Things have been a little bit rough around here lately. Not horrible, but...not as positive as we'd like. James has had a significant setback in his gut healing ever since the whole croup and steroids incident. The thought is that he is still so fragile, even when we see great strides, and that the fragile balance of good and bad bacteria or yeast in his gut was upset once again and we have to figure out how to get it back. He is going to do a 30 treatment of a thing called Interfase, which breaks down the biofilms that protect the bad bacteria, and then start on a particular heavy duty probiotic to see if we can gain ground. He's still good...just not quite as good as he was a few weeks ago. And that's just...disheartening and frustrating. But we are kinda used to that so we keep going, and we are getting better and better equipped to deal.
That's not the real point of this post though. That's just a brief update and to show you where my head has been lately.
Today we had the opportunity to go to a fundraiser and event to honor Forrest Allen and A Place To Be Music Therapy. Many of you who read this know about Forrest, and for those who don't, please go to his blog and scroll through to see what this amazing young man has overcome and continues to overcome with basically the best support system I have ever seen. http://forreststoneallen.blogspot.com
Forrest's dad was my equine vet through my competitive career, and I spent many hours hanging at the clinic waiting for Dr Allen to fix up my horse. :). I had met Forrest in passing, but we are talking 10-12 years ago. Forrest was injured in a snow boarding accident a few years ago, and through the years we have actually been at UVA in separate wings, but at the same time. I have religiously followed the blog that his family, friends, and caregivers have kept up to date with his progress. And it is amazing. But you wanna talk setbacks...these folks have fought and fought and fought through setbacks like no other. But they come out swinging every time.
Today I saw a young man who has probably THE best attitude and sense of self I have ever had the privilege to see. He spoke and walked and sang and thanked the people who have supported him. And I saw a group of friends, young college age kids, who's lives have been forever changed by their relationship to Forrest. People always talk about our crappy young people it seems. Well, meet this crew. They have a perspective and sense of loyalty that truly touched me. Ok, clearly I was affected this afternoon. It will probably be one of the most memorable events of my life. I cried a lot. In front of other people. But, I mean, I certainly wasn't the only one, so it's cool.
Anyway, Forrest was the star of the event, along with his family and friends, but it was also meant to showcase A Place To Be (http://www.aplacetobeva.org/). It's located in Middleburg and I've had my eye on it for a while. They work with anyone who may benefit, from people with any sort of disabilities to people who are looking for...something extra, it seems. We have had it in the backs of our minds for a while now, but a couple of weeks ago, Tom ran into Rae (Forrest's supermom) and she stressed how much she thought James would benefit. You tend to listen to Rae. It's worth it. :). So we went to learn more and we are more inspired than ever! I am completely convinced that this could be a huge bonus for James, and Eve too because why not. No details are worked out yet, but I will definitely keep the blog updated on everything. And I encourage anyone interested to go on their website and see what they are doing. It's....awe-inspiring.
The only last thing to say is...we were truly honored to be able to witness what we did today. To see people band together. To see a young man show such consideration for others despite his own struggles. To see other young people who you can tell are going to be awesome adults...way better than me (despite the fact that I was apparently wearing a dress one girl wore to her prom a couple years ago....though not with flip flops...she's clearly not from SoCal). To see people who care so much about what is happening to our kids, or even to adults (!), and who understand the teamwork that it takes...it was life changing. I could go on and on. Also, it was life changing to talk to someone (Tom Sweitzer is the director), who when we talked about James said, "oh, sensory" before we did....well that never happens. I'm still reeling from the whole experience so my thoughts are maybe not formulated properly, but...welcome to my brain. The big news is we have yet another encouraging avenue and are so so excited about it. It just adds a whole other level of hope, and I hope :) that someone else reads this and goes on their website and feels the same way. Once you read about Forrest, there's no way you won't be inspired to hope.
Also, I'm still trying to figure out if I'm super cool for wearing a dress a girl (who was beautiful, btw) wore to her prom 3 years ago, or if I'm way too old...
Then again, I didn't get to go to my prom...sooo...
Sunday, May 19, 2013
Saturday, May 18, 2013
Thursday, May 16, 2013
A Shining Moment
Feeding therapy is hard. Really mentally and emotionally more than anything else. Unless you've done it, you just can't really know how hard it is to actually teach a kid to eat, rather than them learning it naturally. Especially when that kid isn't really sure he wants to be doing it anyway. It's like trying to train a dog who isn't food motivated (Charlotte). It requires a whole lot of creativity (btw, I'm about the most uncreative person out there). You frequently want to tear your hair out. Or drink. Or both. And by drink I mean water. Totally kidding.
