks with God, second guessing, researching, more second guessing, and praying and praying and praying. I finally reached my breaking point when I heard a little voice in my head. I think it's God, but maybe it's one of my multiple personalities. If so, this personality is the smart one.
I was very upset and emotional when I heard this voice say - Accept what is and be thankful for anything given on top of that.
What does this mean? It means accept what I prayed for in the beginning and that was to have Christian with us, no matter what his limitations. This is what I begged for. So accept the present and be thankful for the gravy, the whip cream, and cherry on top.
We have what is good in front of us. Everyone likes mashed potatoes, right? Well, the gravy on top is what makes it extra delicious.
Everyone likes Starbucks, for the most part (and if you don't, I'm very sorry for you). And it's the whip cream on top that makes it that much more decadent.
This is my analogy of the week...Christian is my mashed potatoes. Whatever is given to us in the form of abilities is just gravy, baby.
Why am I comparing my son to mashed potatoes and Starbucks drinks, other than the fact that he is so warm and mushy and sweet I could just eat him up? Because as soon as that little voice put things into perspective for me, my week or so long downer mood flipped a 180. It was as if someone turned on a light switch and it was all better. I could see clearly again.
And I'm sure you're thinking, "Okay, Shauna, that's nice and cute with your food analogies but how's Christian?"
Well, yesterday I think a little light switch of his own turned on. I think he actively looked at the Christmas lights for the first time this season. He's moving a little more but let's go back to the looking. He was actually looking. I would talk to him on one side and his eyes would move to where I was. It worked on the other side. This is after a few weeks of very little active looking and a lot of his head stuck to the left. He followed his silver space blanket right away and I couldn't have been more pleased with my whip cream.
And this space blanket thing is so awesome and so big, you can prop it and make cool space forts out of it! This was pretty much ideal because it closed out most of the light, which is easier on Christian's eyes and he stared, wide eyes, at his favorite sensory toy. If you're a special needs parent, go buy one NOW! About $3 in the camping section at Walmart. Tell your friends.
I'm hoping, praying, hoping, praying, this light switch I think I saw is the beginning of something. That would seriously be just gravy, baby.
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.
Sunday, December 5, 2010
Keto-fied
Getting Keto-fied!
It's not as easy as one might think. Although, I'm not sure anyone who knows anything about the Ketogenic diet (from now on I'll be referring to as the Keto diet because it's just shorter to say and type out) would associate it with easy.
I'm getting more and more familiar with the "naughty" list. This is the list of ingredients that appear in lotions, soaps, ointments, and toothpastes that are no-no's for the keto diet.
Oh yeah, if I hadn't mentioned, the shipment came! The keto formula (Keto-Cal liquid, 4:1 ratio) arrived on Friday. I had never been so excited to see a health care shipment. When the delivery guy asked if he could bring in the boxes for me, I excitedly obliged. I was close to being ecstatic. He probably thought I was a little hopped up on candy canes but whatever. This is so different from our usual shipment. In fact, I'm fine not even answering the door and having the guy leave everything outside with past shipments. The formula is heavy, I have to put stuff away, boxes have to be disposed of, it's a pain. But this time...this time I was ready! I even wished the delivery guy a Merry Christmas and gave him a candy cane. Just kidding. But I did wish him a Merry Christmas.
All this excitement and you'd think Christian would start right away. Not quite.
He has to be eased into his new food. He's been on an elemental formula for a while now, over a year, in fact. So he can't just switch over night unless we are ready for bad reactions. So we have to transition Christian with a schedule that goes like this:
Day 1: 25% Old Formula/75% Keto-cal
Day 2: 50% Old Formula/50% Keto-cal
Day 3: 75% Old Formula/25% Keto-cal
Day 4: 100% Keto-cal
That's actually a pretty quick transition in the tube fed diet world.
And it's a lot of math and a lot of calculations with calories and high concentrations and extra water and...oh, it's all fascinating stuff.
Point being...drum roll please....tomorrow is day 4. 100% baby.
Some of the initial side effects of going on the diet are sleepiness and lethargy for the first few weeks as the brain begins to learn to pull energy from fat instead of carbs and sugar. There may also be some throwing up. We prepared for this by increasing his acid reflux medication. We haven't had any issues so far so we'll see when he goes full throttle.
