I don't hate the Denis-Brown bar with the emphasis that I did in my last post. Several nights in a row of solid sleep for all of us, a really good nap yesterday, and E is starting to attempt to move around with the brace on. He can roll, pull onto his knees, and move into sitting with his feet strapped in. He is starting to crawl a few "steps" at a time outside of the brace - oh, how I love those 6 hours a day out of that thing! Hid daddy got him a dinosaur walker/riding toy for Christmas, and E even took a few steps behind it. E being willing to put weight on that foot is very exciting, because I worry about it getting stiff and about him being even more delayed. Bathtime is also better. He cried a little on day two, but not at all last night. So, we're getting into a rhythm. We're still sure about our decision to buy E the other brace, though. Life is better, but I can't imagine it not being even more better (how's that for grammar!) with him able to move his legs in his sleep. He'll be in that brace for sleeping for "several years" according to the doctor, so we might as well make him as comfortable as possible.
On the brighter side, we have a white day-after-chrismas, and after his nap, we're all heading outside to let him play in the snow. Merry Christmas!
Sunday, December 26, 2010
Thursday, December 23, 2010
I hate the Denis Brown bar
Nothing personal. I'm sure Dr. or Mr. Denis Brown was a very nice guy. I'm sure he was/is very nice and his bar and shoes combo has helped countless babies. My son is miserable. He refuses to even attempt to move with that thing on. He fell asleep last night sitting up. So, I suppose I exaggerated. He's willingly moved once in that thing - last night when he moved from his tummy to sitting. In which position he fell asleep. We had to go in and move him onto his tummy. This morning he had a small round red splotch on his good foot (not an uncommon issue, I know), so we've kept that spot covered with a bandaid today.
Today, the time out of the brace was great. E is figuring out how to move without the cast, although it's mostly a scoot with minimal pressure on the right leg. He pulled himself to stand a handful of times today, which I think is a good sign, although he's pretty much doing everything with only using his left foot. We played with two of the kitchen drawers that he's allowed in (they're stacked on top of each other and basically hold my plastic storage container collection). He stood in front of the drawers pushing them in and pulling them back, and I tried to help him put weight on that right foot when he leaned in that direction. We also did several stretches during the diaper changes that coincided with no brace. I didn't think stretching his foot was worth taking the stupid thing off and putting it back on. He positively wails any time we put anything on his foot - a sock, a regular shoe, and the shoe/bar combo. His foot is still so sensitive, and I think that the front of his ankle is raw from the prolonged time in a cast.
So I was very careful (I logged it) to make sure E spent exactly 18 hours in the bar and shoes today. No more, and no less. It was so sad to watch, though. He's such a mover, and until we actually got the cast off, all of my friends and I were almost taking bets as to how long it would take him to figure out walking. Now, however, he's awake and attempting to play for roughly 4 hours or so per day strapped to a bar. And he sits wherever I put him, making no effort to move, roll, or even shift his backside to another position on the carpet. I put him in sitting, he stays in sitting. I put him on his tummy, he stays on his tummy. And cries - he really doesn't like being on his tummy with the bar. We do it anyway, because he needs to spend time in the positions in order to get used to it, but today was very long, and both of us are exhausted.
In frequent conversations today, DH and I have agreed that we are going to pursue getting E a Dobbs bar. Our insurance won't cover it, as they'll have already gotten the bill for the DB bar (whether they'll pay for that or not is anyone's guess), but we both agree that giving E that little bit of movement within the bar will greatly increase his comfort, although I'm sure it isn't perfect and he'll need to get used to that one too. We're going to see DH's family next week, so it'll be the following week before we can get in to see a local orthotist I've worked with before. They've never ordered a Dobbs bar either, but they're willing to look into getting approval to carry it so they can order it for us. We'll pay out of pocket, but like I said, today sucked. I'm willing to do just about anything to A) prevent his CVT from recurring and B) make it easier on E in any way, shape, or form.
Bath time went as well as could be expected, I suppose. The sensitivity in E's foot made him miserable for the first 5 minutes or so, but DH stuck with it, being cheerful and passing E multiple toys and singing songs until he had our little boy laughing and having fun in the bath again. After the day I'd had, I admit I was hiding in the kitchen for the tears with my glass of wine.
I'm sure each day will be a bit easier. Tomorrow is Christmas Eve, so we'll have church and baking to keep both of us occupied. The bar schedule has him free and clear for church service, so that should be fun. Everyone in our church family is so excited to see him cast-free, and he loves it there. With all of the special music and lights, it should be a beautiful service to (hopefully) help me re-set my brain on what's important. If you are reading this, may God bless you during this special season. Merry Christmas!
Today, the time out of the brace was great. E is figuring out how to move without the cast, although it's mostly a scoot with minimal pressure on the right leg. He pulled himself to stand a handful of times today, which I think is a good sign, although he's pretty much doing everything with only using his left foot. We played with two of the kitchen drawers that he's allowed in (they're stacked on top of each other and basically hold my plastic storage container collection). He stood in front of the drawers pushing them in and pulling them back, and I tried to help him put weight on that right foot when he leaned in that direction. We also did several stretches during the diaper changes that coincided with no brace. I didn't think stretching his foot was worth taking the stupid thing off and putting it back on. He positively wails any time we put anything on his foot - a sock, a regular shoe, and the shoe/bar combo. His foot is still so sensitive, and I think that the front of his ankle is raw from the prolonged time in a cast.
So I was very careful (I logged it) to make sure E spent exactly 18 hours in the bar and shoes today. No more, and no less. It was so sad to watch, though. He's such a mover, and until we actually got the cast off, all of my friends and I were almost taking bets as to how long it would take him to figure out walking. Now, however, he's awake and attempting to play for roughly 4 hours or so per day strapped to a bar. And he sits wherever I put him, making no effort to move, roll, or even shift his backside to another position on the carpet. I put him in sitting, he stays in sitting. I put him on his tummy, he stays on his tummy. And cries - he really doesn't like being on his tummy with the bar. We do it anyway, because he needs to spend time in the positions in order to get used to it, but today was very long, and both of us are exhausted.
In frequent conversations today, DH and I have agreed that we are going to pursue getting E a Dobbs bar. Our insurance won't cover it, as they'll have already gotten the bill for the DB bar (whether they'll pay for that or not is anyone's guess), but we both agree that giving E that little bit of movement within the bar will greatly increase his comfort, although I'm sure it isn't perfect and he'll need to get used to that one too. We're going to see DH's family next week, so it'll be the following week before we can get in to see a local orthotist I've worked with before. They've never ordered a Dobbs bar either, but they're willing to look into getting approval to carry it so they can order it for us. We'll pay out of pocket, but like I said, today sucked. I'm willing to do just about anything to A) prevent his CVT from recurring and B) make it easier on E in any way, shape, or form.
Bath time went as well as could be expected, I suppose. The sensitivity in E's foot made him miserable for the first 5 minutes or so, but DH stuck with it, being cheerful and passing E multiple toys and singing songs until he had our little boy laughing and having fun in the bath again. After the day I'd had, I admit I was hiding in the kitchen for the tears with my glass of wine.
