I am glad we are on the same page.
Friday, February 17, 2012
Bionic Man
Today Charlie got measured and casted to become a bionic man. He's getting an RGO - a reciprocating gait orthotic - to help him stand and walk. We should have it in a month. This bracing is much more supportive, and much higher, than what he has now. It actually goes up around his trunk and helps him move his legs. Paul, who measured Charlie and casted him, said he hasn't done these for such a young before - but since Charlie is obviously ready mentally and physically, age is no reason to hold him back.
I am glad we are on the same page.
I am glad we are on the same page.
Thursday, February 16, 2012
Shunt Watch, 2012
Charlie has had a shunt to drain fluid from his brain since he was like 9 weeks old. Months ago, we ceased to think about this miraculous little brain-saver...it was working, there were no issues, and we put it out of our minds. Until this past weekend. For the first time ever, Charlie threw up, which for the millions of parents of typical children in this world signals a virus. For us, the first thing that comes to mind is not 24 hour bug, it's shunt failure. We were out to dinner and Charlie barfed at the table, again in the parking lot, again in the car...and by the time we got home I had spoken already to the neurosurgeon. She said she didn't suspect the shunt, because really the vomiting was Charlie's only symptom and a shunt failure bad enough to cause vomiting would usually also cause lethargy and extreme crankiness, among other things, none of which Charlie was experiencing. Charlie had no temperature, but as soon as we got home - things started arriving the "other way" too. This made things look less shunt related, because there is no correlation between shunt failure and poop-plosians. In the course of the night, I spoke with the pediatricians office, who advised me to keep him hydrated...and though the night was rough, by morning things were looking up. Charlie didn't toss his cookies all day Sunday, and ate/drank things that we didn't see again - either way - all day long.
He was fine Monday. He was fine Tuesday. He was fine Wednesday....and then he started getting the sniffles and didn't sleep Wednesday night except for when I was snuggling him (which means he ended up sleeping and I was up all night snuggling - totally worth it though I am TIRED). Then, this morning before going to get his wheelchair he was eating breakfast at school...and he threw up again.
I took him to the pediatrician after getting the wheelchair, and she said he looked great - no sign of shunt issue, she got a urine sample and dipped it - it looked perfect, but she sent it off for culture anyway just in case we have a UTI brewing (can also cause tummy issues). He's getting a cold but his ears are great and his lungs clear....so we go home.
And tonight, after not eating much dinner, Charlie threw up again. And so I am worried, and I am on shunt watch 2012. Either that or Chiari symptom watch, which is even less fun so I very much hope that is not the issue.
It's been so easy to forget Charlie has any medical issues other than some paralysis. I kiss his little behind the ear shunt bump all the time. But now some of those hidden worries are in the forefront of my mind, and it's really no fun.
He was fine Monday. He was fine Tuesday. He was fine Wednesday....and then he started getting the sniffles and didn't sleep Wednesday night except for when I was snuggling him (which means he ended up sleeping and I was up all night snuggling - totally worth it though I am TIRED). Then, this morning before going to get his wheelchair he was eating breakfast at school...and he threw up again.
I took him to the pediatrician after getting the wheelchair, and she said he looked great - no sign of shunt issue, she got a urine sample and dipped it - it looked perfect, but she sent it off for culture anyway just in case we have a UTI brewing (can also cause tummy issues). He's getting a cold but his ears are great and his lungs clear....so we go home.
And tonight, after not eating much dinner, Charlie threw up again. And so I am worried, and I am on shunt watch 2012. Either that or Chiari symptom watch, which is even less fun so I very much hope that is not the issue.
It's been so easy to forget Charlie has any medical issues other than some paralysis. I kiss his little behind the ear shunt bump all the time. But now some of those hidden worries are in the forefront of my mind, and it's really no fun.
Diagnosis, Not Definition
I started this post weeks ago after Charlie's clinic visit, and much has happened since, so I am updating. The first few paragraphs are the original post, and interspersed updates throughout.