We also have to test his urine for Ketones using Ketone strips. That's a little difficult. We just put cotton balls in his diaper but we have to be sure to get the soaked cotton balls before the absorbency chemicals from the diaper take everything. I just gave up until he's on Keto-cal 100%. No use because his ketones were negative, negative, negative.
So exciting stuff around here. Actually, besides my encounter with the delivery guy, it's been pretty calm. We stayed home pretty much all weekend, which is a good thing because we have some busy weekends in our near future including little sister's very first birthday party next weekend!
Now in thinking about everything I started getting ahead of myself and remember how much I loved November and my promise not to ask for things. It really took a lot of pressure off expectation. I was just thankful. No reason I have to stop just because it's December, right? So I'm going to continue being thankful because it makes me a lot more appreciative and helps me focus.
That being said, I'm thankful for the opportunity to try this diet for Christian and that we've been able to work with very capable and experienced doctors in order to administer this whole thing. I'm also thankful this ALL can be done from the comfort of our own home. Christian is appreciative of that, I'm sure of it.
As a side note, I'm also thankful for the local radio station that plays 24 hour Christmas music and if you haven't seen my facebook status, I'm very thankful for the Starbucks Caramel Brulee Frappuccino. Pretty sure if I was on the Keto diet, it would be on the naughty list.
It's not as easy as one might think. Although, I'm not sure anyone who knows anything about the Ketogenic diet (from now on I'll be referring to as the Keto diet because it's just shorter to say and type out) would associate it with easy.
I'm getting more and more familiar with the "naughty" list. This is the list of ingredients that appear in lotions, soaps, ointments, and toothpastes that are no-no's for the keto diet.
Oh yeah, if I hadn't mentioned, the shipment came! The keto formula (Keto-Cal liquid, 4:1 ratio) arrived on Friday. I had never been so excited to see a health care shipment. When the delivery guy asked if he could bring in the boxes for me, I excitedly obliged. I was close to being ecstatic. He probably thought I was a little hopped up on candy canes but whatever. This is so different from our usual shipment. In fact, I'm fine not even answering the door and having the guy leave everything outside with past shipments. The formula is heavy, I have to put stuff away, boxes have to be disposed of, it's a pain. But this time...this time I was ready! I even wished the delivery guy a Merry Christmas and gave him a candy cane. Just kidding. But I did wish him a Merry Christmas.
All this excitement and you'd think Christian would start right away. Not quite.
He has to be eased into his new food. He's been on an elemental formula for a while now, over a year, in fact. So he can't just switch over night unless we are ready for bad reactions. So we have to transition Christian with a schedule that goes like this:
Day 1: 25% Old Formula/75% Keto-cal
Day 2: 50% Old Formula/50% Keto-cal
Day 3: 75% Old Formula/25% Keto-cal
Day 4: 100% Keto-cal
That's actually a pretty quick transition in the tube fed diet world.
And it's a lot of math and a lot of calculations with calories and high concentrations and extra water and...oh, it's all fascinating stuff.
Point being...drum roll please....tomorrow is day 4. 100% baby.
Some of the initial side effects of going on the diet are sleepiness and lethargy for the first few weeks as the brain begins to learn to pull energy from fat instead of carbs and sugar. There may also be some throwing up. We prepared for this by increasing his acid reflux medication. We haven't had any issues so far so we'll see when he goes full throttle.
We also have to test his urine for Ketones using Ketone strips. That's a little difficult. We just put cotton balls in his diaper but we have to be sure to get the soaked cotton balls before the absorbency chemicals from the diaper take everything. I just gave up until he's on Keto-cal 100%. No use because his ketones were negative, negative, negative.
So exciting stuff around here. Actually, besides my encounter with the delivery guy, it's been pretty calm. We stayed home pretty much all weekend, which is a good thing because we have some busy weekends in our near future including little sister's very first birthday party next weekend!
Now in thinking about everything I started getting ahead of myself and remember how much I loved November and my promise not to ask for things. It really took a lot of pressure off expectation. I was just thankful. No reason I have to stop just because it's December, right? So I'm going to continue being thankful because it makes me a lot more appreciative and helps me focus.