Anyway, we've gone through all kinds of ups and downs and weird emotions along the way. For probably the past year and half, James would throw a complete fit if he finished everything on his plate. Like, crazy panic. This had a direct relationship with him thinking that finishing his plate meant being sick. His associations would get a little mixed up this way, but that's pretty normal with kids. For instance, they associate the hospital with the bad stuff instead of getting better. Fear and trauma is powerful. Like he remembers the one time I burst into tears in the bathroom of the doctor's office when I was pregnant with Eve, and he was only 2 1/2. We went to the doctor probably 100 times when I was pregnant, but he remembers that visit (actually so do I. It was traumatic.)
Again...aaaanyway....I swear we've made a point to leave a few things on his plate for months, and then if he did finish everything, we could never make a big deal about it. In fact we can almost never make a big deal out of anything when he does something great, particularly when it is something he has struggled with and when we are asking him to do it by himself. We just make sure he knows we are happy and proud but just kinda downplay everything.
We've slowly seen some progress of him stepping out of his shell and letting us praise him more and more, and I 100% attribute this to the SMILE school. But it hasn't really branched out to feeding.
UNTIL TODAY!
Today we were having a quick snack of the fakest, crappiest fake cheese out there. But it's the only soy free, casein free stuff I can find that has more than 2 calories and he loves it. It's really the only processed thing he eats beyond pretzels (I don't make my own pretzels...I draw the line somewhere). I had cut it into 14 pieces (don't ask why I know that), and he had a strawberry cut up as well. In getting ready to head outside for a walk, I asked if he would eat 5 more bites of cheese and we would go. He said he actually had 8 more pieces of cheese and 5 bites of strawberry left. I said he was welcome to eat more than 5 bites if he wanted, but he didn't have to. All of a sudden he just pounded all of the cheese and strawberry, then ran around the house yelling and laughing, "I MADE MY PLATE CLEAN!!! I'M ALMOST AN ADULT!! AND I DID IT ALL BY MYSELF!!!"
Honestly, I didn't know what to say. Flabbergasted. Good word. So I just started running around the house and yelling with him cause what else do you do??
As most things I've found in this feeding therapy, this may not happen again for a long time. Or it may. Who knows. But for this moment in time, I felt like we did SOMETHING right. So I'll take it!
Anyway, we've gone through all kinds of ups and downs and weird emotions along the way. For probably the past year and half, James would throw a complete fit if he finished everything on his plate. Like, crazy panic. This had a direct relationship with him thinking that finishing his plate meant being sick. His associations would get a little mixed up this way, but that's pretty normal with kids. For instance, they associate the hospital with the bad stuff instead of getting better. Fear and trauma is powerful. Like he remembers the one time I burst into tears in the bathroom of the doctor's office when I was pregnant with Eve, and he was only 2 1/2. We went to the doctor probably 100 times when I was pregnant, but he remembers that visit (actually so do I. It was traumatic.)
Again...aaaanyway....I swear we've made a point to leave a few things on his plate for months, and then if he did finish everything, we could never make a big deal about it. In fact we can almost never make a big deal out of anything when he does something great, particularly when it is something he has struggled with and when we are asking him to do it by himself. We just make sure he knows we are happy and proud but just kinda downplay everything.
We've slowly seen some progress of him stepping out of his shell and letting us praise him more and more, and I 100% attribute this to the SMILE school. But it hasn't really branched out to feeding.
UNTIL TODAY!
Today we were having a quick snack of the fakest, crappiest fake cheese out there. But it's the only soy free, casein free stuff I can find that has more than 2 calories and he loves it. It's really the only processed thing he eats beyond pretzels (I don't make my own pretzels...I draw the line somewhere). I had cut it into 14 pieces (don't ask why I know that), and he had a strawberry cut up as well. In getting ready to head outside for a walk, I asked if he would eat 5 more bites of cheese and we would go. He said he actually had 8 more pieces of cheese and 5 bites of strawberry left. I said he was welcome to eat more than 5 bites if he wanted, but he didn't have to. All of a sudden he just pounded all of the cheese and strawberry, then ran around the house yelling and laughing, "I MADE MY PLATE CLEAN!!! I'M ALMOST AN ADULT!! AND I DID IT ALL BY MYSELF!!!"
