It's frustrating that the medical professionals who are making decisions about what is "best" for our children probably have never been around a child for more than 1/2 hour here and a few minutes there that are in things like: a spica cast, a brace, a harness, etc.
Do they know that while foam may seem cheap and just as effect, it doesn't breath at all and the little ones get so incredibly sweaty underneath?
Do they know that once the babies turn to toddlers and they try to sit, crawl, stand and even walk in a foam brace held by velcro it doesn't hold it's integrity and shape very well at all?
Do they know the struggles that come with caring for a child in a spica cast 24/7?
Do they know the emotional toll seeing your baby go through hip dysplasia takes?
Maybe if they did they would wait a little longer to answer your questions.
Maybe if they did they would take some time to talk to you about what might work best for your individual child.
Maybe if they did they would have a little more compassion.
In somewhat good news, we have finally heard back from the Orthotic clinic that they have a few different brace's in for Mackenzie to try out. We go on Wednesday. Two weeks after that we go back up to Edmonton for a follow-up appointment. Is it even worth it at this point? With the luck we have always had at those appointments she probably will need to wear the brace for awhile longer, so I suppose it is.
Saturday, September 29, 2012
Friday, September 21, 2012
What Have we Been Up to Lately?
Just the same old, same old.
Haven't heard anything back yet about our new brace, but as I mentioned before Mackenzie is doing great now in the foam one.
She loves pulling herself into a standing position and has taken a few tumbles but is such a trooper.
Bath time is her absolute favorite and she cries almost every time when we take her out.
Haven't heard anything back yet about our new brace, but as I mentioned before Mackenzie is doing great now in the foam one.
She loves pulling herself into a standing position and has taken a few tumbles but is such a trooper.
Bath time is her absolute favorite and she cries almost every time when we take her out.
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| A little brace free time for a trike ride. |
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| One of Mackenzie's favorite places to play |
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| Crazy bath hair |
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| She loves the stairs. Good leverage to pull into a standing position |
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| Improvising to play in the sandbox at the day home. |
Tuesday, September 11, 2012
New Brace?
We met with the Orthopedic specialist today. Unfortunately it is going to take up to 2 weeks for him to get a new brace for Mackenzie. He measured Mackenzie and now has to talk to our surgeon to get some more information about what type of brace he can get/build. I am disappointed. That means she will only need to be in it 24/7 for 3 more weeks (hopefully!) by the time we get it. Is it even worth it?
Look at what I caught the little stinker doing today. She just wants to go so bad.
Look at what I caught the little stinker doing today. She just wants to go so bad.
Rolling with the Punches
Mackenzie has literally, re-learned how to roll over and is back to moving all over in her crib despite the diaper splint. She is also back to sleeping on her stomach and probably loving it! She never could roll in the spica cast. Too much weight and too awkward of a position to get the momentum to roll.
As with all things in her short life so far she has been truly inspirational and has adapted so well. The first couple days adjusting back to brace life were tough. She still is angry (I think) that she is not able to sit up in the diaper splint but otherwise is happy to army crawl around and has been getting back into more independent play without needing us all-the-time.
This morning I am home from work and we are headed out in about half an hour to go get fitted for an abduction brace. We are so happy that there is an Orthopedic place here and we don't have to drive all the way to Edmonton for the appointment. I am hopeful that this new brace will give her even more freedom and also not be as hot and sweaty underneath as the diaper splint is.
I will keep you posted!
As with all things in her short life so far she has been truly inspirational and has adapted so well. The first couple days adjusting back to brace life were tough. She still is angry (I think) that she is not able to sit up in the diaper splint but otherwise is happy to army crawl around and has been getting back into more independent play without needing us all-the-time.
This morning I am home from work and we are headed out in about half an hour to go get fitted for an abduction brace. We are so happy that there is an Orthopedic place here and we don't have to drive all the way to Edmonton for the appointment. I am hopeful that this new brace will give her even more freedom and also not be as hot and sweaty underneath as the diaper splint is.
I will keep you posted!
Saturday, September 8, 2012
The Case of the Brace
Well, we are back into brace life.
The first few days were rough. Really rough.
Mackenzie had some lingering traumatization (is that a word?) from the cast removal. Her brace does up via velcro and every time we would undo the velcro to take it off that noise would scare her and she would start crying. She also was hating the brace. Every time we would put it back on after a diaper change or bath or being in her carseat, she would cry. The first two days she would not even let us put her down on the floor without crying. We basically had to hold her or be right down on the floor with her.