That being said, I'm thankful for the opportunity to try this diet for Christian and that we've been able to work with very capable and experienced doctors in order to administer this whole thing. I'm also thankful this ALL can be done from the comfort of our own home. Christian is appreciative of that, I'm sure of it.
As a side note, I'm also thankful for the local radio station that plays 24 hour Christmas music and if you haven't seen my facebook status, I'm very thankful for the Starbucks Caramel Brulee Frappuccino. Pretty sure if I was on the Keto diet, it would be on the naughty list.
Thursday, November 11, 2010
Tales of a Giant Toddler
See the picture below?
I have a giant baby. Well, I guess he's a giant toddler now. I was trying to take a picture of his new boots because it got just a tiny bit cool in the air so we decided it was time for boots!
But, alas, my child is just too big and I am just not talented enough to take a picture and hold this giant child at the same time. So no picture of the boots. But, instead, I got a picture of a child that seems half my size. Yowza! And I not-so-secretly love this picture because look how relaxed he is! No arching, no extension! It's given us some problems with head control BUT (and this is a nice "but") it allows for some very comfy snuggling time.
So guess what the giant toddler got today...a light box!
What's a light box, you ask? It's a big box that illuminates while different shapes and colors are placed on it and light shines through. This allows Christian to use his vision to see shapes and colors using contrasting light. Our wonderful vision therapist from ASDB brought this toy for us to play with for a while.
Look, Lola helping Christian understand just how it works. Such a good little helper!
Another great sensory toy that I've known about for a while is the space blanket! No, Christian isn't cold. This is a regular camping blanket sold at Walmart for just over $2. It's huge and it's such a great sensory tool. Christian can touch it, pull it, hear it, and see it. Every time he moves underneath it, he gets some kind of feedback and/or sensory input. I put the blanket on him to get him going and it works every time. He can't resist the space blanket!
And what do giant babies that turn into giant toddlers get to sleep in? A crib? No way! Not anymore! The giant toddler gets a big boy bed! And not just any big boy bed. No. This bed is actually specially made for Christian by his awesome daddy. He built the frame tall enough so that lifting the giant toddler wouldn't be hard on our backs. The base was welded together and painted and allows enough storage for our home hyperbarics chamber. It looks small because it's deflated, but when it's inflated it's bigger. We'll use underneath the bed to store it and roll it out for HBOT sessions (which will be starting again soon).
This giant boy is definitely a lucky boy. I've been noticing some good things lately. Christian now has very different cries. Without looking at him I know his tired cry. He has a different cry for when he's hurt, he has a whimper that sounds like a puppy, and he also whines until he's held. Then he miraculously stops crying when he's being held. Hmmmm. I think he's playing us. He seems to be able to tell us every "no" emotion in every which way. Now if we could just get him to work on the "yes"...
So the giant toddler has a big boy bed to sleep in and he's already ahead of the game tonight as he's off in dream land. During sleep he's been moving a lot, which is interesting. While he's sleeping he can roll from his back to side and back again, he stretches his arms above his head, and sometimes he's found in different positions then where I left him. Can we please do this while we're awake, Christian?
New bed to sleep in, new light box to play with, sensory stimulation from the space blanket...all the makings of a very tired and very beautiful giant toddler.
(He's still my giant baby, but don't tell him I called him that, okay?)
Look at those big boy kissy lips!
Saturday, October 23, 2010
A NEW Fix
I love new things, but I haven't had many new things to report lately. Things are kind of in process right now.
I mean really we're just busy living life and planning stuff and in the middle of future goals and same ol', same ol' there's this weird in limbo land that we're living in right now.
As far as Christian goes, we were scheduled to begin HBOT when we got back from Michigan, but after discussing it and thinking it over, we decided to hold off. I'm really, really trying to zero in on one thing at a time because this throwing stuff to a wall to see what sticks is driving me crazy. I never really know what's sticking!
Our focus right now is the ketogenic diet. We're trying to get through all of the red-tapiness of it, getting records sent over from one office to another, getting in with the right doctor, scheduling a consult with the only scheduler for a pediatric neurology practice that spans two hospitals and like six doctors. So, it's been a lesson in patience but we're almost there. Just waiting for the date for the neuro consult. But what I'm a little excited about is that we may even be scheduled with either an epileptologist or a brain injury specialist. That's a little awesome, I think. Oh yeah, we have to schedule a consult in order to work with the dietitian who will help us with the diet. Next stop, an actual appointment.