Honestly, I didn't know what to say. Flabbergasted. Good word. So I just started running around the house and yelling with him cause what else do you do??
As most things I've found in this feeding therapy, this may not happen again for a long time. Or it may. Who knows. But for this moment in time, I felt like we did SOMETHING right. So I'll take it!
Wednesday, May 15, 2013
Mother's Day
Every mom I know kind of just wants to be alone on Mother's Day. But alas, as most things about being a mom, it's not really about us. :). So what Mother's Day usually entails is getting pampered by your family while a huge mess is created that you'll clean up later, but no matter what, we really do love it all. I prepared this year by full on cleaning the house the day before so I didn't stress about it. Great plan, btw!
This past month has been a doozy with me being stupidly sick with all sorts of different things and being full on miserable the entire time. I was FINALLY better and it was deemed that I would live, but you can bet I didn't feel the need for anything fancy for Mother's Day. Just a frigging break.
So my day consisted of sleeping til 6:30ish, moving myself to the couch where coffee was served to me repeatedly. We went for a family stroll, I sat on the couch some more and champagne was served to me. I took a nap. On the couch. Tom put the kids to bed while I drank champagne. On the couch. Then we had dinner. Guess where? I love my couch...
I loved every minute. And when someone whined, I said, "go talk to Daddy." That was fun too. Or funny...either way. :)
But the best quote came from my wonderful and long suffering husband:
"It maybe wasn't the best Mother's Day ever, but it sure beat your birthday!"
Indeed, my love. Indeed.
(Please excuse the shirt in the underwear. I was off duty.)
This past month has been a doozy with me being stupidly sick with all sorts of different things and being full on miserable the entire time. I was FINALLY better and it was deemed that I would live, but you can bet I didn't feel the need for anything fancy for Mother's Day. Just a frigging break.
So my day consisted of sleeping til 6:30ish, moving myself to the couch where coffee was served to me repeatedly. We went for a family stroll, I sat on the couch some more and champagne was served to me. I took a nap. On the couch. Tom put the kids to bed while I drank champagne. On the couch. Then we had dinner. Guess where? I love my couch...
I loved every minute. And when someone whined, I said, "go talk to Daddy." That was fun too. Or funny...either way. :)
But the best quote came from my wonderful and long suffering husband:
"It maybe wasn't the best Mother's Day ever, but it sure beat your birthday!"
Indeed, my love. Indeed.
(Please excuse the shirt in the underwear. I was off duty.)
Tuesday, May 7, 2013
Three Years
About three years ago, we were admitted to the hospital with James on April Fool's Day and finally came home on Cinco de Mayo. Hard to forget. ;). I remember driving home that afternoon, armed with tubes, formula, and feeding pumps, and just enough knowledge to make us dangerous. We really thought that we were down a very different road to recovery. Everything was going to fall into place! Once that tube was out, we were golden.
Wow. That...really wasn't the case. We had no idea how loooong this frigging road was. And bumpy. And dirty. Lol. And it's sort of funny that I seem to mark time by this first hospital stay, because we had a second stay this past summer that was just as bad, if not worse. But I guess we were pros by then, so it didn't have the same effect. That's kinda sad too.
Anyway, all that to say, we have learned so much, and not just about James's condition (cause we actually haven't learned that much about it....like what it is, go figure), but about ourselves and definitely other people. We have met so many incredible people during this journey. Turns out this crappy road is a well traveled one.
Yesterday I had a couple of dr appts down at UVA, with some wait time in between. So I found myself back in those halls where I used to drag James back and forth in a wagon, trying to navigate other people, other wagons, children, and the IV pole. I remember realizing in one moment that I was the person that people looked twice at, wondering what was wrong with their child, wondered were they going to make it, and felt genuinely sorry for. That never bothered me. Sometimes well placed pity is just what you need. It was a sorry situation. But I sat in what used to be a big lobby with a piano and now is just a hall with a lot of chairs and I watched the parents carting the IV poles for their kids to go hang in the cafeteria, or buying ridiculously expensive toys in the gift shop just to make things a little more interesting. And I listened in on phone calls to relatives updating on whatever condition. I watched a 9 day old preemie go home with happy parents. I saw a new mom laugh so hard she spit her drink on her new baby's head. And I sat with a perfectly healthy pregnant girl on her due date who was just praying to go into labor to get the giant baby out. Lol. So there's good and bad and in between.
