It has finally come.
Tomorrow is our last day at Euro-Peds.
I'm sad about it. It's not really for one single reason. It's for a collection of reasons.
I feel like we've finally gotten into a groove with Christian's therapy. He's doing so well. I'll miss our little routine.
I'll miss our PT, Miss Shelly who has worked non-stop with Christian for four hours a day for two weeks. She's grown to be proud of him and cheer for him as much as I do.
I'll miss our drive to the hospital every day in the morning through the beginning of the pretty fall leaves of Michigan.
Speaking of Michigan, it grew on me. So different and so far away from home, I was pretty dumb struck when we first arrived, thinking How did we get here and where is the Target?
But now I know my little area, we've been to the mall, we have a favorite deli, I found a Target and I'm a little sad to go home.
Of course, I miss my home, my husband, Gabe, so much and I'm very excited to get back to life again.
However, I almost wish we had another week of therapy here. Christian has gained momentum in this second week and I just hope I can keep it going for him and build on it when we get home.
Manny comes to get us tomorrow so we can leave on Saturday. My sister and her family, who came to help during the second week, will be on their way, too.
All good things come to an end, I guess. But I'm ever so grateful for this opportunity for Christian and I hope that one day in the future, when time permits, I can help other families get these same opportunities for their kids who need it.
See you in Tucson!
See Christian and Lola's ISR video!
ISR CrossFit video from Shauna Quintero on Vimeo.
Donate to ISR in Christian's name!
Thursday, September 30, 2010
Tuesday, September 28, 2010
Devil's Spawn
If seizures are the devil, then seizure medications are the devil's spawn.
Not all seizure medications, I'm sure. I'm just thinking one. One named Valproic Acid, also known as Depekote.
I'm sure this drug has been successful for some children, but for Christian it was not. In fact, I would argue that it was detrimental to his progress.
I'm not going to go into specifics about why he was on that drug in the first place because I've mentioned it before. The important thing is he's not on it anymore.
I gave it two months at the recommendation of our neurologist. It didn't work. And apparently the plan of action for neurologists with seizure medications is that if it doesn't work...add more!
That plan of action not only failed but it also made things worse. Valproic acid made Christian worse. He would go into fits of eye rolling, which I'm pretty sure were seizures, multiple times a day.
So when it was time to see the neurologist when we had reached our maximum levels of medicine, confirmed it with blood levels, and had concluded that no, THIS IS NOT WORKING, we were done with it.
Now with the gift of the retrospective, I now see just how awful this medication was for him. Christian no longer moved. If I thought he didn't move before, I mean he really didn't move with this medication. He didn't reach for things anymore or move his arms. He didn't really do anything. I might even go so far as to say he might of regressed a little. I didn't know things were gone until they started coming back and I sat and thought...Hey, he used to do that along time ago.
This pushes me even further into the Ketogenic Diet abyss. I only use that word because I seem to live in a town full of people who know very little about this diet and are very timid to even touch it with a ten foot poll. I keep getting passed off from nutritionist to dietitian (thought they were the same thing, guess not) to neurologist and back. And now people are finally just trying to send us to Phoenix where the specialists hang out. Geez.
He's doing a lot better now and it just so happens that we're at Euro-Peds this week. So we're able to get some good physical therapy to get back some skills that fell asleep during this medication mess and build on them. And damn that retrospect if it didn't show me that at this very moment, we are right where we belong most.
The whole thing actually makes me a little angry. But I've gained some knowledge out of the whole ordeal. I used to think before that the mild jerks and seizures might be getting in the way of Christian's progress. Now I've learned that medication actually got in the way more so than what it was trying to medicate!
It's okay, though. Christian's no longer on the medication and we can move forward. He is on Sabril (Vigabatrin), which hasn't caused any side effects that we can see but we will soon have to wean off of this, too.
Another lesson I forgot and have been reminded of: NEVER, EVER, EVER SECOND GUESS MYSELF.
EVER.
Good riddance, Valproic Acid.
Not all seizure medications, I'm sure. I'm just thinking one. One named Valproic Acid, also known as Depekote.
I'm sure this drug has been successful for some children, but for Christian it was not. In fact, I would argue that it was detrimental to his progress.
I'm not going to go into specifics about why he was on that drug in the first place because I've mentioned it before. The important thing is he's not on it anymore.
I gave it two months at the recommendation of our neurologist. It didn't work. And apparently the plan of action for neurologists with seizure medications is that if it doesn't work...add more!
That plan of action not only failed but it also made things worse. Valproic acid made Christian worse. He would go into fits of eye rolling, which I'm pretty sure were seizures, multiple times a day.
So when it was time to see the neurologist when we had reached our maximum levels of medicine, confirmed it with blood levels, and had concluded that no, THIS IS NOT WORKING, we were done with it.
Now with the gift of the retrospective, I now see just how awful this medication was for him. Christian no longer moved. If I thought he didn't move before, I mean he really didn't move with this medication. He didn't reach for things anymore or move his arms. He didn't really do anything. I might even go so far as to say he might of regressed a little. I didn't know things were gone until they started coming back and I sat and thought...Hey, he used to do that along time ago.