That being said, we want to see if this diet is successful without any other variables like HBOT or different therapies or vitamins. So we're staying with status quo, adding the diet, evaluating the effect, possibly weaning him off the Sabril (Vigabatrin), and then we'll probably start with our mild home HBOT chamber and then add hard chamber treatments.
As for Christian - not a whole lot that's "new." That's not entirely true. He's moving a lot more than he ever has. He's moving his legs and his arms and reaching for toys and all that jazz, even more so than he's ever done in the last year and change. BUT his head control has gone funky. I'm really not sure what all that's about. He throws it forward and can move it from throwing it back to bringing it forward, but he's just not interested in holding his head up with any sort of consistency anymore. Maybe he's just saving up to show us something bigger.
So because we're in limbo and waiting for some things to happen, and there aren't any terribly new things going on (yet), here are some other NEW things...
I mean really we're just busy living life and planning stuff and in the middle of future goals and same ol', same ol' there's this weird in limbo land that we're living in right now.
As far as Christian goes, we were scheduled to begin HBOT when we got back from Michigan, but after discussing it and thinking it over, we decided to hold off. I'm really, really trying to zero in on one thing at a time because this throwing stuff to a wall to see what sticks is driving me crazy. I never really know what's sticking!
Our focus right now is the ketogenic diet. We're trying to get through all of the red-tapiness of it, getting records sent over from one office to another, getting in with the right doctor, scheduling a consult with the only scheduler for a pediatric neurology practice that spans two hospitals and like six doctors. So, it's been a lesson in patience but we're almost there. Just waiting for the date for the neuro consult. But what I'm a little excited about is that we may even be scheduled with either an epileptologist or a brain injury specialist. That's a little awesome, I think. Oh yeah, we have to schedule a consult in order to work with the dietitian who will help us with the diet. Next stop, an actual appointment.
That being said, we want to see if this diet is successful without any other variables like HBOT or different therapies or vitamins. So we're staying with status quo, adding the diet, evaluating the effect, possibly weaning him off the Sabril (Vigabatrin), and then we'll probably start with our mild home HBOT chamber and then add hard chamber treatments.
As for Christian - not a whole lot that's "new." That's not entirely true. He's moving a lot more than he ever has. He's moving his legs and his arms and reaching for toys and all that jazz, even more so than he's ever done in the last year and change. BUT his head control has gone funky. I'm really not sure what all that's about. He throws it forward and can move it from throwing it back to bringing it forward, but he's just not interested in holding his head up with any sort of consistency anymore. Maybe he's just saving up to show us something bigger.
So because we're in limbo and waiting for some things to happen, and there aren't any terribly new things going on (yet), here are some other NEW things...
We went for a morning walk for the first time this fall in our NEW double stroller, jammies, and blankets this morning.
I'm slowly, but surely putting the kids' room together and the theme is Dr. Seuss, as I've mentioned before. So I ordered these NEW giant wall decals for the room and they came today! And just to show you how big they are, I let Lola crawl all over them so I could take a picture and show how giant these decals really are.
Along with the wall decals, we received Christian's NEW Halloween costume. He'll be moonlighting as Frankenstein this year.
"IT'S ALIVE!!!"
So there are some NEW things to hold me over until some other NEWER things start happening.
Tuesday, August 24, 2010
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!
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!
Thursday, August 12, 2010
Just Being
It's been slow around our house lately.
On purpose.
We're on an HBOT break and I've been making it a point to keep our appointments to a minimum.
This gives us back some normal. It gives us back some breathing time. It's good for the kids and it's good for me because it really allows me to be the stay at home mom I want to be.
An appointment isn't just an appointment. It's an hour of preparation, getting everyone out of the house, maybe finding a sitter, a 20-30 minute drive there and then again back home. It's unloading the car and loading it back up again.
All this in 100 degree weather makes for very red cheeks for Christian and an even more exhausted Mama.
So I put a stop to it.