I'm sure each day will be a bit easier. Tomorrow is Christmas Eve, so we'll have church and baking to keep both of us occupied. The bar schedule has him free and clear for church service, so that should be fun. Everyone in our church family is so excited to see him cast-free, and he loves it there. With all of the special music and lights, it should be a beautiful service to (hopefully) help me re-set my brain on what's important. If you are reading this, may God bless you during this special season. Merry Christmas!
Wednesday, December 22, 2010
Not as happy post-cast as I thought I'd be
It was awesome to get the cast off - don't get me wrong. However, in his (apparently) typical fashion, our doctor informed us today that E would be in braces for "several years" with no specification or estimate of how many. Also, when I asked about the Dobbs bar with the hinge, Dr. H seemed a little put off that I would even make that request and he informed me that we'd be getting a solid bar with no other option because that was the only one they carried. The only one they carry is the Denis Brown bar (curved, but not hinged). So, my super mobil son who hates to have his feet restrained is currently sitting in his crib (exhausted) but not lying down to sleep. I'm impressed that he has so quickly figured out how to move to a sit with his feet bound together, and he has (for now) stopped crying. I'm sure he'd be having the same (or similar) issues with learning how to sleep even if we had the bar I wanted, but it's easy to sit here and blame the doctor. Maybe not fair, but easy. He may not have much input into what specific bars/shoes their clinic carries, because it is a large hospital system. I have a hard time believing that, as he's the head of the department, but I should give him the benefit of the doubt. Maybe I will have an easier time with that tomorrow.
So we've come up with a tentative schedule, as he gets to be out of the brace for 6 hours a day during the next 4 weeks, so I have a game plan for tomorrow. After we were fit with the DB bar and shoes, we went over to the hospital's pediatric PT department where we waited for an hour for the skeleton crew department to (thankfully) fit us in to have a mold taken for E's daytime brace. He's going to have a custom made ankle foot orthosis (AFO) to wear during the day, so he'll only have to be in the bar at night and during his nap. I think that will be a lot easier for him to get used to than this thing (insert me making a face).
It's been interesting watching E figure out how to move without the cast. He's very ginger with it, as I'm sure it feels very strange to have it so exposed. He's not a fan of crawling or putting weight on the right knee, and he got frustrated easily this afternoon. He's used to having the weight of the cast as a counter balance when he's sitting and shifting around, so he spent a lot of time falling over backwards. Which, fortunately, he thought was hilarious. He did not attempt to pull to stand at all today, and the times I put him in standing he primarily stayed on his left foot. The few times he attempted to use the right foot to balance, the right knee collapsed and he fell to the right. Not as happy about those falls, but his knee is so weak from lack of use for 5 months. It will take some time, I'm sure.
His skin on that right leg is a mess. The back of his calf is pretty splotchy, and he was not a fan of the washcloth being applied to it either time I attempted. He was more tolerant of the lotion, and I applied lotion to his leg at every diaper change. Given his history of eczema, I bought some Aveeno baby eczema last week to have on hand. We did not attempt a bath tonight, as we decided he'd had a rough enough day already. We'll attempt the bath tomorrow, and I'll post later this week to document how that goes.
In the days leading up to the celebration of Christ's birth, I am trying to keep in my head how thankful I am and how blessed we are. In so many ways, my family is blessed beyond measure. This journey is keeping us from getting too caught up in the excess and commercialization of the holiday, so for that I am also thankful.
So we've come up with a tentative schedule, as he gets to be out of the brace for 6 hours a day during the next 4 weeks, so I have a game plan for tomorrow. After we were fit with the DB bar and shoes, we went over to the hospital's pediatric PT department where we waited for an hour for the skeleton crew department to (thankfully) fit us in to have a mold taken for E's daytime brace. He's going to have a custom made ankle foot orthosis (AFO) to wear during the day, so he'll only have to be in the bar at night and during his nap. I think that will be a lot easier for him to get used to than this thing (insert me making a face).
It's been interesting watching E figure out how to move without the cast. He's very ginger with it, as I'm sure it feels very strange to have it so exposed. He's not a fan of crawling or putting weight on the right knee, and he got frustrated easily this afternoon. He's used to having the weight of the cast as a counter balance when he's sitting and shifting around, so he spent a lot of time falling over backwards. Which, fortunately, he thought was hilarious. He did not attempt to pull to stand at all today, and the times I put him in standing he primarily stayed on his left foot. The few times he attempted to use the right foot to balance, the right knee collapsed and he fell to the right. Not as happy about those falls, but his knee is so weak from lack of use for 5 months. It will take some time, I'm sure.
His skin on that right leg is a mess. The back of his calf is pretty splotchy, and he was not a fan of the washcloth being applied to it either time I attempted. He was more tolerant of the lotion, and I applied lotion to his leg at every diaper change. Given his history of eczema, I bought some Aveeno baby eczema last week to have on hand. We did not attempt a bath tonight, as we decided he'd had a rough enough day already. We'll attempt the bath tomorrow, and I'll post later this week to document how that goes.
In the days leading up to the celebration of Christ's birth, I am trying to keep in my head how thankful I am and how blessed we are. In so many ways, my family is blessed beyond measure. This journey is keeping us from getting too caught up in the excess and commercialization of the holiday, so for that I am also thankful.
Monday, December 20, 2010
On the countdown...
Who am I kidding? I've been counting for about the last 10 days. We are inside of 2 days from when E gets his cast off. Less than 2 days before he can wear 2 shoes. Less than 2 days before I can GIVE HIM A BATH!!! Can you guess what I'm most looking forward to? We do a nightly sponge bath, but he loved his baths before the casting began. I know it will take some time for him to get used to it again, but having a way to wash his hair daily will be soooooo nice. Sponge baths do not lend themselves well to washing a 1 year-old's hair. We do wash his hair in the sink, but he hates it, so we put it off as long as possible. As a result, he goes 2 weeks in between having his hair clean, and it's driving me nuts. He thinks it's very cute to take (insert type of food)-covered hands and put both of them on his head and grab handfuls of hair. And it is cute. But it's also very difficult to get all of the food bits out of his hair. Am I obsessing? Probably.
I do know we're going to have issues when the cast comes off. His leg has been encased in a cast for all but 2 days of the last 5 months, so there will be sensory issues. He's not going to like things touching that leg and foot, probably including water. He's not put weight on his full foot, only his toes, for most of the 5 months. He was not pulling to stand consistently before the cast - that happened later. He does not pull to stand in the normal pattern - he barely uses his left (uncasted) leg at all. Mostly, I'd say E has the most well developed upper body strength of just about any 14 month old out there, because he only uses his arms to pull to stand. I worry a bit about how his spine has developed in the last few months, since he's been doing quite a bit of one legged standing and cruising just using his right toes in a pretty big developmental stage, but that's an issue for later. Not to mention there really wasn't any way around that, short of picking up the diagnosis earlier. But again, nothing we can do about that now. Then there are the braces.
He'll have 2, like I said last time. They'll take a mold of E's foot and (probably) lower leg Wednesday morning after the cast comes off. He's not going to like that, but he doesn't like any of the casting procedures, so that's nothing new. They'll send that mold and create a brace for E to wear during the daytime, and we'll probably get that back in a few weeks. The part that worries me more is the nighttime brace. He'll be in a "club foot type brace." That was what Dr. H's nurse said. It will have 2 shoes and a bar, but I didn't know to ask what type. Apparently there are multiple kinds of shoes and bars in various combinations. I've been advised to get a dobbs bar with ponsetti or mitchell shoes. The Dobbs bar is hinged, which will allow movement at night (a big plus with a 14 month-old, I'm sure) and the Mitchell shoes appear (online) to be a set of sandals with straps, which I can also see as being less offensive. He's not going to like bracing at night, regardless, and I am borrowing worry to stress over that in advance, but I am who I am. I am gearing myself up to argue for the moveable bar and sandal set-up, but I'm hoping that is the type that the doctor recommends, saving me a little bit of stress. Who knows - I will see on Wednesday!