But in the meantime, I have to get this off my chest. Yesterday (Remember, I wrote this weeks ago) was Charlie's "clinic" day. Most SB families know exactly what this is, but for anyone not a member of the club - it's a period of time where you go to one location and sit in the same room while a series of medical professionals rotates through. In theory, this is a time saver...you don't have to haul to different offices on different days, etc. You just sit and wait, and everyone comes to you.
In Charlie's case, he see's his orthopedic doctors and/or nurse practitioner, the nurse who sort of oversees kids with Spina Bifida, his urologist, the orthotist (for bracing) and potentially - but not this time - the neurologist. Maybe a nutritionist gets tossed in if needed, and some x-rays (yesterday it was hips). We got there at 8:30 am. We left around 1. At most, 15 minutes was spent interacting with actual people. The rest of the time, we waited in a room and Charlie got bored and annoyed. But that is not really the point of this post, although it does sometimes make me wonder if we should forego clinic for individual appointments, where I think more time would be spend with each patient because there is no rush to the next room full of parents and cranky kid. I digress.
UPDATE: We have pretty much decided to go the separate appointments route for a variety of reasons. I have not done anything about it - like cancel clinic yet - but I am likely going to. If I want to take Charlie to multiple doctors in one day, I think I will just make appointments that way.
The thing is, I feel as if we got nothing done.
Part of that is that I feel the environment is too generalized to kids with Spina Bifida. When you are pregnant with a child who is diagnosed with Spina Bifida, all the medical professionals are quick to say they can't give you specifics about the prognosis because ever case is so unique. Then you give birth, and now I hear all too often words like, "Well, that's Spina Bifida for you" or "That's so typical of Spina Bifida" when I am looking, instead, for solutions to issues my son, Charlie (the individual), is facing. Because Charlie, while dealing with Spina Bifida as a diagnosis, is not defined by those two words - and really no kid is. But, although every single medical professional who deals with Spina Bifida will say to you that each case is different, those same people are all too quick to write things off as typical.
I went to clinic to discuss a couple of specific things. Top on the list - more supportive bracing because I think Charlie is ready for it. He needs this to pull himself to stand on his own, not in his stander. I addressed this last time we were in the office, because I knew he would be ready about NOW. And I was told we would address it next time. As in YESTERDAY. I brought it up, and the first concern was that his heels are too tight, and that, before he can get the bracing to stand independently, he needs a little procedure to loosen them up. This is surgery, under anesthesia, and while it is a very simple procedure, I am not looking forward to it. But the point is - we should have done this procedure already. They knew a few months ago he would need this (because these things are fairly evident), but it didn't get addressed until yesterday, when I wanted to talk about standing.
UPDATE: I talked with a few people, including Charlie's PT and the PT who helped us get his wheelchair, and determined we wanted a second opinion. We got that second opinion, and as we hoped, he recommended no surgery for now. This was our desire because, although surgery is what we want when it is needed, we don't want to do it for no good reason at all. The second opinion doctor said that, with bracing and standing, Charlie's heel could loosen up on it's own and that, if it didn't, we could look at surgical options. But that, since it could loosen on it's own, he would suggest we give that a try.
Then they said, "That will put him closer to two, which is what we generally want to be at before we go with that kind of bracing." Oh? Oh? Because typical kids are pulling up to stand at less than one, and my kid is desperately trying to pull to stand and he can't, and standing and perspective are important for learning and development, so I really don't get the need to wait until he is two, or even two-ish. Here's what I think it is - two things: 1) We go to Shriner's where care is provided at no cost to families. This is great, but not the reason we go there - we go there because we thought/think they are the specialists in this field for kids. But, I think they hold off on some bracing in order to not have to replace it as often. 2) Because they have created a standard - everybody at two - and they are not looking at Charlie as an individual. This pisses me off, frankly. So, that didn't get done, and we got a date for a surgery I don't want Charlie to need, but which should have been done already if he did need it.
UPDATE: The second opinion ortho, who we might as well just start calling the new ortho, also wrote a prescription for bracing so Charlie can stand, as well as night AFO's which will theoretically help with the lengthening of the tendon in Charlie's heels while he sleeps. Also, and we have not determined whether or not we will discontinue use, he doesn't really hold much stock in the CHO brace Charlie wears at night for his hips. He thinks it doesn't make much of a difference one way or another, most of all because with kids who have SB a muscle tone issue is the problem and it can't be helped with a brace.