There was a time when Christian had multiple appointments every single day of the week. I cannot say that Christian was any "better" because of that. In fact, I can say with some certainty that he's a lot better hanging at home. He gets his hour in his stander, he flails his arms while on his back, he practices eating with his little sister, sometimes he watches cartoons and sometimes I roll him back and forth across the carpeted floor. All of this is done uninterrupted and in no hurry because we don't have anywhere to be.
Of course, we have the regular PT and OT and they come to our house. And anything necessary like orthopedic and pediatric appointments are scheduled regularly. But we aren't adding anything right now. We're just...being.
Oh, as we are being, we also got a minivan. With a lot of help from those around us, we were finally ready to make the dive. I finally conceded when I realized that Christian just didn't have enough leg room in our truck and getting that beast of a stroller out of the back of a truck was years of chiropractic visits in the making.
We have a new member of the family - it's a 2004 Dodge Grand Caravan. Welcome to the family.
I make fun of it because I feel solidly like a suburbanite, mom of three, who's soon to turn 30...and now I drive a minivan...I feel like I'm straight out of a first edition Cliche for Dummies.
But there's something deeper. It's also another underlying milestone in the our special needs world. It's the purchase you make for "convenience" but really it's a necessity and will become even more so as time goes on. Minivans, even conversion vans, are part of our life and may be for a very long time.
"We need it for more room." - We say.
Really, we need it for Christian's stroller, and maybe someday we might need it for his wheelchair. Or maybe not. Who knows?
Anyway, the new family member is here to stay. I love it. Really, I do. Anything that makes life a little easier is something to make a big deal about. And this new family member is making life really sweet right now.
So, Yay for the minivan! Yay for less appointments! And, Yay for just being.
On purpose.
We're on an HBOT break and I've been making it a point to keep our appointments to a minimum.
This gives us back some normal. It gives us back some breathing time. It's good for the kids and it's good for me because it really allows me to be the stay at home mom I want to be.
An appointment isn't just an appointment. It's an hour of preparation, getting everyone out of the house, maybe finding a sitter, a 20-30 minute drive there and then again back home. It's unloading the car and loading it back up again.
All this in 100 degree weather makes for very red cheeks for Christian and an even more exhausted Mama.
So I put a stop to it.
There was a time when Christian had multiple appointments every single day of the week. I cannot say that Christian was any "better" because of that. In fact, I can say with some certainty that he's a lot better hanging at home. He gets his hour in his stander, he flails his arms while on his back, he practices eating with his little sister, sometimes he watches cartoons and sometimes I roll him back and forth across the carpeted floor. All of this is done uninterrupted and in no hurry because we don't have anywhere to be.
Of course, we have the regular PT and OT and they come to our house. And anything necessary like orthopedic and pediatric appointments are scheduled regularly. But we aren't adding anything right now. We're just...being.
Oh, as we are being, we also got a minivan. With a lot of help from those around us, we were finally ready to make the dive. I finally conceded when I realized that Christian just didn't have enough leg room in our truck and getting that beast of a stroller out of the back of a truck was years of chiropractic visits in the making.
We have a new member of the family - it's a 2004 Dodge Grand Caravan. Welcome to the family.
I make fun of it because I feel solidly like a suburbanite, mom of three, who's soon to turn 30...and now I drive a minivan...I feel like I'm straight out of a first edition Cliche for Dummies.
But there's something deeper. It's also another underlying milestone in the our special needs world. It's the purchase you make for "convenience" but really it's a necessity and will become even more so as time goes on. Minivans, even conversion vans, are part of our life and may be for a very long time.
"We need it for more room." - We say.
Really, we need it for Christian's stroller, and maybe someday we might need it for his wheelchair. Or maybe not. Who knows?
Anyway, the new family member is here to stay. I love it. Really, I do. Anything that makes life a little easier is something to make a big deal about. And this new family member is making life really sweet right now.
So, Yay for the minivan! Yay for less appointments! And, Yay for just being.
Saturday, August 7, 2010
Float
I've been waiting (and waiting and waiting) to post about ISR, or Infant Swim Resource.
First let me explain the sequence of events that led us to ISR.
Prior to Christian's accident I had thought about getting him swim lessons. I had heard about babies being able to swim even before turning one year old.