She is back in the same kind of brace she had before we did the closed reduction. It's a stiff foam type material that they cut to fit and then heat up and mould to her body. It's called a diaper splint. In all the reading I've done about DDH I have never seen this time of brace before. This brace worked well for us when Mackenzie was first diagnosed. She was only 6 months old and not crawling yet. This time around she was able to be extremely mobile in her second cast: crawling, sitting in it even, and pulling up on stairs, coffee tables, you name it. The major downfall of this type of brace is that it keeps the kids totally straight. Sitting is not an option. We also have some skepticism since this brace didn't do us any good the first time around.
After a couple breakdowns (on mom's part, not Mackenzie's), we sent an email to our surgeon's secretary - who is awesome by the way - asking if there is any way we could get a different type of brace. I even sent pictures so there was no confusion about what we were asking for.
We had asked him about this while she was still in the cast and originally he said that is the type of brace he usually uses when kids come out of the cast. However, when she got the cast off he said he was putting her back in the diaper splint. I mentioned in the previous post, we questioned this but he gave some answer that didn't make much sense about the other brace's being longer term.
We heard back from his secretary that our surgeon has okayed us getting an abduction brace and we need to call "Northern Alberta Prosthetic and Orthotic Services" on Monday to set that up. I'm hoping we can get in sooner rather than later so Mackenzie can have some more freedom.
In true Mackenzie fashion, she has just taken this new adventure in stride and is back to army crawling around and playing on the floor on her stomach and figuring out how to adapt to life back in the brace.
The first few days were rough. Really rough.
Mackenzie had some lingering traumatization (is that a word?) from the cast removal. Her brace does up via velcro and every time we would undo the velcro to take it off that noise would scare her and she would start crying. She also was hating the brace. Every time we would put it back on after a diaper change or bath or being in her carseat, she would cry. The first two days she would not even let us put her down on the floor without crying. We basically had to hold her or be right down on the floor with her.
She is back in the same kind of brace she had before we did the closed reduction. It's a stiff foam type material that they cut to fit and then heat up and mould to her body. It's called a diaper splint. In all the reading I've done about DDH I have never seen this time of brace before. This brace worked well for us when Mackenzie was first diagnosed. She was only 6 months old and not crawling yet. This time around she was able to be extremely mobile in her second cast: crawling, sitting in it even, and pulling up on stairs, coffee tables, you name it. The major downfall of this type of brace is that it keeps the kids totally straight. Sitting is not an option. We also have some skepticism since this brace didn't do us any good the first time around.
After a couple breakdowns (on mom's part, not Mackenzie's), we sent an email to our surgeon's secretary - who is awesome by the way - asking if there is any way we could get a different type of brace. I even sent pictures so there was no confusion about what we were asking for.
We had asked him about this while she was still in the cast and originally he said that is the type of brace he usually uses when kids come out of the cast. However, when she got the cast off he said he was putting her back in the diaper splint. I mentioned in the previous post, we questioned this but he gave some answer that didn't make much sense about the other brace's being longer term.
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| This is one of the photos I sent to the surgeon. Found on the Hip Dysplasia Baby Center board. |
In true Mackenzie fashion, she has just taken this new adventure in stride and is back to army crawling around and playing on the floor on her stomach and figuring out how to adapt to life back in the brace.
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| Here is a bad iPhone photo of her in the brace |
Thursday, September 6, 2012
The Cast is Off!
On September 4th, 10 weeks and 5 days after she had her first cast put on following a closed reduction, our baby became cast free!
Our doctor agreed to seeing us one week earlier than originally planned due to some of our concerns with Mackenzie's cast. We weren't 100% sure whether or not they were going to take the cast off at that appointment or make us wait until the following week when the cast removal was scheduled.
It never fails that our appointments seem to fall at a time where Mackenzie has missed a nap or could/should have napped in the car, but didn't. So, she ends up being a cranky mess on top of everything else that is going on. Yesterday was no exception.
As with all of our appointments we started out with an x-ray. The x-ray technician this time was less than friendly. She was trying to get me to hold Mackenzie's free leg in the same position as her casted leg. Well, at this stage in the game Mackenzie wants nothing to do with laying on examination tables or dealing with medical professionals as a whole. She was crying and only one parent is allowed in for the x-ray so I was having to try to hold her down and hold her still. I told Brice that I never want to have to be the one to do that again. I hate having to try to restrain her and she doesn't understand what is going on and she is scared. I don't think they got a very good picture because I couldn't hold her totally still while keeping her hands out of the way and her leg elevated how the technician wanted it.