I do know we're going to have issues when the cast comes off. His leg has been encased in a cast for all but 2 days of the last 5 months, so there will be sensory issues. He's not going to like things touching that leg and foot, probably including water. He's not put weight on his full foot, only his toes, for most of the 5 months. He was not pulling to stand consistently before the cast - that happened later. He does not pull to stand in the normal pattern - he barely uses his left (uncasted) leg at all. Mostly, I'd say E has the most well developed upper body strength of just about any 14 month old out there, because he only uses his arms to pull to stand. I worry a bit about how his spine has developed in the last few months, since he's been doing quite a bit of one legged standing and cruising just using his right toes in a pretty big developmental stage, but that's an issue for later. Not to mention there really wasn't any way around that, short of picking up the diagnosis earlier. But again, nothing we can do about that now. Then there are the braces.
He'll have 2, like I said last time. They'll take a mold of E's foot and (probably) lower leg Wednesday morning after the cast comes off. He's not going to like that, but he doesn't like any of the casting procedures, so that's nothing new. They'll send that mold and create a brace for E to wear during the daytime, and we'll probably get that back in a few weeks. The part that worries me more is the nighttime brace. He'll be in a "club foot type brace." That was what Dr. H's nurse said. It will have 2 shoes and a bar, but I didn't know to ask what type. Apparently there are multiple kinds of shoes and bars in various combinations. I've been advised to get a dobbs bar with ponsetti or mitchell shoes. The Dobbs bar is hinged, which will allow movement at night (a big plus with a 14 month-old, I'm sure) and the Mitchell shoes appear (online) to be a set of sandals with straps, which I can also see as being less offensive. He's not going to like bracing at night, regardless, and I am borrowing worry to stress over that in advance, but I am who I am. I am gearing myself up to argue for the moveable bar and sandal set-up, but I'm hoping that is the type that the doctor recommends, saving me a little bit of stress. Who knows - I will see on Wednesday!
Wednesday, December 1, 2010
Braces!
Well, I called the doctor yesterday, because E has managed to break a hole in the heel of his cast after only 2 weeks. As we're out of town next week, if we needed to make another trek up to Chapel Hill for cast repair, it needed to happen this week. Fortunately, Dr. H's nurse assured me that a hole in the heel is not cause for repair, and she said that we could just patch it at home with Duct Tape. Feeling pretty good about the decision to take E's formal 1 year shots and our family pics late last month, as I'm sure the bright green cast would look fabulous in the pics complete with a silver Duct Tape patch! While I had her on the phone though, I asked if she could give me any info on what to expect regarding E's brace after casting. Dr. H had not gone into much detail about what we would be dealing with, and boy, am I glad I asked!
Apparently, after the cast comes off we'll be passed along to the PT (physical therapy) department to have a mold taken of E's foot and lower leg. That mold will be sent off and an AFO (ankle-foot orthosis) will be fabricated to be worn in his shoe during the day. It will take a few weeks to get it back, so we'll likely get that around mid-January. However, we'll go home that day with a ponsetti-type brace. For those of you reading who've seen pictures of what the procedure is for clubfoot kids, you may recognize these as the brace that is two shoes with a metal bar connecting them. He'll start that night (Merry Christmas, indeed) wearing the ponsetti brace at night when he's sleeping. I had been so optimistic that we were going to have a daytime only brace. I can't begin to describe how disappointed I was about the nighttime brace. I don't operate well on lack of sleep, and the idea of "looking forward" to having to put my son in a brace he's not going to like (who would) and expecting a 14 month-old to fall asleep that way is not appealing. I know he'll get used to it, as I've quickly come to realize that he's much more resilient than I am. I just hate listening to him cry, and there isn't going to be any getting around this thing. He has to wear it. We can't risk re-occurrence. We'll do what we need to do. However, this does somewhat put a damper on how excited I was for the cast removal. He's used to the cast. The brace is going to be an adjustment. Disappointing. Not what I was expecting from my reading, and I'm really more disappointed than I was in Dr. H's lack of communication skills. He's a good doctor, and from what we've experienced and heard, he's a good surgeon. Communication? Not his forte. Grrr.
Apparently, after the cast comes off we'll be passed along to the PT (physical therapy) department to have a mold taken of E's foot and lower leg. That mold will be sent off and an AFO (ankle-foot orthosis) will be fabricated to be worn in his shoe during the day. It will take a few weeks to get it back, so we'll likely get that around mid-January. However, we'll go home that day with a ponsetti-type brace. For those of you reading who've seen pictures of what the procedure is for clubfoot kids, you may recognize these as the brace that is two shoes with a metal bar connecting them. He'll start that night (Merry Christmas, indeed) wearing the ponsetti brace at night when he's sleeping. I had been so optimistic that we were going to have a daytime only brace. I can't begin to describe how disappointed I was about the nighttime brace. I don't operate well on lack of sleep, and the idea of "looking forward" to having to put my son in a brace he's not going to like (who would) and expecting a 14 month-old to fall asleep that way is not appealing. I know he'll get used to it, as I've quickly come to realize that he's much more resilient than I am. I just hate listening to him cry, and there isn't going to be any getting around this thing. He has to wear it. We can't risk re-occurrence. We'll do what we need to do. However, this does somewhat put a damper on how excited I was for the cast removal. He's used to the cast. The brace is going to be an adjustment. Disappointing. Not what I was expecting from my reading, and I'm really more disappointed than I was in Dr. H's lack of communication skills. He's a good doctor, and from what we've experienced and heard, he's a good surgeon. Communication? Not his forte. Grrr.
Friday, November 26, 2010
Another late entry
Sorry about that! Two new teeth and life with a 13 month old.
So we went for our appointment on Tuesday, and E had his x-rays with the cast still on. He wasn't terribly pleased with laying on the table, but he tolerated it OK. Dr. H was very happy with the position of the bones in E's foot, and the iPhone apps did help the protesting a little bit with the cast removal. Not so much with the re-casting. The pin coming out was super weird, and I'm not sure I'm buying what they're selling that it "just feels like getting a shot," but it's out and we have OUR VERY LAST CAST! Hooray! And, I talked the doc into letting E out of his cast before Christmas. I know there'll be issues with the sensitivity, and I'm not sure what the splint-wearing schedule will be, but as of 12/22, we are out of casts!!! Hope everyone had a fabulous Thanksgiving - I know I've so much to be thankful for.
So we went for our appointment on Tuesday, and E had his x-rays with the cast still on. He wasn't terribly pleased with laying on the table, but he tolerated it OK. Dr. H was very happy with the position of the bones in E's foot, and the iPhone apps did help the protesting a little bit with the cast removal. Not so much with the re-casting. The pin coming out was super weird, and I'm not sure I'm buying what they're selling that it "just feels like getting a shot," but it's out and we have OUR VERY LAST CAST! Hooray! And, I talked the doc into letting E out of his cast before Christmas. I know there'll be issues with the sensitivity, and I'm not sure what the splint-wearing schedule will be, but as of 12/22, we are out of casts!!! Hope everyone had a fabulous Thanksgiving - I know I've so much to be thankful for.