This pushes me even further into the Ketogenic Diet abyss. I only use that word because I seem to live in a town full of people who know very little about this diet and are very timid to even touch it with a ten foot poll. I keep getting passed off from nutritionist to dietitian (thought they were the same thing, guess not) to neurologist and back. And now people are finally just trying to send us to Phoenix where the specialists hang out. Geez.
He's doing a lot better now and it just so happens that we're at Euro-Peds this week. So we're able to get some good physical therapy to get back some skills that fell asleep during this medication mess and build on them. And damn that retrospect if it didn't show me that at this very moment, we are right where we belong most.
The whole thing actually makes me a little angry. But I've gained some knowledge out of the whole ordeal. I used to think before that the mild jerks and seizures might be getting in the way of Christian's progress. Now I've learned that medication actually got in the way more so than what it was trying to medicate!
It's okay, though. Christian's no longer on the medication and we can move forward. He is on Sabril (Vigabatrin), which hasn't caused any side effects that we can see but we will soon have to wean off of this, too.
Another lesson I forgot and have been reminded of: NEVER, EVER, EVER SECOND GUESS MYSELF.
EVER.
Good riddance, Valproic Acid.
Saturday, September 25, 2010
Euro-Peds (Week 1)
Week one at Euro-Peds was exhausting.
It's not the actual therapy. No. It's the therapy trip. I've now noticed that during these therapy "trips," and I'm sure other special needs parents can feel me on this one, it is so entirely exhausting and I have no explanation for it. I'm not even the one doing the therapy!
I guess I'm dumbfounded by the level of exhaustion because we aren't doing anything we wouldn't normally do back home. I load Christian and Lola in and out of the car all the time. I think it's a mixture of emotional exhaustion, time difference, and weather maybe? I don't know. Maybe it's the amount of energy you put into the amount of hope you have for each new therapy. It's so much that it eventually comes to a head and you have to sleep it off.
I'm going to wait to compare Euro-Peds and the NAPA center until we're done with the two weeks and I can wrap my brain around everything.
For now, I'll explain what we do every day.
We start at 9 A.M. every morning. For the first two hours Christian is on a massage table. He's given a massage from head to toe with range of motion and heating pads are placed on his muscles to loosen them up. The lights are off and Baby Einstein or something equally stimulating is playing to the side. It's all very relaxing and I've caught myself falling asleep during the whole ordeal. I mean, he even gets a little facial (lucky!) and this whole process is important because it wakes up and loosens Christian's muscles, including his facial muscles. These muscles are important for things like facial expressions and smiling (hint, hint, Christian!). I look at it as Christian's mini-spa time.
His leg is doing much better, by the way.
So from what I can gather, Christian did pretty well. But it's hard to make a comparison, honestly.
When we first arrived, it seemed so different. But really, Christian is different from when he went to NAPA. First, he's not throwing up multiple times a day. That caused so much pain, I'm sure, and subsequently, he would arch into extension...a lot. He also had a lot more jerks and seizure activity, so I'm not sure how that comes into the equation. And finally, he didn't have Botox in his quads or adductors. So at this point, his body is a lot more relaxed.
That's why I want to give it another week before I start making summaries and comparisons. But it's going well so far.
As for how we're doing outside of therapy, my mom flew out with us last Saturday and helped us the first week. We just took her back to the airport and my sister and her family (my brother in law, niece, and two nephews) came to help me for the second week. Then Manny will come Friday and fly us back. Let's play "How many people can we fit into a hotel room in two weeks!" Seriously, though, we are so blessed to have so much family to support us and help us. At the very least, when it exhausts this mommy, she can take a nap...or two.
It's not the actual therapy. No. It's the therapy trip. I've now noticed that during these therapy "trips," and I'm sure other special needs parents can feel me on this one, it is so entirely exhausting and I have no explanation for it. I'm not even the one doing the therapy!
I guess I'm dumbfounded by the level of exhaustion because we aren't doing anything we wouldn't normally do back home. I load Christian and Lola in and out of the car all the time. I think it's a mixture of emotional exhaustion, time difference, and weather maybe? I don't know. Maybe it's the amount of energy you put into the amount of hope you have for each new therapy. It's so much that it eventually comes to a head and you have to sleep it off.
I'm going to wait to compare Euro-Peds and the NAPA center until we're done with the two weeks and I can wrap my brain around everything.
For now, I'll explain what we do every day.
We start at 9 A.M. every morning. For the first two hours Christian is on a massage table. He's given a massage from head to toe with range of motion and heating pads are placed on his muscles to loosen them up. The lights are off and Baby Einstein or something equally stimulating is playing to the side. It's all very relaxing and I've caught myself falling asleep during the whole ordeal. I mean, he even gets a little facial (lucky!) and this whole process is important because it wakes up and loosens Christian's muscles, including his facial muscles. These muscles are important for things like facial expressions and smiling (hint, hint, Christian!). I look at it as Christian's mini-spa time.
Mini-spa time
At the end of mini-spa time, Christian is dressed in his suit. It's like the neurosuit or the therasuit, except for it's patented for Euro-Peds. From what I can see there isn't really anything different between the suits other than cost. And for some reason, it looks like Christian is working harder and breathing harder in the Euro-Peds suit. I can't explain why so it must be something I don't see.