We all feel sorry for ourselves in varying degrees at different times. But we are maybe usually more vocal about the stupid stuff. When you are in the trenches, people seem to find the positivity in really simple things. I remember recently someone was talking about those hours of dragging James around in a wagon, joking about making the best of things with a fake smile on my face. The thing was, it wasn't a fake smile. We hung out with the nice nurses and laughed and played and just lived a different kind of life for a while.
So I would encourage anyone who is feeling out of sorts, or discouraged, or even a bit wrapped up in their own world (aren't we all), to go sit in a high traffic area of a hospital and observe. It will give you so much perspective, and you never know, you may even find a way to help someone, even with just some nice words.
Then go home and have a drink.
Wow. That...really wasn't the case. We had no idea how loooong this frigging road was. And bumpy. And dirty. Lol. And it's sort of funny that I seem to mark time by this first hospital stay, because we had a second stay this past summer that was just as bad, if not worse. But I guess we were pros by then, so it didn't have the same effect. That's kinda sad too.
Anyway, all that to say, we have learned so much, and not just about James's condition (cause we actually haven't learned that much about it....like what it is, go figure), but about ourselves and definitely other people. We have met so many incredible people during this journey. Turns out this crappy road is a well traveled one.
Yesterday I had a couple of dr appts down at UVA, with some wait time in between. So I found myself back in those halls where I used to drag James back and forth in a wagon, trying to navigate other people, other wagons, children, and the IV pole. I remember realizing in one moment that I was the person that people looked twice at, wondering what was wrong with their child, wondered were they going to make it, and felt genuinely sorry for. That never bothered me. Sometimes well placed pity is just what you need. It was a sorry situation. But I sat in what used to be a big lobby with a piano and now is just a hall with a lot of chairs and I watched the parents carting the IV poles for their kids to go hang in the cafeteria, or buying ridiculously expensive toys in the gift shop just to make things a little more interesting. And I listened in on phone calls to relatives updating on whatever condition. I watched a 9 day old preemie go home with happy parents. I saw a new mom laugh so hard she spit her drink on her new baby's head. And I sat with a perfectly healthy pregnant girl on her due date who was just praying to go into labor to get the giant baby out. Lol. So there's good and bad and in between.
We all feel sorry for ourselves in varying degrees at different times. But we are maybe usually more vocal about the stupid stuff. When you are in the trenches, people seem to find the positivity in really simple things. I remember recently someone was talking about those hours of dragging James around in a wagon, joking about making the best of things with a fake smile on my face. The thing was, it wasn't a fake smile. We hung out with the nice nurses and laughed and played and just lived a different kind of life for a while.
So I would encourage anyone who is feeling out of sorts, or discouraged, or even a bit wrapped up in their own world (aren't we all), to go sit in a high traffic area of a hospital and observe. It will give you so much perspective, and you never know, you may even find a way to help someone, even with just some nice words.
Then go home and have a drink.
Thursday, April 25, 2013
I Get Knocked Down
But I get up again. Ur never gonna keep me down. I get knocked down...
Lol! Ok, some people reading this are shaking their heads (everyone), but I DO know that SOME people are singing along with me. And they'll continue, cause that song will NEVER LEAVE YOUR HEAD.
Where was I? Oh right.
So this past week was pretty much crap. James was sick, then Eve got sick, then I got sick. Like, bad sick. Fever, shaking, up all night with a throat that felt like I swallowed a steel brush type crap. Needless to say, we watched a ton of cartoons this week. To the point that at one point, James just asked if we could turn off the TV. Woops...
I have to say, I'm encouraged because this is the first significant illness James has had where he didn't lose a whole pound or more, and, well, we didn't end up in the hospital for a month...sooo...all in all, coulda been worse. In fact, through the worst of it, I was really encouraged. But then (!!) his body had to come off the 'roids. Holy shit, it was crazy. He had dark circles under his eyes, he was in a complete brain fog, he was moody, nauseous, stopped gaining weight, and really was just all around unpleasant to be around. At the same time, his sister was a compete pain in the butt and I was not my most stellar self. I realized also (cause I'm super smart) that because James' nose was so runny, he really wasn't getting the intranasal B12. This is super interesting because while we knew it was helping heal him and was a good thing, we weren't sure how long he would need it (treating symptom or cause). Evidently...pretty necessary right now. Cause we've seen a definite difference.