Then at the end of last year, about five months after the accident right around the time Lola was born I received an email from an ISR instructor who, along with all the other ISR instructors in Tucson, offered to donate ISR services to Lola. The instructor was sensitive in her offering and I could tell she was a little nervous about approaching me, not knowing how I would react to the offer.
I couldn't be more grateful. This is why:
You all know where I'm coming from, right? Especially if you've been following us since the beginning. Along the path of this journey I have met many families that have experienced near drownings under the care of others, under their own care, with fences, without fences, with fences that knocked over, with block walls, with gates that were pushed open by a family pet, the list goes on. So I wasn't about to stand up and give all credence to barrier protection, because although it can prevent a drowning, barrier protection can fail.
But I can say that I truly believe in ISR. It helps an infant use instinctual movements to learn how to float. It is literally a life saving program. I believe in this program because even if supervision fails, even if a physical barrier fails, this is a skill a child has when all else fails. The ISR program actually has a 100% success rate. That's right, 100%. I could go on and on but you can check out ISR by clicking here. I don't like to play the what if game but I can say with confidence that if Christian had these skills before the accident, I can't help but think things would have been different.
The first day we arrived at our instructor, Pam's, pool, I was a little disheveled, a little disorganized, probably late - pretty much how the chips usually fall. I was a little nervous about the whole thing, but I think Pam was more nervous than I was. Lola cried, she screamed, actually. But it really only took one lesson to appreciate the process. Some parents are afraid of crying, but I'm not one of those parents. Ever since we went without Christian crying, or even vocalizing, for months, I have an appreciation for it. And Lola, well she takes the cake when it comes to hysterics so I'm already well broken in.
And, you know, the thing is that a crying child isn't a drowning child. It's plain and simple. When children are drowning they don't cry. So if your child is crying and floating in a situation where they've fallen into water, it's a good thing. I say bring on the crying, I wanna hear more of it.
Others are concerned that it may be traumatizing to the infants to go through such an intense program. To that I would ask - You know what's even more traumatizing? Drowning.
And you know what? Lola did scream. But with each lesson there was more confidence, less crying, more floating, and even some Look Mom! I can do it! smiles.
It was a beautiful gift that ISR instructor offered us from the Tucson ISR team. Pam and Tracy, I consider you great friends of ours and a profound piece of this journey.
Okay, I'll stop gushing.
I'm still waiting on video approval and it will be great because I have video from when she first started until now and it's really amazing.
For now, here are some pictures of Lola - my little floater!
Doing it for brother and totally worth it.
First let me explain the sequence of events that led us to ISR.
Prior to Christian's accident I had thought about getting him swim lessons. I had heard about babies being able to swim even before turning one year old.
Then at the end of last year, about five months after the accident right around the time Lola was born I received an email from an ISR instructor who, along with all the other ISR instructors in Tucson, offered to donate ISR services to Lola. The instructor was sensitive in her offering and I could tell she was a little nervous about approaching me, not knowing how I would react to the offer.
I couldn't be more grateful. This is why:
You all know where I'm coming from, right? Especially if you've been following us since the beginning. Along the path of this journey I have met many families that have experienced near drownings under the care of others, under their own care, with fences, without fences, with fences that knocked over, with block walls, with gates that were pushed open by a family pet, the list goes on. So I wasn't about to stand up and give all credence to barrier protection, because although it can prevent a drowning, barrier protection can fail.
But I can say that I truly believe in ISR. It helps an infant use instinctual movements to learn how to float. It is literally a life saving program. I believe in this program because even if supervision fails, even if a physical barrier fails, this is a skill a child has when all else fails. The ISR program actually has a 100% success rate. That's right, 100%. I could go on and on but you can check out ISR by clicking here. I don't like to play the what if game but I can say with confidence that if Christian had these skills before the accident, I can't help but think things would have been different.
The first day we arrived at our instructor, Pam's, pool, I was a little disheveled, a little disorganized, probably late - pretty much how the chips usually fall. I was a little nervous about the whole thing, but I think Pam was more nervous than I was. Lola cried, she screamed, actually. But it really only took one lesson to appreciate the process. Some parents are afraid of crying, but I'm not one of those parents. Ever since we went without Christian crying, or even vocalizing, for months, I have an appreciation for it. And Lola, well she takes the cake when it comes to hysterics so I'm already well broken in.