After he's suited up, it's time for the gym room. This is where Christian works on the ball and specifically on head and trunk control. That's been pretty much the theme of the whole week and will probably be the theme with the whole therapy. We can put Christian in all kinds of different positions but it doesn't really mean anything unless he's got true head and trunk control - not control from tone, which is what he's previously used.
Working on head control - A trick to get a child to lift their head is to tickle the back of the neck. With Christian, it's tickling his big ol' cheeks.
Christian also gets electrode stimulation where little electrodes are placed on different muscles and electric pulses are given to the muscles to make them contract and hopefully send a message to Christian's brain that he has these muscles and he can and should use them. Don't worry, it does not hurt. Christian would let me know if it did, trust me.
Christian has also been able to ride his first bike. It's specially tailored for kids like Christian and it really works his legs. At first, as I posted before, he hated it. He cried and cried. But yesterday, he was able to hang for a little bike ride and did awesome.
Another go at the bike...in an ascot.
His leg is doing much better, by the way.
So from what I can gather, Christian did pretty well. But it's hard to make a comparison, honestly.
When we first arrived, it seemed so different. But really, Christian is different from when he went to NAPA. First, he's not throwing up multiple times a day. That caused so much pain, I'm sure, and subsequently, he would arch into extension...a lot. He also had a lot more jerks and seizure activity, so I'm not sure how that comes into the equation. And finally, he didn't have Botox in his quads or adductors. So at this point, his body is a lot more relaxed.
That's why I want to give it another week before I start making summaries and comparisons. But it's going well so far.
As for how we're doing outside of therapy, my mom flew out with us last Saturday and helped us the first week. We just took her back to the airport and my sister and her family (my brother in law, niece, and two nephews) came to help me for the second week. Then Manny will come Friday and fly us back. Let's play "How many people can we fit into a hotel room in two weeks!" Seriously, though, we are so blessed to have so much family to support us and help us. At the very least, when it exhausts this mommy, she can take a nap...or two.
Cousin Kaleb showing Christian some cool new toys.
Ready to melt?....
I'm a puddle.
Tuesday, September 21, 2010
Lucky (Un)Break
It was a lively day 2, I can say that, at least.
Well, maybe not so much lively as it was somewhat stressful.
It's a weird combination of many thoughts and feelings I have going on right now and I'm trying to save all of them until the end of the first week to get an accurate summary.
I write this blog for 1) updates on Christian and 2) to help other families.
So for families thinking about possibly doing an intensive therapy program for their child, this will now make two different intensive therapy programs at two different companies in two different areas of the country at the end of our stay so I want to give a comparison between the two.
For now I can just make comparisons based on all of two days of therapy.
Euro-Peds is in more of a hospital setting. As such, they are a little more careful with who they allow to do suit therapy, the kinds of therapy they'll do, and overall care of the child. So with Christian they are a little more careful. I'm not saying that's a good or a bad thing at this point. I mention it because of what happened next.
Yesterday while going to a kneeling position Christian screamed out in pain. He started crying and it was a "hurt" cry because he doesn't just all of the sudden go into a hysterical crying fit for no reason. For the rest of the day his left leg was sensitive and he whined every time it was moved or touched. Never a good sign.
So today we started therapy, which always starts out with massage and stimulation of the extremities. His leg was still sensitive so the PT thought it would be best we just take a look in radiology. We went to get x-rays, which was surprisingly fast - all of a 20 minute process - and good news! No break! He did mention that Christian has very thin bones.
That's not surprising. With kids like Christian, who don't bear weight on their legs regularly, muscle mass decreases and so does bone density. Breaks and fractures are very common. That's why we have a stander and try to make sure it and weight bearing exercises are a regular part of his routine.
At this time we just assume it was a big stretch or pulled muscle. It was such a relief to find out there wasn't a fracture. Can you imagine? On day 2? Seriously???
And the irony of it all is that Euro-Peds, if anything, has been gentler with Christian (not saying that's a good or bad thing yet) and something like this happens, but he's been to NAPA, where it's a little more aggressive and intense with therapy (not saying that's a good thing or bad thing yet, either). But, of course, it would go that way just to keep things interesting, right?
Well, maybe not so much lively as it was somewhat stressful.
It's a weird combination of many thoughts and feelings I have going on right now and I'm trying to save all of them until the end of the first week to get an accurate summary.
I write this blog for 1) updates on Christian and 2) to help other families.
So for families thinking about possibly doing an intensive therapy program for their child, this will now make two different intensive therapy programs at two different companies in two different areas of the country at the end of our stay so I want to give a comparison between the two.
For now I can just make comparisons based on all of two days of therapy.
Euro-Peds is in more of a hospital setting. As such, they are a little more careful with who they allow to do suit therapy, the kinds of therapy they'll do, and overall care of the child. So with Christian they are a little more careful. I'm not saying that's a good or a bad thing at this point. I mention it because of what happened next.
Yesterday while going to a kneeling position Christian screamed out in pain. He started crying and it was a "hurt" cry because he doesn't just all of the sudden go into a hysterical crying fit for no reason. For the rest of the day his left leg was sensitive and he whined every time it was moved or touched. Never a good sign.