Sunday, November 14, 2010
Gearing up for the holidays...
and post op cast removal time! I'm pretty excited and nervous about Tuesday's appointment. I'm excited that we're one step closer to no-cast land, but I'm nervous about the pin removal process. My neighbor's 20 year-old son had a pin put in his wrist when he broke it last year, and they removed it in the office, and he said it wasn't bad - just felt weird - because they numbed it down pretty good. That makes me feel a little better, but not a lot. The idea of them pulling a pin out of my son's bones in his foot while he's awake makes me cringe. My hubby keeps reminding me that E is a lot stronger than we are, and he's handled everything the doctors have thrown at him much better than we have.
It's kind of funny to watch E scurry around the house these days. He's finally figured out how to crawl with his belly off of the ground, even with a cast on (see hubby's statement above), and that's his preferred method of travel when crawling around on the grass outside. When dealing with grass, apparently, the less body parts that have to touch the offending substance, the better. He's also cruising everywhere. I looked up two days ago to see that he'd walked himself around the toy cabinet to the sliding glass doors and halfway across the glass doors just using the doors for stability. As I write, he's halfway across the back of the couch, although you can tell he doesn't feel as secure cruising along the back of the couch (I think because the leather gives a bit more than the glass does). The cast sliding on the laminate floors is bothering him less and less, so I'm still feeling pretty comfortable in my statement that he's likely going to be walking before the cast comes off. If he doesn't, it won't be for lack of trying on his part, anyway!
Still our only issues with this cast is the callous on his second toe. The serial casts were longer to protect his toes from the crawling around and pulling to stand. I'm not sure what the thought process was in making it shorter. His foot is in a different position though, so that may play a part in the decision on how to cast. We'll find out on Tuesday!
It's kind of funny to watch E scurry around the house these days. He's finally figured out how to crawl with his belly off of the ground, even with a cast on (see hubby's statement above), and that's his preferred method of travel when crawling around on the grass outside. When dealing with grass, apparently, the less body parts that have to touch the offending substance, the better. He's also cruising everywhere. I looked up two days ago to see that he'd walked himself around the toy cabinet to the sliding glass doors and halfway across the glass doors just using the doors for stability. As I write, he's halfway across the back of the couch, although you can tell he doesn't feel as secure cruising along the back of the couch (I think because the leather gives a bit more than the glass does). The cast sliding on the laminate floors is bothering him less and less, so I'm still feeling pretty comfortable in my statement that he's likely going to be walking before the cast comes off. If he doesn't, it won't be for lack of trying on his part, anyway!
Still our only issues with this cast is the callous on his second toe. The serial casts were longer to protect his toes from the crawling around and pulling to stand. I'm not sure what the thought process was in making it shorter. His foot is in a different position though, so that may play a part in the decision on how to cast. We'll find out on Tuesday!
Tuesday, November 2, 2010
Halfway through first postop cast
And things are going as smoothly as possible. The cast doesn't seem to bother him in the slightest, and I'm actually not going to be surprised if he takes his first steps with the cast on. He sure is trying, anyway. The only issues we seem to be having is he's developed a callous on his second toe from dragging it around under the cast. Well, that and he's peed on the darned thing twice now. But, it doesn't seem to smell too badly at this point LOL. Our first postop appointment is scheduled for November 16th, and we'll know more then. In the meantime, I give my standard answer to the startled comments from by-standers when we're out - yes, I did tell him to stay off of the Harley, and he just didn't listen...boys will be boys, after all :-). His sleep is back to normal - 11 hours + per night. His eating is normal - we've transitioned to milk, but he's not processing that well, so we've shifted over to lactaid for a few months to give his tummy a little more time to be able to process the lactose. Typical 12 month-old issues here. Plus a heavy cast.
Sunday, October 17, 2010
Another busy week...
So what else is new, being the parent of a very active now 1 year old (OMG - I can't believe he's already one!!!). I missed last week's post, mostly because without the weekly trips to UNC (YAY!) I forget what day it is. So, the first few days after surgery we took pretty slowly, and E napped a lot - probably because he was not sleeping solidly at night. A lot of crying in his sleep, waking and not being able to go back to sleep, and mommy not sleeping much at all. Which is also contributing to my confusion about what day it is. He's finally starting to settle down again at night, with only an occasional waking or crying out at night enough to wake me up, so I'm starting to feel a little more back to normal. He's been fine (aside from the sleep thing). By day two he was back to slamming his cast around for the noise it makes. By day three he was back to pulling himself to stand and jetting all over the place as fast as he could crawl. A week after surgery, he actually put enough weight on his foot to transition from one piece of furniture to another, so I honestly think he's going to take his first steps in this cast.
We didn't give him any of his prescription pain meds after the first day. He didn't seem uncomfortable at all on nothing but generic Tylenol, so we left it at that. We've made his appointment for the cast and pin removal, and it's a month away. In the meantime, we're contemplating weaning off the paci. Pray for us...
We didn't give him any of his prescription pain meds after the first day. He didn't seem uncomfortable at all on nothing but generic Tylenol, so we left it at that. We've made his appointment for the cast and pin removal, and it's a month away. In the meantime, we're contemplating weaning off the paci. Pray for us...
Thursday, October 7, 2010
Surgery done!
Praise God! We're done with the worst part (I hope - I know there's always a chance of recurrence). We got E to the hospital this morning at 630, and we were in a room meeting the nursing staff by 7 am. The anesthesiologist talked us out of me going back with him - she said that as a mom herself, it was not a good idea to watch your child basically fight off a nap before surgery. It helped that she whipped out her iPhone (E loves those things - he is constantly trying to get ahold of mom or dad's), loaded a kiddie app (after she wiped it down with antisceptic), and lured him into her arms with the thing. He didn't so much as look back at us as she carted him off. He'd started to get fussy, realizing that he'd missed out on breakfast, but that was gone with the bribe. I'm not sure how I felt about being "replaced" by a smart phone, but he was happy, so whatever.
The resident came to talk to us a little over 45 minutes later. They were able to do the minimal procedures - pinning the naviculotalar joint without a big incision and the achilles tenotomy without a big incision - followed by casting his foot into a flexed position, which meant we were going to be able to take him home today. About 15-20 minutes later, they came to get one of us to go to him in recovery. He took one look at me and burst into tears, although after giving him his pain meds and unplugging him from most of his lines, we decided the constant tears were from hunger. My hubby went down to the car to get his formula (which we almost didn't bring - the directions only said to bring a sippy cup or bottle), and we eyeballed the amount of water to mix in with the formula, and he did end up drinking most of the 8 ounces, so that helped.
We left the hospital by 10 am, and loaded into the car for the trip home. He was able to nap some in the car, but I think when he woke up he was sore - throat, foot, still with the teeth, and did I mention yesterday's onset of the first full-fledged case of diaper rash? It was mostly healed, but still present. We picked up his prescriptions (oxycontin and colace - totally are not going to hurry on that one with all of the poopy diapers yesterday which contributed to the diaper rash), and we decided he'll get his oxy and tylenol in 2 hour intervals for today, and then we'll start to stretch it some tomorrow if he's doing ok. The oxy won't last much beyond that, but I don't expect he'll need it all. He was already doing much better by bedtime - playing some on the floor and putting himself to sleep for bed.