And, you know, the thing is that a crying child isn't a drowning child. It's plain and simple. When children are drowning they don't cry. So if your child is crying and floating in a situation where they've fallen into water, it's a good thing. I say bring on the crying, I wanna hear more of it.
Others are concerned that it may be traumatizing to the infants to go through such an intense program. To that I would ask - You know what's even more traumatizing? Drowning.
And you know what? Lola did scream. But with each lesson there was more confidence, less crying, more floating, and even some Look Mom! I can do it! smiles.
It was a beautiful gift that ISR instructor offered us from the Tucson ISR team. Pam and Tracy, I consider you great friends of ours and a profound piece of this journey.
Okay, I'll stop gushing.
I'm still waiting on video approval and it will be great because I have video from when she first started until now and it's really amazing.
For now, here are some pictures of Lola - my little floater!
Trying to smile and float at the same time.
Floating on her own.
"I can do it, Mom!"
It's all good.
Monday, July 26, 2010
Beautiful Flower
I wrote and rewrote about 9 blogs but I just couldn't get my words together. I was going to write about the visit to the Neurologist last Friday, the steroid therapy Christian tried last week, how much I love, love, love ISR, and some upcoming things this week, including two of my babies' birthdays.
But I couldn't get my head on straight because I kept thinking about another family.
This family suddenly lost their little fighter, Samantha, on Sunday. She fought and fought until her fight was through and it was time to go home.
Her mommy, Heather, is a blog mommy friend of mine who I know through blog and facebook comments. But through her beautiful writing, I knew her story, I knew Sam's story.
Sam's story was a hard one, but even through words on a blog there was joy, there was celebration, there was humor, and there was peace.
I am in awe of Heather and her persistence and positivity when it came to being Samantha's mother. I am inspired by her every day. Reading her entries inspired me not to ever feel sorry for myself and our situation. What we do is still parenting - whether it's burping babies or changing g-tubes - it's still parenting, no more and no less.
My heart is heavy for her today and she's in every other thought. She and Sam were and are a continued inspiration. For such a little thing that Sam left a mighty big footprint on this world.
So I'm taking time out of my appointment-swim lessons-medications-complaining-hbot-day to day happenings to simply remember Sam.
"The flower that blooms in adversity is the most rare and beautiful of all."
-Emperor from Mulan
But I couldn't get my head on straight because I kept thinking about another family.
This family suddenly lost their little fighter, Samantha, on Sunday. She fought and fought until her fight was through and it was time to go home.
Her mommy, Heather, is a blog mommy friend of mine who I know through blog and facebook comments. But through her beautiful writing, I knew her story, I knew Sam's story.
Sam's story was a hard one, but even through words on a blog there was joy, there was celebration, there was humor, and there was peace.
I am in awe of Heather and her persistence and positivity when it came to being Samantha's mother. I am inspired by her every day. Reading her entries inspired me not to ever feel sorry for myself and our situation. What we do is still parenting - whether it's burping babies or changing g-tubes - it's still parenting, no more and no less.
My heart is heavy for her today and she's in every other thought. She and Sam were and are a continued inspiration. For such a little thing that Sam left a mighty big footprint on this world.
So I'm taking time out of my appointment-swim lessons-medications-complaining-hbot-day to day happenings to simply remember Sam.
"The flower that blooms in adversity is the most rare and beautiful of all."
-Emperor from Mulan
Saturday, May 29, 2010
Pinwheel
So we're trying this new feeding schedule that has Christian eating a little more in volume and more frequently throughout the day. Today was the first day and Christian did really great! Not one throw up, not even an attempt. The GI doctor informed us this is better than trying to pack everything into a continuous feed (small amounts every hour) over night. But I was doing this because he hardly tolerated daytime feeds and I could get the maximum amount of calories in him while he was sleeping.
Now he does GREAT with his feeds during the day so we were able to add more. This helps give him more energy and keeps his blood sugars level. Today was Day 1 and if it's any preview of what's to come I'll take more!