So today we started therapy, which always starts out with massage and stimulation of the extremities. His leg was still sensitive so the PT thought it would be best we just take a look in radiology. We went to get x-rays, which was surprisingly fast - all of a 20 minute process - and good news! No break! He did mention that Christian has very thin bones.
That's not surprising. With kids like Christian, who don't bear weight on their legs regularly, muscle mass decreases and so does bone density. Breaks and fractures are very common. That's why we have a stander and try to make sure it and weight bearing exercises are a regular part of his routine.
At this time we just assume it was a big stretch or pulled muscle. It was such a relief to find out there wasn't a fracture. Can you imagine? On day 2? Seriously???
And the irony of it all is that Euro-Peds, if anything, has been gentler with Christian (not saying that's a good or bad thing yet) and something like this happens, but he's been to NAPA, where it's a little more aggressive and intense with therapy (not saying that's a good thing or bad thing yet, either). But, of course, it would go that way just to keep things interesting, right?
Monday, September 20, 2010
Hello, Michigan!
It's 65 degrees outside. The leaves are changing and we're surrounded by greenery.
We're not in Arizona anymore, Toto.
Nope, we're in Michigan!
The flight went surprisingly well. This was, after all, our first time flying with Christian post accident, and Lola's first time flying outside of my belly.
And a little shout out to Frontier Airlines for serving chocolate chip cookies on their flights. Good call, Frontier. Major points. Not to mention, they were so helpful and accommodating the whole way through.
Christian had his own seat so he got to sit up like a big boy.
Hey, big boys sleep in big boy seats, too!
We finally checked in to the hotel and what was there waiting for us at the front desk? A basket of goodies from Euro-Peds! So sweet!
We had our first session this morning and it went well. It was more of an evaulation but we did get down to business. Christian did stretching and at the very last hour, I think Christian had just had enough. He had been pushed past his limits. Which was a shame because we tried to give him his first bicycle ride and he just about flipped out. Done does not even begin to explain it...
Why did I post such a torturous event?
Well, because this is his first bike ride! Too bad he hated it, but I don't think the bike should take it personally. It'll be better next time, bike. He was just spent.
And this was him upon completion of the bike ride...
...asleep.
And not to be outdone, Lola was introduced to a toy shopping cart just the right size for her 9 month old stature. So she got to try out her walking skills.
I still can't believe we're actually in Michigan attending this therapy. I'm so thankful for my family because I COULD NOT do this alone. My mom is helping, my sister and her family are helping, and Manny will be coming to get us. Also, Miracle Flights is an over the top, amazingly generous organization that helps children get to where they need to go for therapy and medical treatments. We are so blessed to have their assistance with our tickets, as well.
Of course, we wouldn't even be in Michigan were it not for all of Christian's supporters, those who've donated, and those who participated in any way, shape, or form with the blogction last week (I'm almost done notifying every winner, I just have a few left).
Thank you! Thank you! Thank you!
More therapy coming up and more pictures and video to follow.
Saturday, September 18, 2010
Fun for $1500, Please!
I actually had fun with this blogction!
Fun? You ask. Yes, FUN! I think it was because I was more comfortable with the blogging style auction and because it was a slightly smaller auction, it was a lot easier to handle.
We raised about $1500 for our Euro-Peds trip, specifically for Suit Therapy during the intensive physical therapy over the course of two weeks.
This is so awesome and so above and beyond what I thought we'd raise. Especially considering that I only decided to try and do an auction a month ago so I only had a month to organize the whole thing. And I had very little to auction off!
But people...friends...family...you all came through! And we had some kick ass donations, if I do say so myself. We're so blessed to have such creative, talented, and generous people in our lives. I think that's what made this blogction the most fun.
And in true fashion, just like last time I closed the blogction, I'm off! We're off, actually. We're taking off to Michigan tomorrow morning. It wasn't supposed to be quite like this but as it turns out, we couldn't get a flight Sunday so we had to go tomorrow...tomorrow morning...and it's after midnight...and I'm blogging...and packing...and organizing bidders to emails to winners to items. Goodness.
Anyway, I've gotta a run but thank you, again, to all of you who participated in the blogction, whether it was donating an item, bidding on an item, or just promoting the blogction, I'm so truly grateful. I know it's tough out there right now and very, very busy. So I appreciate any single second of thought you've given to my son and my family.
Good night! See you in Michigan!
P.S. -Special shout out to Jenny and Pam! You two are the bestist.
Fun? You ask. Yes, FUN! I think it was because I was more comfortable with the blogging style auction and because it was a slightly smaller auction, it was a lot easier to handle.
We raised about $1500 for our Euro-Peds trip, specifically for Suit Therapy during the intensive physical therapy over the course of two weeks.
This is so awesome and so above and beyond what I thought we'd raise. Especially considering that I only decided to try and do an auction a month ago so I only had a month to organize the whole thing. And I had very little to auction off!
But people...friends...family...you all came through! And we had some kick ass donations, if I do say so myself. We're so blessed to have such creative, talented, and generous people in our lives. I think that's what made this blogction the most fun.
And in true fashion, just like last time I closed the blogction, I'm off! We're off, actually. We're taking off to Michigan tomorrow morning. It wasn't supposed to be quite like this but as it turns out, we couldn't get a flight Sunday so we had to go tomorrow...tomorrow morning...and it's after midnight...and I'm blogging...and packing...and organizing bidders to emails to winners to items. Goodness.