They also aren't discussing wheelchair yet - which doesn't matter because I have already ordered it and it will arrive next week - but still...isn't it time for independence? I didn't even bring it up. But again - I think, holding off on equipment until kids are older and bigger, which allows the equipment to last longer and also simply creating a standard for everyone instead of looking at individuals.
UPDATE: See posts from earlier today, we have the wheelchair and love it. He has figured out independence and now screams if I want to go a different direction than he does. He sure is almost two.
Let me say - I'm am totally not against judicious use of resources to make sure the most can be done with what's available. I am all for using resources in a most efficient manner. But not at a sacrifice of great benefit...only when the cost/benefit ratio is negligible.
Next, urology came in, looked at his chart, realized he was due for a test and ordered it, and left. Well, that test should have been ordered and done already and we should have been getting the results yesterday. But whatever. We waited hours to hear this - you need a test, now schedule it for another appointment, and then we will need a followup. Great.
UPDATE: i will likely just schedule this outside of Shriner's at the hospital
List item number two. I had a question for anyone who would listen about a wound care issue that I won't detail here, but I basically felt as if they said "Ah, it's SB - it's gonna be an issue." Um, no. That is not an answer for me. It will need to be resolved. His name is Charlie, not SB, and this has a solution somewhere, thanks.
UPDATE: We finally got the name of and visited a wound care doctor. Personality wise, he left much to be desired. He basically inferred we were somehow neglecting Charlie's care, which cause me great offense. I'm glad Ryan wasn't there, because he might have decked the guy. And, he gave us a cream (you guessed it, we already have the cream) and told us the best thing is "off loading" the area, or keeping the pressure off Charlie's tail. Hard to do with a little kid, but we are trying, and the wheelchair should help because he will sit properly and be stable. The last thing he said at the end of our visit was, and I kid you not: You know, you need to get this taken care of. People DIE from things like this. Did I need that? Really? That's why I am here, thankyouverymuch. Jerk. He has no kids and mostly deals with old people, so that's his excuse I guess.
Summary of clinic: Four and a half hours. 15 minutes of face time. A surgery I don't want, but which should have happened already, no bracing for standing/walking, no good advice for an issue we have, no urology answers, more appointments.
UPDATE: So we are likely going to individual appt. route for a variety of reasons, but most important - for individual attention. At clinic the doctors and nurses are rushing room to room like herds of cattle, and I think there is less individual attention for Charlie. This is the most important reason we shall go individual with out appointments. Plus - we have so many specialists not seen at clinic - gastro, neurosurgery...seems we could make better use of our time scheduling on our own is all.
But in the meantime, I have to get this off my chest. Yesterday (Remember, I wrote this weeks ago) was Charlie's "clinic" day. Most SB families know exactly what this is, but for anyone not a member of the club - it's a period of time where you go to one location and sit in the same room while a series of medical professionals rotates through. In theory, this is a time saver...you don't have to haul to different offices on different days, etc. You just sit and wait, and everyone comes to you.
In Charlie's case, he see's his orthopedic doctors and/or nurse practitioner, the nurse who sort of oversees kids with Spina Bifida, his urologist, the orthotist (for bracing) and potentially - but not this time - the neurologist. Maybe a nutritionist gets tossed in if needed, and some x-rays (yesterday it was hips). We got there at 8:30 am. We left around 1. At most, 15 minutes was spent interacting with actual people. The rest of the time, we waited in a room and Charlie got bored and annoyed. But that is not really the point of this post, although it does sometimes make me wonder if we should forego clinic for individual appointments, where I think more time would be spend with each patient because there is no rush to the next room full of parents and cranky kid. I digress.
UPDATE: We have pretty much decided to go the separate appointments route for a variety of reasons. I have not done anything about it - like cancel clinic yet - but I am likely going to. If I want to take Charlie to multiple doctors in one day, I think I will just make appointments that way.
The thing is, I feel as if we got nothing done.