So now I'm relaxing on the couch watching hockey (GO PENS!) and the baby asleep on the video monitor. Hubby picked up Thai take out as a treat for us, and we're each enjoying a glass of wine. For as scary as this morning started out, it's ending up on a pretty good note. Well, the Flyers are currently winning, but there's still time for them to turn that around. G'night!
The resident came to talk to us a little over 45 minutes later. They were able to do the minimal procedures - pinning the naviculotalar joint without a big incision and the achilles tenotomy without a big incision - followed by casting his foot into a flexed position, which meant we were going to be able to take him home today. About 15-20 minutes later, they came to get one of us to go to him in recovery. He took one look at me and burst into tears, although after giving him his pain meds and unplugging him from most of his lines, we decided the constant tears were from hunger. My hubby went down to the car to get his formula (which we almost didn't bring - the directions only said to bring a sippy cup or bottle), and we eyeballed the amount of water to mix in with the formula, and he did end up drinking most of the 8 ounces, so that helped.
We left the hospital by 10 am, and loaded into the car for the trip home. He was able to nap some in the car, but I think when he woke up he was sore - throat, foot, still with the teeth, and did I mention yesterday's onset of the first full-fledged case of diaper rash? It was mostly healed, but still present. We picked up his prescriptions (oxycontin and colace - totally are not going to hurry on that one with all of the poopy diapers yesterday which contributed to the diaper rash), and we decided he'll get his oxy and tylenol in 2 hour intervals for today, and then we'll start to stretch it some tomorrow if he's doing ok. The oxy won't last much beyond that, but I don't expect he'll need it all. He was already doing much better by bedtime - playing some on the floor and putting himself to sleep for bed.
So now I'm relaxing on the couch watching hockey (GO PENS!) and the baby asleep on the video monitor. Hubby picked up Thai take out as a treat for us, and we're each enjoying a glass of wine. For as scary as this morning started out, it's ending up on a pretty good note. Well, the Flyers are currently winning, but there's still time for them to turn that around. G'night!
Wednesday, October 6, 2010
Surgery Tomorrow...
It happened rather quickly at yesterday's appointment - the fluoroscope looked good, so Dr. Henderson decided for us to move forward to surgery....on Thursday. Less than 48 hours of turnaround. It might be some sort of record (probably not), and it feels so quick, but I'm guessing that's just less time for me to develop a stomach ulcer worrying about general anesthesia. He's a healthy baby, so the risks are low. But the risks are there, and I'll be frank here, it scares the daylights out of me. Never have I prayed over my little boy more constantly than I have these last 2 days. I'm comforted by the prayers I know are going out for him from all of our friends and family, and the fact that I know he's in God's hands.
He's been out of his cast now since about 8:15 yesterday morning, and it's been a little funny to watch him try to figure out what to do with his leg. He figured out the bending the knee pretty quickly, and almost as quickly, he discovered that banging that foot against hard things A) doesn't make the cool sound anymore and B) doesn't feel very good. His skin still doesn't look great, but after the bath last night (that he was initially rather vocally opposed to) and the time out of the cast, it's better. They wanted to give his skin time to heal prior to the procedure (that word sounds so much nicer than surgery) tomorrow. We have to wash his whole body chin to toes in a bottle of antibacterial soap both tonight and tomorrow morning (that should be fun - anyone up for a 6 am bath with a 1 year old?), and of course, nothing to eat after midnight and nothing but clear liquids until 4:30 am. Nothing at all after that, which should be interesting. I think we're going through our 12 month growth spurt a week early, because he's eating almost more than I do at each meal. Then we check in at 6:30, with the procedure (yup. I like that word better.) at 7:30. He's the first one on the docket, and Dr. H was optimistic that it could take as little as 20 minutes, although he said it could take as long as 2 hours if they have to be more invasive. If it's shorter, we go home tomorrow. If it's longer, we stay in the hospital until Friday.
So, that's it. We're packed up, as we're staying with a cousin tonight whose house is only 10 minutes from the hospital, which should help tomorrow morning. Not that I'll sleep much tonight anyway.
He's been out of his cast now since about 8:15 yesterday morning, and it's been a little funny to watch him try to figure out what to do with his leg. He figured out the bending the knee pretty quickly, and almost as quickly, he discovered that banging that foot against hard things A) doesn't make the cool sound anymore and B) doesn't feel very good. His skin still doesn't look great, but after the bath last night (that he was initially rather vocally opposed to) and the time out of the cast, it's better. They wanted to give his skin time to heal prior to the procedure (that word sounds so much nicer than surgery) tomorrow. We have to wash his whole body chin to toes in a bottle of antibacterial soap both tonight and tomorrow morning (that should be fun - anyone up for a 6 am bath with a 1 year old?), and of course, nothing to eat after midnight and nothing but clear liquids until 4:30 am. Nothing at all after that, which should be interesting. I think we're going through our 12 month growth spurt a week early, because he's eating almost more than I do at each meal. Then we check in at 6:30, with the procedure (yup. I like that word better.) at 7:30. He's the first one on the docket, and Dr. H was optimistic that it could take as little as 20 minutes, although he said it could take as long as 2 hours if they have to be more invasive. If it's shorter, we go home tomorrow. If it's longer, we stay in the hospital until Friday.
So, that's it. We're packed up, as we're staying with a cousin tonight whose house is only 10 minutes from the hospital, which should help tomorrow morning. Not that I'll sleep much tonight anyway.
Tuesday, October 5, 2010
Googled Surgery Information Tonight
In the theory that the more information I have, the better off E will be, I googled CVT surgery tonight. I've put it off, honestly, because it freaks me out. I'm a physical therapist, but I work with geriatrics - complete opposite end of the spectrum so not much help, aside from the fact that I can "speak the language" of the medical professionals. I can decipher medical journals, but that isn't always a good thing, which is why I've postponed doing this. I already know the risks involved in general anesthesia. I don't need to be told that there's a risk that my son might not wake up. I have to focus on the positives - if we don't do this now, it will be harder on him later. If we don't do this at all, he will never walk normally or without pain. Would he thank us for that? Probably not. We aren't doing this for the look of his foot - he is perfect to us. My feet are bad, and they aren't bad like his, but I have foot pain frequently and I have to wear rigid orthotics in my shoes for any impact sports/activities and soft orthotics for every day wear.
The nice thing about the research on the Reverse Ponseti Technique is that a) it is almost all recent, and b) the outcomes are really good for the babies that have both the tenotomy and the pinning of the naviculotalar joint. There seems to be some difference in opinion among the authors on whether or not postoperative bracing is needed, although I'm wondering if that is due to whether or not the child has idiopathic CVT (ie - no other major medical diagnoses that could contribute to muscle development) or has CVT accompanied by something else - spina bifida and athrogryposis are two mentioned in conjunction with CVT. Most of the current research on treating CVT centers around a study published by Dobbs in 2006 - the next most recent research I could find in the Journal of Bone and Joint Surgery was published 20 years earlier! Kind of makes me happy that it took us so long to get pregnant with E...