Anyway, I've gotta a run but thank you, again, to all of you who participated in the blogction, whether it was donating an item, bidding on an item, or just promoting the blogction, I'm so truly grateful. I know it's tough out there right now and very, very busy. So I appreciate any single second of thought you've given to my son and my family.
Good night! See you in Michigan!
P.S. -Special shout out to Jenny and Pam! You two are the bestist.
Wednesday, September 15, 2010
A Moose...or Maybe a Reindeer
I'm sitting here at almost 11 o'clock at night, which is early by my nighttime standards, eating Cap'n Crunch.
Don't judge me. It's pretty much the perfect food, really. It's not quite sweet enough for me to feel like I'm eating something unhealthy right before bed.
I was looking forward to this day because this was the day Christian was going to paint his first picture for me. I mean for us, but really it's for me.
I was really excited because this meant that he'd be doing something kind of, sort of, in a round about way resembling what he might be doing normally at this age. So, of course, I was excited. And I had been wanting to have him do this for a while.
When the OT suggested it, I was on it! I bought Chocolate Fudge pudding, I contemplated buying new magnets for the fridge in order to display my Picasso's work of art.
So of course, he would be irritable today. Of course, that's the way it would go.
We had decided to put him in his stander because that is our best set up. It's got the best tray because it is so adjustable that you can pretty much put anything at any angle for him to touch and see. And in his stander, he is alert. If he's too comfortable, he tends to get lazy and zone out. If he's challenged, he's activated and alert. So we like the stander because he's comfortable but it's just enough stimulation to keep him active.
Today, of all days, he was not happy in his stander. The stander is usually a happy place for us. Not today. But we pushed on. He whined, and we pushed.
I'm glad we pushed. I mean I would have liked him to enjoy the experience just a little more but we take what we can get. He responded to the gooey chocolate pudding under his hands by opening his hands and keeping his wrists straight. The OT also worked with his chocolaty hands and brought them to his mouth so he could taste the pudding.
So we were able to get Christian's very first, albeit reluctant, finger painting out of the deal. This means so much because as Christian gets older, there is a greater divide between him and kids his age. When he was 11 months old, it wasn't too far off. But at 2 years old, it's now a widening gap.
So this picture means a lot to me. I mean he was irritable and stubborn, much like a two year old might be, and he painted a picture with his hands, much like a two year old might do.
And I proudly hung up his picture on the fridge, much like the proud mama of a two year old who just painted his first picture might do...
I'm not sure he really knows what he was doing, but it really doesn't matter. That wasn't the point. The point was for him to get touch, smell, and taste stimulation. And that he did.
Now deciphering what exactly he finger painted is another story. Observing these paintings is a lot like making shapes out of clouds.
I see a moose. Or a reindeer.
I think it's awesome. Even better than Cap'n Crunch.
Don't judge me. It's pretty much the perfect food, really. It's not quite sweet enough for me to feel like I'm eating something unhealthy right before bed.
I was looking forward to this day because this was the day Christian was going to paint his first picture for me. I mean for us, but really it's for me.
I was really excited because this meant that he'd be doing something kind of, sort of, in a round about way resembling what he might be doing normally at this age. So, of course, I was excited. And I had been wanting to have him do this for a while.
When the OT suggested it, I was on it! I bought Chocolate Fudge pudding, I contemplated buying new magnets for the fridge in order to display my Picasso's work of art.
So of course, he would be irritable today. Of course, that's the way it would go.
We had decided to put him in his stander because that is our best set up. It's got the best tray because it is so adjustable that you can pretty much put anything at any angle for him to touch and see. And in his stander, he is alert. If he's too comfortable, he tends to get lazy and zone out. If he's challenged, he's activated and alert. So we like the stander because he's comfortable but it's just enough stimulation to keep him active.
Today, of all days, he was not happy in his stander. The stander is usually a happy place for us. Not today. But we pushed on. He whined, and we pushed.
I'm glad we pushed. I mean I would have liked him to enjoy the experience just a little more but we take what we can get. He responded to the gooey chocolate pudding under his hands by opening his hands and keeping his wrists straight. The OT also worked with his chocolaty hands and brought them to his mouth so he could taste the pudding.
So we were able to get Christian's very first, albeit reluctant, finger painting out of the deal. This means so much because as Christian gets older, there is a greater divide between him and kids his age. When he was 11 months old, it wasn't too far off. But at 2 years old, it's now a widening gap.
So this picture means a lot to me. I mean he was irritable and stubborn, much like a two year old might be, and he painted a picture with his hands, much like a two year old might do.
And I proudly hung up his picture on the fridge, much like the proud mama of a two year old who just painted his first picture might do...
I'm not sure he really knows what he was doing, but it really doesn't matter. That wasn't the point. The point was for him to get touch, smell, and taste stimulation. And that he did.
Now deciphering what exactly he finger painted is another story. Observing these paintings is a lot like making shapes out of clouds.
I see a moose. Or a reindeer.
I think it's awesome. Even better than Cap'n Crunch.
Tuesday, September 14, 2010
Clearing a Path
Oh me, oh my there is a lot going on this week.