Part of that is that I feel the environment is too generalized to kids with Spina Bifida. When you are pregnant with a child who is diagnosed with Spina Bifida, all the medical professionals are quick to say they can't give you specifics about the prognosis because ever case is so unique. Then you give birth, and now I hear all too often words like, "Well, that's Spina Bifida for you" or "That's so typical of Spina Bifida" when I am looking, instead, for solutions to issues my son, Charlie (the individual), is facing. Because Charlie, while dealing with Spina Bifida as a diagnosis, is not defined by those two words - and really no kid is. But, although every single medical professional who deals with Spina Bifida will say to you that each case is different, those same people are all too quick to write things off as typical.
I went to clinic to discuss a couple of specific things. Top on the list - more supportive bracing because I think Charlie is ready for it. He needs this to pull himself to stand on his own, not in his stander. I addressed this last time we were in the office, because I knew he would be ready about NOW. And I was told we would address it next time. As in YESTERDAY. I brought it up, and the first concern was that his heels are too tight, and that, before he can get the bracing to stand independently, he needs a little procedure to loosen them up. This is surgery, under anesthesia, and while it is a very simple procedure, I am not looking forward to it. But the point is - we should have done this procedure already. They knew a few months ago he would need this (because these things are fairly evident), but it didn't get addressed until yesterday, when I wanted to talk about standing.
UPDATE: I talked with a few people, including Charlie's PT and the PT who helped us get his wheelchair, and determined we wanted a second opinion. We got that second opinion, and as we hoped, he recommended no surgery for now. This was our desire because, although surgery is what we want when it is needed, we don't want to do it for no good reason at all. The second opinion doctor said that, with bracing and standing, Charlie's heel could loosen up on it's own and that, if it didn't, we could look at surgical options. But that, since it could loosen on it's own, he would suggest we give that a try.
Then they said, "That will put him closer to two, which is what we generally want to be at before we go with that kind of bracing." Oh? Oh? Because typical kids are pulling up to stand at less than one, and my kid is desperately trying to pull to stand and he can't, and standing and perspective are important for learning and development, so I really don't get the need to wait until he is two, or even two-ish. Here's what I think it is - two things: 1) We go to Shriner's where care is provided at no cost to families. This is great, but not the reason we go there - we go there because we thought/think they are the specialists in this field for kids. But, I think they hold off on some bracing in order to not have to replace it as often. 2) Because they have created a standard - everybody at two - and they are not looking at Charlie as an individual. This pisses me off, frankly. So, that didn't get done, and we got a date for a surgery I don't want Charlie to need, but which should have been done already if he did need it.
UPDATE: The second opinion ortho, who we might as well just start calling the new ortho, also wrote a prescription for bracing so Charlie can stand, as well as night AFO's which will theoretically help with the lengthening of the tendon in Charlie's heels while he sleeps. Also, and we have not determined whether or not we will discontinue use, he doesn't really hold much stock in the CHO brace Charlie wears at night for his hips. He thinks it doesn't make much of a difference one way or another, most of all because with kids who have SB a muscle tone issue is the problem and it can't be helped with a brace.
They also aren't discussing wheelchair yet - which doesn't matter because I have already ordered it and it will arrive next week - but still...isn't it time for independence? I didn't even bring it up. But again - I think, holding off on equipment until kids are older and bigger, which allows the equipment to last longer and also simply creating a standard for everyone instead of looking at individuals.
UPDATE: See posts from earlier today, we have the wheelchair and love it. He has figured out independence and now screams if I want to go a different direction than he does. He sure is almost two.
Let me say - I'm am totally not against judicious use of resources to make sure the most can be done with what's available. I am all for using resources in a most efficient manner. But not at a sacrifice of great benefit...only when the cost/benefit ratio is negligible.
Next, urology came in, looked at his chart, realized he was due for a test and ordered it, and left. Well, that test should have been ordered and done already and we should have been getting the results yesterday. But whatever. We waited hours to hear this - you need a test, now schedule it for another appointment, and then we will need a followup. Great.