By the way, when I tried to get access to that article, the Journal diverted me to a page where you had to log in, etc or pay $30. At the bottom of the page though, was a section on if you are a patient or researching something for a patient. If you email the JBJS as a patient, they will apparently email you a copy of the article you're interested in. Good for them! I'm sure it's going to be a tough read, even for someone in the medical field, but it somehow makes me feel better to know the play-by-play that will likely be happening.
So, I got a good review of my anatomy, and I'm feeling a bit better about the conversation with the doctor on Tuesday. Still not feeling good about the anesthesia, but there's not a lot I can do about that. I trust that God is looking out for my little boy, and it's all in His hands.
ETA - didn't realize I only saved and didn't post this one on Sunday when I wrote it...
The nice thing about the research on the Reverse Ponseti Technique is that a) it is almost all recent, and b) the outcomes are really good for the babies that have both the tenotomy and the pinning of the naviculotalar joint. There seems to be some difference in opinion among the authors on whether or not postoperative bracing is needed, although I'm wondering if that is due to whether or not the child has idiopathic CVT (ie - no other major medical diagnoses that could contribute to muscle development) or has CVT accompanied by something else - spina bifida and athrogryposis are two mentioned in conjunction with CVT. Most of the current research on treating CVT centers around a study published by Dobbs in 2006 - the next most recent research I could find in the Journal of Bone and Joint Surgery was published 20 years earlier! Kind of makes me happy that it took us so long to get pregnant with E...
By the way, when I tried to get access to that article, the Journal diverted me to a page where you had to log in, etc or pay $30. At the bottom of the page though, was a section on if you are a patient or researching something for a patient. If you email the JBJS as a patient, they will apparently email you a copy of the article you're interested in. Good for them! I'm sure it's going to be a tough read, even for someone in the medical field, but it somehow makes me feel better to know the play-by-play that will likely be happening.
So, I got a good review of my anatomy, and I'm feeling a bit better about the conversation with the doctor on Tuesday. Still not feeling good about the anesthesia, but there's not a lot I can do about that. I trust that God is looking out for my little boy, and it's all in His hands.
ETA - didn't realize I only saved and didn't post this one on Sunday when I wrote it...
Tuesday, September 28, 2010
Cast #5
Well, another week, another cast, and (I think) another tooth. Isn't life grand when you're 11 and 1/2 months old? Actually, E thinks it is a pretty cool age. He's enjoying pulling himself up in the crib and doing laps around the inside when he's supposed to be sleeping, and I know I've said it before, but that cast really does not slow him down at all. He's figured out how to transition from his tummy to sitting and vice versa in spite of the cast, and aside from the putting it on/taking it off part, he ignores it. It is so cool to watch him explore what he can do!
So we went back to Chapel Hill for a second round of x-rays and (supposedly) to schedule the surgery. Unfortunately it appears as if a computer glitch has claimed a lot of the x-rays taken that week. I love computers, but not so much today. Another week to wait before we find out more about E's surgery. On the bright side, from what I'm reading about the surgery we're almost definitely looking at an Achilles tendon lengthening and a pin through the navicular and the talus to hold that joint together. The iffey thing is whether he'll need another release on the top of his foot, and another week in the cast may help us stretch enough to avoid that third part. Just speculation on my part, but I'm trying to keep the silver-lining thing in the front of my head. God leads us through these things, and I'm trusting in Him that it's going to be for the best.
So we went back to Chapel Hill for a second round of x-rays and (supposedly) to schedule the surgery. Unfortunately it appears as if a computer glitch has claimed a lot of the x-rays taken that week. I love computers, but not so much today. Another week to wait before we find out more about E's surgery. On the bright side, from what I'm reading about the surgery we're almost definitely looking at an Achilles tendon lengthening and a pin through the navicular and the talus to hold that joint together. The iffey thing is whether he'll need another release on the top of his foot, and another week in the cast may help us stretch enough to avoid that third part. Just speculation on my part, but I'm trying to keep the silver-lining thing in the front of my head. God leads us through these things, and I'm trusting in Him that it's going to be for the best.
Tuesday, September 21, 2010
Busy week - 3rd and 4th casts
The third casting was last week, and I didn't get to post because E and I left right after his appointment to go see my grandmother in the hospital. We got there a little late (hate traffic!) but it was a neat appointment because he had his fluro x-ray. No idea if I spelled that right, but we could see the bones in his foot are starting to line up nicely. Yay it's working! On the downside, E's leg (especially the front of his ankle) is super red and irritated-looking. I'm sure it's just the skin reacting to being covered by the cast for so long, but he was unhappy even getting the cast removed this time - probably due to the vibration on his sensitive skin. Poor guy cried through both that and the re-casting. My hubby picked the cast color this time, as I previously failed to realize that the purple cast that I thought was cool looking was unacceptable because purple is the color of the Baltimore Ravens, and being a Pittsburgh Steeler household that is not good. So, we left with E in a camo cast, which did earn multiple compliments during our trip to Georgia to see Granny. Aside from a bout of pinkeye and another upper tooth cutting, this cast was pretty uneventful.
We actually arrived early for today's casting, and Dr. Henderson was very happy with how E's foot is looking. Again, we cried during the cast removal. And then we cried before Dr. H even had a chance to touch his foot. He knows what's coming, and it breaks my heart that he's so unhappy. He's normally such a sunny kid! I just don't know how to help him through this. He weaned himself off of the bottle last month, and a sippy cup isn't much comfort. We had the lamb paci (from Pacimals - love that thing!), but he worked himself into such a state that his little head was soaked in sweat by the time we were done. On the bright side, it sounds like we're getting another x-ray next week and Dr. H is expecting to schedule our surgery. Hubby and I are not in agreement about the time frames we heard last time when we asked about the plan during and after surgery. Dr. H said that they like to keep the kids overnight after the procedure to make sure everything's ok, and I think they'll cast him into a neutral position when they're done for 8-12 weeks. My husband heard 10-12, but either way we probably won't be out of the cast until after Thanksgiving. Maybe Christmas, but that's just me thinking and hoping.
We actually arrived early for today's casting, and Dr. Henderson was very happy with how E's foot is looking. Again, we cried during the cast removal. And then we cried before Dr. H even had a chance to touch his foot. He knows what's coming, and it breaks my heart that he's so unhappy. He's normally such a sunny kid! I just don't know how to help him through this. He weaned himself off of the bottle last month, and a sippy cup isn't much comfort. We had the lamb paci (from Pacimals - love that thing!), but he worked himself into such a state that his little head was soaked in sweat by the time we were done. On the bright side, it sounds like we're getting another x-ray next week and Dr. H is expecting to schedule our surgery. Hubby and I are not in agreement about the time frames we heard last time when we asked about the plan during and after surgery. Dr. H said that they like to keep the kids overnight after the procedure to make sure everything's ok, and I think they'll cast him into a neutral position when they're done for 8-12 weeks. My husband heard 10-12, but either way we probably won't be out of the cast until after Thanksgiving. Maybe Christmas, but that's just me thinking and hoping.
Monday, September 6, 2010
Second cast
So we survived the beach with a 10.5 month-old in a cast, including the necessary plane ride to and from to reach the beach. We were celebrating my grandparents' 90th birthdays (within about 3 weeks of each other), and everyone had a blast. Unfortunately, as is not uncommon with visits to extended family that involve multiple (8 total) munchkins, E came home with a fever that, while controllable with ibuprofen, did not want to go away. That was Monday, and Monday night he woke up at around 3 am crying - I re-dosed him with the ibuprofen because he felt really warm, and he fell back to sleep, but I didn't really.