Today we visited the Neurologist. I was actually looking forward to this because I was not excited to put Christian on another seizure medication but I reluctantly conceded about two months ago. Yes, it was against what I originally wanted and planned, but it's very seductive when you're told..."Well, there's this drug...it might work...we'll know right away." But I knew this one wasn't going to work because we did a trial of it months and months ago and it made things worse. It's Valproic Acid (Depekote). But in order to give the doctor the benefit of the doubt and to at least say I gave it a fair shot, I went against my judgement.
Well, whaddya know. It seemed to make things worse. Awesome.
Luckily, the neuro said that if it wasn't helping, we could stop. Just what I was thinking.
I told him today that I've done further research and I feel pretty strongly about starting the Ketogenic Diet. It's got some notable success in seizure control with kids like Christian that don't have a cut and dry seizure disorder. He's sort of all over the place just like his injury. So it's hard to pinpoint but the diet is successful in 2 out of 3 children who try it. It's not an easy choice, believe me. It will take work, but seizure control is so worth it. Christian is so worth it.
All I need to do now is secure a pediatric dietitian and it's on! I'm excited. I'm not putting all my eggs in this basket. But I can say that at least I'll know...I would hate to try all this poison (dramatic much?) when all the while the Ketogenic Diet could be the answer. On the flip side, if it doesn't work, then it can be put to rest once and for all and I won't be wondering about it all the time.
So we'll begin the process when we get back from Europeds, God willing.
Speaking of Europeds...we're getting ready to go! I cannot believe this is actually happening. But that's just how it's gone for us. Stars align, I guess but I choose to believe God has a hand in it. He's in charge of aligning stars and clearing paths and such.
And speaking of clearing paths...I must clear a path to the blogction!
The site link is located on the side bar at the very top but here it is again...Christian's Europeds Blogction.
We've got some really great stuff. Stuff I really would bid on if it wasn't counterproductive. But I will sit here and be jealous of whoever wins those chocolate cupcakes...those truffles...those homemade pickles...that photo session in California...you lucky ducks!
Have fun bidding and thanks ahead of time for supporting Christian!
Today we visited the Neurologist. I was actually looking forward to this because I was not excited to put Christian on another seizure medication but I reluctantly conceded about two months ago. Yes, it was against what I originally wanted and planned, but it's very seductive when you're told..."Well, there's this drug...it might work...we'll know right away." But I knew this one wasn't going to work because we did a trial of it months and months ago and it made things worse. It's Valproic Acid (Depekote). But in order to give the doctor the benefit of the doubt and to at least say I gave it a fair shot, I went against my judgement.
Well, whaddya know. It seemed to make things worse. Awesome.
Luckily, the neuro said that if it wasn't helping, we could stop. Just what I was thinking.
I told him today that I've done further research and I feel pretty strongly about starting the Ketogenic Diet. It's got some notable success in seizure control with kids like Christian that don't have a cut and dry seizure disorder. He's sort of all over the place just like his injury. So it's hard to pinpoint but the diet is successful in 2 out of 3 children who try it. It's not an easy choice, believe me. It will take work, but seizure control is so worth it. Christian is so worth it.
All I need to do now is secure a pediatric dietitian and it's on! I'm excited. I'm not putting all my eggs in this basket. But I can say that at least I'll know...I would hate to try all this poison (dramatic much?) when all the while the Ketogenic Diet could be the answer. On the flip side, if it doesn't work, then it can be put to rest once and for all and I won't be wondering about it all the time.
So we'll begin the process when we get back from Europeds, God willing.
Speaking of Europeds...we're getting ready to go! I cannot believe this is actually happening. But that's just how it's gone for us. Stars align, I guess but I choose to believe God has a hand in it. He's in charge of aligning stars and clearing paths and such.
And speaking of clearing paths...I must clear a path to the blogction!
The site link is located on the side bar at the very top but here it is again...Christian's Europeds Blogction.
We've got some really great stuff. Stuff I really would bid on if it wasn't counterproductive. But I will sit here and be jealous of whoever wins those chocolate cupcakes...those truffles...those homemade pickles...that photo session in California...you lucky ducks!
Have fun bidding and thanks ahead of time for supporting Christian!
Friday, September 10, 2010
Panda Bear
Okay, this will be the last time I mention Orange Chicken, at least for a while.
But the Orange Chicken was delicious as always, as was his friend, Beijing Beef.
A good time was had by all. It's always really fun to get everyone together and catch up. We got to meet some of the people who have been following Christian since just after the accident. We also saw friends we haven't seen for a while. We were surrounded by friends and family who were there to support Christian, which is all together awesome. It was a pretty good turn out, too. And we stayed there until after bedtimes and it was finally time to go home.
But it was one of those events where my husband and I go home with smiles on our faces and say things like, "Remember when so and so said...that was so funny!" and "Wasn't it fun to see..."or"...How long has it been since we've seen them anyway?" And we finish the day feeling incredibly blessed by those who surround us, old and new. I even had the pleasure of meeting the uncle of another little boy who recently suffered the same accident as Christian did last summer. This little boy is Owen and he's still in the hospital so prayers are still needed for Baby Owen to get healthy so he can go home.
So it's one fundraiser down and one to go!