UPDATE: i will likely just schedule this outside of Shriner's at the hospital
List item number two. I had a question for anyone who would listen about a wound care issue that I won't detail here, but I basically felt as if they said "Ah, it's SB - it's gonna be an issue." Um, no. That is not an answer for me. It will need to be resolved. His name is Charlie, not SB, and this has a solution somewhere, thanks.
UPDATE: We finally got the name of and visited a wound care doctor. Personality wise, he left much to be desired. He basically inferred we were somehow neglecting Charlie's care, which cause me great offense. I'm glad Ryan wasn't there, because he might have decked the guy. And, he gave us a cream (you guessed it, we already have the cream) and told us the best thing is "off loading" the area, or keeping the pressure off Charlie's tail. Hard to do with a little kid, but we are trying, and the wheelchair should help because he will sit properly and be stable. The last thing he said at the end of our visit was, and I kid you not: You know, you need to get this taken care of. People DIE from things like this. Did I need that? Really? That's why I am here, thankyouverymuch. Jerk. He has no kids and mostly deals with old people, so that's his excuse I guess.
Summary of clinic: Four and a half hours. 15 minutes of face time. A surgery I don't want, but which should have happened already, no bracing for standing/walking, no good advice for an issue we have, no urology answers, more appointments.
UPDATE: So we are likely going to individual appt. route for a variety of reasons, but most important - for individual attention. At clinic the doctors and nurses are rushing room to room like herds of cattle, and I think there is less individual attention for Charlie. This is the most important reason we shall go individual with out appointments. Plus - we have so many specialists not seen at clinic - gastro, neurosurgery...seems we could make better use of our time scheduling on our own is all.
We Just Keep Rolling
The wheelchair thing can be difficult for a parent to wrap their mind around. It was for us. It's easy to get caught up in the walking issue. Will he? Won't he? Shouldn't he? Why not? When we found out Charlie would be diagnosed with Spina Bifida, walking, for me, became a sort of holy grail. I really put a lot of weight on whether or not Charlie would walk functionally, and I was afraid he would not. At times I lost the big picture to focus on that tiny detail of walking. I wouldn't think of how healthy, smart, adorable, perfect, fabulous Charlie was - instead I wondered if he would walk.
Over the last 20 months, I have realized - and come to terms with - a few things.
One, Charlie probably won't walk functionally with current technology. He will probably (maybe) walk with lots of bracing, but it will be energy consuming and at a slower pace than his peers. The purpose of standing and walking for Charlie, at least for now, is not mobility as much as it is for bone strength and cardiovascular health. Maybe those exoskeleton walker things will become a real world possibility in Charlie's lifetime - maybe even in his youth - but for now, with what is readily available, we are pretty sure Charlie's best and quickest mode of regular transport will be a wheelchair.
Two, walking is not the holy grail. It's something most of us take for granted, but it's not the back and forth movement of two legs that matters, it's what that motion allows us. Independence. When we learn to walk as a baby, we are gaining independence to go where we want and when, to reach things that are on new levels, to stop relying on someone else for every little thing. I've found it's not walking that is the holy grail at all, it's independence. For Charlie, independence can start to emerge with a wheelchair in the same way another child gains independence on their own two legs.
Three, it's not about me. It was hard to come to terms with Charlie needing a wheelchair, but I realize it's not about what is hard for me, it's about what is best for Charlie. Having a wheelchair now, so he can be eye level with his peers and reach things and go places on his own free will - or wheel - is what's best for Charlie.
So, Charlie got his first brand new, all his, perfect fit wheelchair today. It's the TiLite Twist, and he is possibly the first kid in Florida to get this brand new model. It's red. It's (really) light. It's cute. It's fast. It has light up castor (caster?) wheels and super easy to roll tires. It was made by someone's hands to Charlie's specific measurements. And, because Charlie has been fortunate enough to have a practice chair at home and a Ready Racer at school, he is already a pro.
Charlie didn't feel his very best, which is another post all together, and he was tired because his nap was brief. Plus, he is refusing to smile for my camera these days. But believe me, when he was rolling we had some smiles. Video to come (soon).
Over the last 20 months, I have realized - and come to terms with - a few things.