Once I clued into this, I double dosed him yesterday and today (cause deep down, I'm a doctor ---disclaimer---probably don't be like me). I was still fairly worried about the way he was looking, his energy levels, his attitude and appetite, until later this afternoon, when all of a sudden his dark circles disappeared, his cheeks had color and filled out, his eyes were bright, and he went wild. In a good way. :)
So onward and upward we go...again...
We are still worlds ahead of where we were not that long ago.
Aaaand...if you have a sick kid...stay the fuck away from us.
Lol. I'm just kidding. (I'm not kidding.)
Lol! Ok, some people reading this are shaking their heads (everyone), but I DO know that SOME people are singing along with me. And they'll continue, cause that song will NEVER LEAVE YOUR HEAD.
Where was I? Oh right.
So this past week was pretty much crap. James was sick, then Eve got sick, then I got sick. Like, bad sick. Fever, shaking, up all night with a throat that felt like I swallowed a steel brush type crap. Needless to say, we watched a ton of cartoons this week. To the point that at one point, James just asked if we could turn off the TV. Woops...
I have to say, I'm encouraged because this is the first significant illness James has had where he didn't lose a whole pound or more, and, well, we didn't end up in the hospital for a month...sooo...all in all, coulda been worse. In fact, through the worst of it, I was really encouraged. But then (!!) his body had to come off the 'roids. Holy shit, it was crazy. He had dark circles under his eyes, he was in a complete brain fog, he was moody, nauseous, stopped gaining weight, and really was just all around unpleasant to be around. At the same time, his sister was a compete pain in the butt and I was not my most stellar self. I realized also (cause I'm super smart) that because James' nose was so runny, he really wasn't getting the intranasal B12. This is super interesting because while we knew it was helping heal him and was a good thing, we weren't sure how long he would need it (treating symptom or cause). Evidently...pretty necessary right now. Cause we've seen a definite difference.
Once I clued into this, I double dosed him yesterday and today (cause deep down, I'm a doctor ---disclaimer---probably don't be like me). I was still fairly worried about the way he was looking, his energy levels, his attitude and appetite, until later this afternoon, when all of a sudden his dark circles disappeared, his cheeks had color and filled out, his eyes were bright, and he went wild. In a good way. :)
So onward and upward we go...again...
We are still worlds ahead of where we were not that long ago.
Aaaand...if you have a sick kid...stay the fuck away from us.
Lol. I'm just kidding. (I'm not kidding.)
Friday, April 19, 2013
A Day in the Life
Most of you know we raise grass fed beef. Know what you need when you decide not to feed grain? Um...grass. Know what grass is like in VA in the winter? Neither do I, cause you don't really see it.
Springtime is soooo exciting for everyone, especially grass eaters. The horses and the cows are thrilled beyond belief to have something besides hay. But, well...the grass is always greener and all that.
The other day a few cattle busted through a gate and I looked out the living room window to see a few steers munching around the lawn furniture. Of course this happens when I'm alone with the kids, who are sort of the opposite of helpful in these situations. I ran out to assess and hopefully chase everyone back in. Turns out, no one really cared if I chased them.
This is our senior bull. We call him Mr Moto. He's no Angus, but he is not...small. I had to physically push him through the gate. Lol. Too bad he's so scared of humans.
Anyway, I decided I couldn't herd the cattle through the gates because the rest of the cattle were standing right there. Eve and James and I (oh yeah, big helpers) tried to get them to follow the truck but, again, they just didn't care.
Then I remembered...our mower is in the shop and my parents are coming into town...
So I blocked off the driveway...
And let them work for a living.
It was a good day.
Springtime is soooo exciting for everyone, especially grass eaters. The horses and the cows are thrilled beyond belief to have something besides hay. But, well...the grass is always greener and all that.
The other day a few cattle busted through a gate and I looked out the living room window to see a few steers munching around the lawn furniture. Of course this happens when I'm alone with the kids, who are sort of the opposite of helpful in these situations. I ran out to assess and hopefully chase everyone back in. Turns out, no one really cared if I chased them.
This is our senior bull. We call him Mr Moto. He's no Angus, but he is not...small. I had to physically push him through the gate. Lol. Too bad he's so scared of humans.
Anyway, I decided I couldn't herd the cattle through the gates because the rest of the cattle were standing right there. Eve and James and I (oh yeah, big helpers) tried to get them to follow the truck but, again, they just didn't care.
Then I remembered...our mower is in the shop and my parents are coming into town...
So I blocked off the driveway...
And let them work for a living.
It was a good day.
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