The auction begins next Tuesday, September 14th at 4PM AZ time. Sorry, I couldn't choose another time zone, but Arizona is where I live all year round and we NEVER change our clocks. So this is the only way I know how to operate. When people ask me, "Does that account for Daylight Savings Time?" I'm like, "Daylight Savings Whaaa?"
The auction will end on Friday, September 17th at 8PM. I chose a smaller time frame because this will be a smaller auction. Mama needs her sanity, people. So it really works out that this auction will be smaller in size and time frame. But don't let that deter you. Oh, no. There are some really cool, not to mention, delicious items to bid on. And every time a generous donor sends me something, I'm half tempted to bid on it myself! But I won't.
I think I'm having deja vu because I'm pretty sure I said that last time.
The auction blog address is http://christiansjourneyblogction.blogspot.com/.
The auction address is also listed at the top of my sidebar to the right under Start Bidding.
Anyway, after the auction closes (literally a few days), it's time to go to Europeds! Tickets have been purchased, arrangements have been made, and x-rays have been sent. I can't believe it's less than two weeks away! Gaaah, I have so much to do. Wanna make time go by quicker? Plan a bunch of stuff right before you leave. That accelerates time to lightening speed.
Oh, and P.S. - This is Christian's first plain ride since the accident. I have no doubt he'll do fine but it will be interesting flying with "equipment" and feeding pumps. I'm really hoping it will go smoothly.
Happy Weekend!
Tuesday, September 7, 2010
Labor Day
On this Labor Day we got out of dodge.
We decided to visit Wilcox. I've mentioned it before in the blog. We go every year in the fall to get pumpkins and apples and apple pie and apple ice cream. It's a tradition.
So off we went...
We decided to visit Wilcox. I've mentioned it before in the blog. We go every year in the fall to get pumpkins and apples and apple pie and apple ice cream. It's a tradition.
So off we went...
(I made this one extra large so you can see his little eye peaking out from underneath his baseball cap. It's so stinkin cute and he's such a little snuggler that even though he weighs close to 30 pounds I will carry him, back hurting, bad posture, just to hold his cozy little body next to me.)
That's my mom to the left and my kids...I'm very proud of my kids.
My boy, Christian, I can say I'm proud of. But I had a kind of revelation of sorts over this Labor Day weekend. I mean I would always say I was proud of Christian for what he's gone through and what he's accomplished. Of course, I'm proud of him.
But sometimes underneath that there is a restlessness. I'm restless sometimes with the rate of progress. There are times when it catapults us into the next awaiting stage and we're all happy and excited. But there are plateaus with stagnant air that causes some...restlessness.
So I'm watching Christian this weekend and I'm rolling him across the floor. I used to roll him across the floor like a rag doll, because he surely was not going to lift a finger to participate. He didn't move a muscle. He just flopped where I put him and ended up where he landed.
And because I believe in him so much I would think - Why won't you just move! You know you can! You have two legs and two arms and a perfectly good body. What is the problem?
It's his not quite perfect brain. We all know that, it's nothing new. But as I watched him this weekend, he's grown to start participating. Even though he cannot roll all the way across that carpet floor by himself, he's now leaning into the roll, moving his leg with it, swinging his arms over, turning his head, positioning his arms where his brain thinks it might be conducive to aid in this torturous roll his mother is putting him through.
His arms go where his brain thinks they should go.
There is so much profundity in that. Because what this looks like isn't pretty. His arms don't end up over his head or pushing him off the ground. His brain tells them to pull back and stiffen next to his sides. This is how his brain thinks he should roll.
His little legs shake just trying to lift off the ground and move, but they try and they try hard.
So I have a deeper level of pride for my boy because he is trying, it's just not in the way that I recognize it. But when I saw him during rolling exercises, he squirmed and tweaked and twisted himself into movement that was what he knew how to do. He was trying so hard that parts of his legs would quiver. It is so hard for him to simply move...but he tries in the only way his brain and body know how.
I am really so proud of him. Because he continues to try even when I don't understand his movements and even when his brain might not even understand his own movements. It is hard. It is work.
Christian labors every day. So today, we decided not to labor. On Labor Day we decided to hang out with family and eat peach crumb pie.
And just for Labor Day, I didn't make him roll.
Thursday, September 2, 2010
Oh, the Places You'll Go!
And will you succeed?
Yes! You will, indeed!
(98 and 3/4 percent guaranteed.)
KID, YOU'LL MOVE MOUNTAINS!
So...
be your name Buxbaum or Bixby or Bray
or Mordecai Ali Van Allen O'Shea,
You're off to Great Places!
Today is your day!
Your mountain is waiting.
So...get on your way!
-Dr. Seuss, Oh, the Places You'll Go!
I absolutely love this book with all of my Mommy heart.
I, of course, didn't appreciate the meaning behind it when I was little.
Years passed and I found myself shopping for a graduation present for my friend. Oh, the Places You'll Go! was being wisely marketed to recent grads. I wondered why so I read it...and I got a little teary. It was then that I learned to fully appreciate Dr. Seuss and his meaningful words.
In fact, Dr. Seuss has been a huge part of my life since I was little. I've seen The Grinch about a million times. Don't even get me started on Green Eggs and Ham.
Then the past year happened. Oh, the Places You'll Go! dug itself a little deeper into my heart.