Tuesday we made our second trip up to UNC. We'd been reading up on the diagnosis of oblique talus, and there really wasn't a whole lot to see - most of the research we could find was on the more involved vertical talus. Any mention of oblique talus was accompanied by a statement that resembled - it's not that bad and doesn't always even require treatment. That should have been our first clue, I suppose. We traipsed up to UNC, and due to feeling crummy and not sleeping well the night before, E actually napped during the drive up. He held up remarkably well to the cast removal, and didn't start really crying until Dr. H came in to re-apply the second cast. During all of the crying and holding him down for the casting (that SO sucks, by the way), we did manage to turn our brains on enough to ask Dr. H about the surgery issue. It hadn't sounded like, from our reading, that it was always a necessity. Dr. H was very firm though, that surgery would definitely be necessary to fully correct E's problem. Maybe just a tendon lengthening, but probably also a pinning of the joint. We blinked, and missed our chance to ask more questions. We were (again) a bit shell-shocked. The doctor had just confirmed our worst fears, in that we would have to deliver our precious baby over to the medical team for him to have surgery. We were confused, as we had thought his diagnosis was the more benign oblique talus, but in all of the swirling, we packed up our sniffling little boy and headed home.
That was a very long day. E was fussy all day, difficult to console, and very un-like our normally happy child. We attributed it to the new cast, and doled out the acetaminophen at regular intervals. Which explains why he wasn't still running a fever, I guess. Tuesday night was probably the worst night of his entire childhood. He slept in 40 minute intervals all night, with 10-20 minute spurts of crying in between. Which means I slept in 35 minute intervals, assuming it took me longer to fall asleep after I was sure he wasn't going to start crying again. We decided that we'd just gotten lucky during the previous casting, and I made sure I kept up with his acetaminophen that day, which made him more comfortable. Wednesday night was only marginally better, so by the time we got up on Thursday, I'd decided we were going to the pedi. I was going insane from lack of sleep, and while he was taking very nice, solid 2 hour naps, the little guy was obviously exhausted. Sure enough, on top of a new cast, the poor dude was coping with a double ear infection. Antibiotics, followed by the normal diarrhea that seems to go with antibiotics in kids, but at least it was something we could fix, unlike the cast just being uncomfortable.
Amidst my lack of sleep, my husband had started to get upset. I wasn't operating on all 8 cylinders (heck, probably not even on 2 after all of the nights in a row with bad sleep), so it took me a little longer to get ramped up. Every thing we found on the internet suggested that with a diagnosis of oblique talus he shouldn't need surgery. We didn't understand why, if he had the milder version, he was definitely going to need surgery. Also, we didn't really know what the full plan of care was. We knew what the internet said, and Dr. H had answered "yes" when I had asked if he would be casted after the suregery, but we were feeling like we had been bundled so quickly from one thing to another that if anyone had explained what was going to happen, we'd missed that part. I called up to UNC, although given my sleep deprivation I was probably not the right person to be making that type of call, and was able to pretty easily get a nurse to look at E's medical records. I'm sure anyone actually reading this has already figured out that we had mis-understood Dr. H that first day and E was actually diagnosed with vertical talus. This made the matter-of-fact way he'd referred to E's need for surgery make much more sense. Dr. H passed the message along via the nurse that he would explain it (he actually said "again," but I'm pretending I didn't hear that part) at our next appointment.
So, we're closing the end of our first week in our second cast. No new cast this week because the doctor is on vacation, so I'm not sure if that means we'll need fewer casts because he's in these first two longer, or that we're prolonging the whole casting process between our various vacations, but at least my little boy will have some extra time to get well. On top of everything else, he's also cut 1 (and probably in the middle of cutting the other) of his top two teeth. The fact that he was sleeping at all, between the cast, the tooth, the ears, and the diarrhea, is nothing short of a miracle. Here's to more miracles and both of us getting sleep in the next week.
Tuesday we made our second trip up to UNC. We'd been reading up on the diagnosis of oblique talus, and there really wasn't a whole lot to see - most of the research we could find was on the more involved vertical talus. Any mention of oblique talus was accompanied by a statement that resembled - it's not that bad and doesn't always even require treatment. That should have been our first clue, I suppose. We traipsed up to UNC, and due to feeling crummy and not sleeping well the night before, E actually napped during the drive up. He held up remarkably well to the cast removal, and didn't start really crying until Dr. H came in to re-apply the second cast. During all of the crying and holding him down for the casting (that SO sucks, by the way), we did manage to turn our brains on enough to ask Dr. H about the surgery issue. It hadn't sounded like, from our reading, that it was always a necessity. Dr. H was very firm though, that surgery would definitely be necessary to fully correct E's problem. Maybe just a tendon lengthening, but probably also a pinning of the joint. We blinked, and missed our chance to ask more questions. We were (again) a bit shell-shocked. The doctor had just confirmed our worst fears, in that we would have to deliver our precious baby over to the medical team for him to have surgery. We were confused, as we had thought his diagnosis was the more benign oblique talus, but in all of the swirling, we packed up our sniffling little boy and headed home.
That was a very long day. E was fussy all day, difficult to console, and very un-like our normally happy child. We attributed it to the new cast, and doled out the acetaminophen at regular intervals. Which explains why he wasn't still running a fever, I guess. Tuesday night was probably the worst night of his entire childhood. He slept in 40 minute intervals all night, with 10-20 minute spurts of crying in between. Which means I slept in 35 minute intervals, assuming it took me longer to fall asleep after I was sure he wasn't going to start crying again. We decided that we'd just gotten lucky during the previous casting, and I made sure I kept up with his acetaminophen that day, which made him more comfortable. Wednesday night was only marginally better, so by the time we got up on Thursday, I'd decided we were going to the pedi. I was going insane from lack of sleep, and while he was taking very nice, solid 2 hour naps, the little guy was obviously exhausted. Sure enough, on top of a new cast, the poor dude was coping with a double ear infection. Antibiotics, followed by the normal diarrhea that seems to go with antibiotics in kids, but at least it was something we could fix, unlike the cast just being uncomfortable.
Amidst my lack of sleep, my husband had started to get upset. I wasn't operating on all 8 cylinders (heck, probably not even on 2 after all of the nights in a row with bad sleep), so it took me a little longer to get ramped up. Every thing we found on the internet suggested that with a diagnosis of oblique talus he shouldn't need surgery. We didn't understand why, if he had the milder version, he was definitely going to need surgery. Also, we didn't really know what the full plan of care was. We knew what the internet said, and Dr. H had answered "yes" when I had asked if he would be casted after the suregery, but we were feeling like we had been bundled so quickly from one thing to another that if anyone had explained what was going to happen, we'd missed that part. I called up to UNC, although given my sleep deprivation I was probably not the right person to be making that type of call, and was able to pretty easily get a nurse to look at E's medical records. I'm sure anyone actually reading this has already figured out that we had mis-understood Dr. H that first day and E was actually diagnosed with vertical talus. This made the matter-of-fact way he'd referred to E's need for surgery make much more sense. Dr. H passed the message along via the nurse that he would explain it (he actually said "again," but I'm pretending I didn't hear that part) at our next appointment.
