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.
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