Now, it could have been coincidence, stars aligning, whatever, but Christian was moving around more today than I've seen him do in a long time. In the HBOT chamber I could hardly keep a hold of him. He kept moving himself into different positions so we had to keep adjusting. This is such a far cry from that last few weeks as I'm sure you can tell in some of the pictures. Frankly, he's zonked. It's the Vigabatrin. Relaxation and seizure control come at a price.
But now, I'm not sure if his body finally regulated to the dosage or if the new feeding schedule is giving him more energy or a mixture of both. It was so cool to see him a little more alive today. I bought him a pinwheel (Target...$1 - score on a sensory toy!) and he really reacted to it today. He was grabbing for it, looking at the metallic material, and even got it from one side of his body to the other grabbing the stem of the pinwheel (look at those tiny, careful little fingers in the picture). Now none of this was graceful by any means but who cares! He was actually more interested in this pinwheel than he's been in any of his toys for a long time. Oh, Christian's wrists are also looser. I think it's the recent round of HBOT, honestly. I love that stuff. Before, you really had to manipulate and massage Christian's wrists to bend back so he could weight bear. His right wrist was really hard to bend and sometimes just wouldn't. Lately, we've had no problems, in fact, he's initiated bending his wrists, both of them, on his own.
I just love that kid. When I hold him, which is often lately because he's so content being held, and he's having a really good eye contact day, he'll look right into my eyes and it reminds me how very much I love being his mom.
I think this picture really says it all, don't you?
Awww, sleepy baby.
Tuesday, May 11, 2010
Trial and Error
We had quite the morning!
Our whole team came for a visit. This includes Christian's Physical Therapist, Occupational/Feeding Therapist, Vision Therapist, and Early Intervention Coordinator.
It wasn't time for our review of goals and meds and schedules and doctors and stuff that's really kind of monotonous and lacks in productivity on our end, at least.
"The team" got together in one place at one time really just to compare notes and feed off each other. They picked a great day, too, because Christian started out super uncooperative. He was stuck to the left and wasn't budging. I'm sure that was tons of fun for the PT and vision therapist. Christian wasn't really participating and having a hard time bringing his eyes out of their very comfortable position on the left.
Then I finally remembered something I read about another mom patching or covering a strong eye to strengthen the weaker one. So I mentioned it. The PT covered his weaker eye, which is Christian's right. And it worked. He started moving his weaker eye and actually started participating. Then he started moving his head over and out of it's position to the left. The PT switched eyes and Christian started looking to the right, the far right. Finally! Some participation from this stubborn boy. And you know what...he hasn't stopped looking around since.
Just a few other updates:
I mentioned in my last post about how I wasn't as confident with Vigabatrin as I initially had been. Well, it's because Christian's jerks returned. Not any stronger, but just as frequent as they had been while on Keppra. So that's a bummer. All the great stuff that happened the first week turned back to same old Christian. Which, minus the seizures, isn't that bad. I mean with no tone, he had less movement and awareness. So he's now moving around again and hitting toys. So, of course, Christian is reacting differently than expected. I'm not upset, just puzzled. It is nice to see him moving his arms again so not all bad. I talked to the neuro and he suggested increasing the meds. So we'll try that and see what happens. It's a give and take, always. Trial and error. More drugs, less tone. Less drugs, more tone but more action and awareness. We'll see. You know I'll keep you posted! ;-)
We also started back at HBOT yesterday. And NO CRYING!!!! There were a few whimpers in protest today but they were consolable. That's the difference. A month ago he was crying, inconsolably, through the entire hour and change in that chamber. But now, so far, it's all good! Yay! It's good, no, great news because I really believe it is so beneficial for him.
Hmmm, what else can I tell you...oh yeah, I gave myself a gift for Mother's Day! Take a look! It's just for me and I felt it was becoming more and more necessary for the good of my sanity. It's just in it's baby stages so stay tuned for changes.
And last, but not least....babies in their jammies. Matching pajamas, no less. Oh yeah, I'm that kind of mommy.
Lola showing off her karate chops on her brother.
"Can both of you look at Mommy at the same time, please?"
Nope.
"I'm gonna punch her if you don't stop taking my picture."
The closest I'll get to both of them looking at the camera at the same time. Momentous.
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