So, we're closing the end of our first week in our second cast. No new cast this week because the doctor is on vacation, so I'm not sure if that means we'll need fewer casts because he's in these first two longer, or that we're prolonging the whole casting process between our various vacations, but at least my little boy will have some extra time to get well. On top of everything else, he's also cut 1 (and probably in the middle of cutting the other) of his top two teeth. The fact that he was sleeping at all, between the cast, the tooth, the ears, and the diarrhea, is nothing short of a miracle. Here's to more miracles and both of us getting sleep in the next week.
Thursday, September 2, 2010
Diagnosis Day
Life is pretty fantastic for us so far. Ethan is growing and developing in every way that he should. He is an absolute joy, and we are loving life as his parents. God is so good!
Fast forwarding to his 9 month well child appointment - we saw one of the physicians at our pedi's office, as the PA we usually see was out on vacation. She said that even though his foot did appear to be getting better, if it was her son she would take him back up to Chapel Hill for a second look. They made us an appointment, and off we trekked again.
This time, we were much less nervous. We'd been told so often about the packing-problem-it-will-go-away, that we didn't think much about it. The appointment wasn't at a perfect time for his nap, but we'd hoped he would fall asleep in the car on the 1 hour drive. No such luck, but fortunately he was still in good spirits in spite of the missed nap. He's a pretty happy baby in general. Our PA came in to examine our son's foot, flanked by (I suppose) a few students. He stretched both feet to check the range of motion in Ethan's feet and hips, but he seemed a little concerned with the stiffness he discovered in Ethan's right foot. He said that this was different from the last visit, so he thought an x-ray was appropriate. By this point in time, Ethan was getting a little fussy (an hour and a half after he should have been down for his morning nap), but he handled the x-ray remarkably well. A few minutes later, the PA came and told us he was going to have us see the pediatric orthopedist Dr. H. As quickly as we were bundled into x-ray, we were shifted into yet another room, where a few minutes later the doctor strode in.
I have to say, I didn't process a lot of what he said. I think both my husband and myself were feeling a little shell shocked. He talked about different foot problems and how one particular foot problem - congenital vertical talus - matched up with what was going on with Ethan's foot. He talked about the two versions, oblique versus vertical talus; what we would see when we googled the terms and the more common term "rockerbottom" foot. He talked about casting, and surgery, mentioning that oblique talus didn't always require surgery. We were then bundled over to casting, where we met the casting tech. Meanwhile, Ethan is 2 and a half hours past nap time and 30 minutes past lunch. Needless to say, the casting didn't go very easily. Fortunately, my little trouper was so exhausted that he fell asleep mid-casting.
We left the office with a zonked little boy in a cast, and a little fuzzy as to what had just happened. As we talked in the car on the way home, we decided that Dr. H had meant that Ethan had the milder version - oblique talus - and thanks to the miracle of modern technology, we googled the term on our iPhones on the way home. We didn't come up with a whole lot, but we focused on Dr. H's mention that oblique talus didn't always require surgery. We didn't know much of anything about the plan - if they had talked about what was coming next, it didn't register with us. We were hoping for a few weeks in a cast, maybe followed by a brace. Our next appointment wasn't for almost 2 weeks, since we were leaving for vacation in Florida for most of the next week. Yay - a week at the beach with a baby in a cast. Doesn't that sound like fun to you?
Wednesday, September 1, 2010
My First Time!
As a blogger! I've decided to start this blog because when our son was diagnosed with Congenital Vertical Talus (CVT), we of course googled the term - and found very, very little except abstracts and scientific journal articles. Nothing in any group. Nothing in any blog (that we have found). Nothing from any real people whose child had dealt with, and hopefully conquered, this diagnosis. Wow, I've also discovered that I hate typing or speaking the word "deformity."
So here's the story so far. On October 15, 2009 our son Ethan arrived to brighten our life. He showed up with very little fanfare, but with much anticipation. We had waited 6 years for this moment. He was my parents' first grandchild on the East coast. He was my husband's parents' first grandchild. And he was perfect in every way, except his right foot was folded up front-wise against his shin. It worried us, of course, but the pediatrician who examined him assured us that it was "just a packing problem," and they seemed very confident that it would work itself out. "The womb isn't square," we were told, "so this happens sometimes." No worries. After a few days under the heat lamps (he had jaundice), we took our beautiful son home.
Two week checkup, still we were assured that it was no problem. Again with the "it's a packing problem, and it will work itself out." The same thing followed at all of the subsequent appointments - not to worry. At his 4 month check up, the foot did indeed look better. But it still was obviously just not right. We were seeing the PA at our pediatricians' office, and she decided to refer us to the orthopedists at UNC, just to be sure. So, rather nervous, but pretty sure we would be coming home with a brace or a cast, we trekked up to Chapel Hill. The PA there examined our son's foot and, again, assured us that it was a packing problem and it should go away with time. He didn't take an x-ray, as he said there were so few bones that were visible in a baby's foot at this age. He didn't make us a follow up appointment, but encouraged us to keep stretching Ethan's foot and to give them a call if something changed.
Meanwhile, Ethan was growing and doing everything he should. He slept through the night (shout out to Babywise!), he rolled over, he started solids, he pulled to stand, he learned to crawl. He has the most people-pleasing personality, as he absolutely loves to make you smile, and he is SUCH a talker! He loves to laugh, and his smile lights up a room. We decided for me to (as much as the budget allows) stay home with Ethan, and I'm having a blast being a mommy.
Next time I'll cover more about our diagnosis day.
So here's the story so far. On October 15, 2009 our son Ethan arrived to brighten our life. He showed up with very little fanfare, but with much anticipation. We had waited 6 years for this moment. He was my parents' first grandchild on the East coast. He was my husband's parents' first grandchild. And he was perfect in every way, except his right foot was folded up front-wise against his shin. It worried us, of course, but the pediatrician who examined him assured us that it was "just a packing problem," and they seemed very confident that it would work itself out. "The womb isn't square," we were told, "so this happens sometimes." No worries. After a few days under the heat lamps (he had jaundice), we took our beautiful son home.
Two week checkup, still we were assured that it was no problem. Again with the "it's a packing problem, and it will work itself out." The same thing followed at all of the subsequent appointments - not to worry. At his 4 month check up, the foot did indeed look better. But it still was obviously just not right. We were seeing the PA at our pediatricians' office, and she decided to refer us to the orthopedists at UNC, just to be sure. So, rather nervous, but pretty sure we would be coming home with a brace or a cast, we trekked up to Chapel Hill. The PA there examined our son's foot and, again, assured us that it was a packing problem and it should go away with time. He didn't take an x-ray, as he said there were so few bones that were visible in a baby's foot at this age. He didn't make us a follow up appointment, but encouraged us to keep stretching Ethan's foot and to give them a call if something changed.
Meanwhile, Ethan was growing and doing everything he should. He slept through the night (shout out to Babywise!), he rolled over, he started solids, he pulled to stand, he learned to crawl. He has the most people-pleasing personality, as he absolutely loves to make you smile, and he is SUCH a talker! He loves to laugh, and his smile lights up a room. We decided for me to (as much as the budget allows) stay home with Ethan, and I'm having a blast being a mommy.
Next time I'll cover more about our diagnosis day.
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