One, Charlie probably won't walk functionally with current technology. He will probably (maybe) walk with lots of bracing, but it will be energy consuming and at a slower pace than his peers. The purpose of standing and walking for Charlie, at least for now, is not mobility as much as it is for bone strength and cardiovascular health. Maybe those exoskeleton walker things will become a real world possibility in Charlie's lifetime - maybe even in his youth - but for now, with what is readily available, we are pretty sure Charlie's best and quickest mode of regular transport will be a wheelchair.
Two, walking is not the holy grail. It's something most of us take for granted, but it's not the back and forth movement of two legs that matters, it's what that motion allows us. Independence. When we learn to walk as a baby, we are gaining independence to go where we want and when, to reach things that are on new levels, to stop relying on someone else for every little thing. I've found it's not walking that is the holy grail at all, it's independence. For Charlie, independence can start to emerge with a wheelchair in the same way another child gains independence on their own two legs.
Three, it's not about me. It was hard to come to terms with Charlie needing a wheelchair, but I realize it's not about what is hard for me, it's about what is best for Charlie. Having a wheelchair now, so he can be eye level with his peers and reach things and go places on his own free will - or wheel - is what's best for Charlie.
So, Charlie got his first brand new, all his, perfect fit wheelchair today. It's the TiLite Twist, and he is possibly the first kid in Florida to get this brand new model. It's red. It's (really) light. It's cute. It's fast. It has light up castor (caster?) wheels and super easy to roll tires. It was made by someone's hands to Charlie's specific measurements. And, because Charlie has been fortunate enough to have a practice chair at home and a Ready Racer at school, he is already a pro.
Charlie didn't feel his very best, which is another post all together, and he was tired because his nap was brief. Plus, he is refusing to smile for my camera these days. But believe me, when he was rolling we had some smiles. Video to come (soon).
 |
| Those are Mr. Gary's arms - he is with a local company called Custom Mobility. |
 |
| Ms. Lauren, the PT who helped us choose and order Charlie's chair, gave him Choo-Choo stickers. She knows the way into Charlie's good graces. |
Tuesday, February 14, 2012
Unsolved Mystery
We had a very sad thing happen at the Krouse house last night. Our beloved pup, Buckeye, passed away. He was the very sweetest dog, although he drove me insane sometimes. OK, most times. But we loved him. I can't prove it, but I think his passing suspicious...remember a few months ago the chicken incident? Let's just say it's not outside the realm of possibility that the words of "Ned" may ring true. That if Buckeye was in his neck of the woods again, he might not come home. Buckeye got out on Sunday, and he did come home, but by Monday night he was displaying symptoms that he had never before displayed, and were they attributed to the natural progression of things I would have expected them to come on slowly. I could be wrong, and the truth is I'll never know. Maybe I am just a conspiracy theorist.
Regardless, Buckeye joined our first dog, Libby (Cancer), our cat, Cali (old age), and our African Grey, Waffles (still a mystery), at the Rainbow Bridge. I hope they are playing happily.
Regardless, Buckeye joined our first dog, Libby (Cancer), our cat, Cali (old age), and our African Grey, Waffles (still a mystery), at the Rainbow Bridge. I hope they are playing happily.
Tuesday, January 17, 2012
Well, it just passed me by...
I just thought I would share something that, to me, is exciting and worth remembering. And it's something I barely remembered. Or, at least, it barely registered. The second anniversary of Charlie's diagnosis was just after Christmas. On that day I recalled the significance, but only because it was so close to Christmas. I really believe, had our anniversary been in, say, the middle of June, the date could have passed and I would have found myself thinking....hmmm...was it this day? Or that one?
Of course this is not because that date was not significant and life changing and terrifying. But simply because we are so busy with life, and the wonder that is Charlie, there was little time to dwell on those most terrifying moments. And, all I have to do is take a gander into those big baby blues my boy batts my way, and things are not nearly so scary after all!
Of course this is not because that date was not significant and life changing and terrifying. But simply because we are so busy with life, and the wonder that is Charlie, there was little time to dwell on those most terrifying moments. And, all I have to do is take a gander into those big baby blues my boy batts my way, and things are not nearly so scary after all!
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