If you have children, if you've gone through hell and made it out, or if you're set to go on a journey of some sort, read it! Yes, I said read a children's book! Actually, I'm not sure it was written for children at all! It will speak to you, I promise.
And wanna know about one of the coolest gifts ever given to Christian?
These are canvas paintings of different scenes from Oh, the Places You'll Go!
Wanna know what else? My own Mommy painted them herself! (She's an artist.)
Wanna know the coolest news ever?
They'll be available in the blogction. One winner will receive a set of four (4) canvas paintings customized from their choice of Green Eggs and Ham, Oh, the Places You'll Go!, or The Cat in the Hat.
She also gave us the actual book, which is pretty awesome all by itself.
Wednesday, September 1, 2010
Panda Fundraiser!
Did someone say Orange Chicken?
So I was ordering food at Panda Express a few months ago and noticed a stack of flyers next to the check out counter.
Well, what are those flyers all about, I wondered.
Why, it's a fundraising opportunity!
Oh, man, did the right Mama see that! I love Panda Express. It's probably one of the top choices for fast food for me. Seriously, they had me at Orange Chicken. And then when Orange Chicken's friend Beijing Beef came along...okay, now I'm getting hungry.
Anyway, it was the perfect opportunity to throw a fundraiser for our trip to Europeds.
Soooo, we are having a fundraiser!
Date: Thursday, September 9, 2010
Time: Come in anytime from 4PM-8PM
Location: River & La Cholla
Come one, come all! Just print the flyer below and bring it next Thursday, September 9th. We will receive a donation of 20% of your purchase. But you MUST bring the flyer! So I've provided a printout of the flyer. Just right click on the flyer below and choose PRINT PICTURE.
I've also provided a seperate page on the sidebar to the right with directions on how to participate in this fundraiser.
(There are two here. Feel free to share the other one with a friend!)
We hope to see you there!!!
Up in the Air
I'm stuck in the air.
There are a ton of projects I feel like I'm working on and none of them are settled and they're all in the air along with me.
I'm just waiting to land so I know which way to go.
First, we have a trip coming up! I'm excited. I mean I will be excited when everything is settled. But everything takes time. Everything requires paperwork and doctors' letters and new x-rays and fairy dust from the horn of a unicorn.
Second, I'm holding two fundraising events in the next two weeks. Why do I think it's a good idea to pack so much into a mere month? I could say that I thrive under pressure but it's probably more that I procrastinate so much that I have no choice.
Two fundraisers, you ask? Yes, the upcoming blogction beginning on the 14th of September (WE'RE STILL ACCEPTING DONATIONS FOR THIS AND WE WILL CONTINUE TO DO SO UNTIL THE NIGHT BEFORE THE BLOGCTION) and a fundraising night at Panda Express. I will post details tomorrow night (hopefully) but the gist is that Panda Express will be donating 20% of the total made from fliers between the hours of 4PM and 8PM on Thursday, September 9th.
Why Panda Express? Because Mama loves her Orange Chicken.
Oh yeah, and P.S. the neuro is aggravating me again because I feel like he isn't listening (surprise). I don't even have the energy to stay up and explain this so I will soon...and you know it will be in detail. For now I'm just going to whine about it a little.
I think I'm a little paralyzed by the feeling of being overwhelmed right now with what's coming in the next few weeks. And when I feel overwhelmed and unable to organize things, I just do nothing. So it's taking all that's in me to make sure each and every entity involved in this upcoming trip to Michigan gets each and every piece of information they request.
Did this just turn into a rant? I think it just did.
I'll turn in for now. More to come later!
There are a ton of projects I feel like I'm working on and none of them are settled and they're all in the air along with me.
I'm just waiting to land so I know which way to go.
First, we have a trip coming up! I'm excited. I mean I will be excited when everything is settled. But everything takes time. Everything requires paperwork and doctors' letters and new x-rays and fairy dust from the horn of a unicorn.
Second, I'm holding two fundraising events in the next two weeks. Why do I think it's a good idea to pack so much into a mere month? I could say that I thrive under pressure but it's probably more that I procrastinate so much that I have no choice.
Two fundraisers, you ask? Yes, the upcoming blogction beginning on the 14th of September (WE'RE STILL ACCEPTING DONATIONS FOR THIS AND WE WILL CONTINUE TO DO SO UNTIL THE NIGHT BEFORE THE BLOGCTION) and a fundraising night at Panda Express. I will post details tomorrow night (hopefully) but the gist is that Panda Express will be donating 20% of the total made from fliers between the hours of 4PM and 8PM on Thursday, September 9th.
Why Panda Express? Because Mama loves her Orange Chicken.
Oh yeah, and P.S. the neuro is aggravating me again because I feel like he isn't listening (surprise). I don't even have the energy to stay up and explain this so I will soon...and you know it will be in detail. For now I'm just going to whine about it a little.
I think I'm a little paralyzed by the feeling of being overwhelmed right now with what's coming in the next few weeks. And when I feel overwhelmed and unable to organize things, I just do nothing. So it's taking all that's in me to make sure each and every entity involved in this upcoming trip to Michigan gets each and every piece of information they request.
Did this just turn into a rant? I think it just did.
I'll turn in for now. More to come later!
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