After the x-ray it was back to the waiting room again. Thankfully our appointment was pretty early in the morning so we didn't have to wait too long before we got called back to see the doctor.
You may remember that our doctor was not the one to do this cast. He was on holidays when it needed to be changed so one of his colleagues did it. Our regular doctor didn't seem to care for the cast structure or positioning right from the get go, so because of our other concerns with the cast possibly shifting and the leg circulation when Mackenzie would sit on it, he agreed to take it off at this appointment.
Enter the "cast technitian". They needed to make cuts along both lengths of the leg as well as both sides of the torso in order to remove the cast. The "saw" is very noisy so we were given ear protection for both Mackenzie and ourselves. As soon as she had the ear pieces on she was already upset. Then when the saw turned on she got more upset. Then when the saw was actually cutting the cast she was freaking out and crying so hard and trying to get away. Both of us had to hold her down and move her around so the technitian could make all the cuts. After that he had to use scissors to cut out the inside cotton part of the cast. The whole thing maybe took 5 minutes, but it felt like an eternity. It is a terrible feeling to have to hold your child down while they are so upset and not being able to explain to them what is going on.
We were given some clothes and towels to give her a quick wipe down. She was stinky!!!
The doctor came back in and told us he wanted to put Mackenzie back in a diaper splint like she had before we did the closed reduction. He wants her to wear it for 6 weeks full time (except for diaper changes and baths) and then we will re-evaluate. He tried to examine her once the cast came off, but she was so worked up and upset that it wasn't really possible. We asked about a different kind of brace as we have never seen any other DDH patients with these splints, but he said that those were for longer term treatment, or something along those lines that didn't make much sense to us. As we find every time we go there, he didn't do much explaining and was heading out the door as fast as he could.
So, with our very tired, and now very upset child, we headed down to the rehabilitation centre in the hospital to get fitted for the brace by an occupational therapist. The process seemed to take forever but finally we were on our way with the brace in hand.
Mackenzie doesn't fit in her carseat with the brace, so she got to be totally free for the drive home and slept pretty much the entire way.
I'll update tomorrow with how the first few days have been going in the brace/diaper splint.......it's been a bit rough.
Our doctor agreed to seeing us one week earlier than originally planned due to some of our concerns with Mackenzie's cast. We weren't 100% sure whether or not they were going to take the cast off at that appointment or make us wait until the following week when the cast removal was scheduled.
It never fails that our appointments seem to fall at a time where Mackenzie has missed a nap or could/should have napped in the car, but didn't. So, she ends up being a cranky mess on top of everything else that is going on. Yesterday was no exception.
As with all of our appointments we started out with an x-ray. The x-ray technician this time was less than friendly. She was trying to get me to hold Mackenzie's free leg in the same position as her casted leg. Well, at this stage in the game Mackenzie wants nothing to do with laying on examination tables or dealing with medical professionals as a whole. She was crying and only one parent is allowed in for the x-ray so I was having to try to hold her down and hold her still. I told Brice that I never want to have to be the one to do that again. I hate having to try to restrain her and she doesn't understand what is going on and she is scared. I don't think they got a very good picture because I couldn't hold her totally still while keeping her hands out of the way and her leg elevated how the technician wanted it.
After the x-ray it was back to the waiting room again. Thankfully our appointment was pretty early in the morning so we didn't have to wait too long before we got called back to see the doctor.
You may remember that our doctor was not the one to do this cast. He was on holidays when it needed to be changed so one of his colleagues did it. Our regular doctor didn't seem to care for the cast structure or positioning right from the get go, so because of our other concerns with the cast possibly shifting and the leg circulation when Mackenzie would sit on it, he agreed to take it off at this appointment.
Enter the "cast technitian". They needed to make cuts along both lengths of the leg as well as both sides of the torso in order to remove the cast. The "saw" is very noisy so we were given ear protection for both Mackenzie and ourselves. As soon as she had the ear pieces on she was already upset. Then when the saw turned on she got more upset. Then when the saw was actually cutting the cast she was freaking out and crying so hard and trying to get away. Both of us had to hold her down and move her around so the technitian could make all the cuts. After that he had to use scissors to cut out the inside cotton part of the cast. The whole thing maybe took 5 minutes, but it felt like an eternity. It is a terrible feeling to have to hold your child down while they are so upset and not being able to explain to them what is going on.
We were given some clothes and towels to give her a quick wipe down. She was stinky!!!
The doctor came back in and told us he wanted to put Mackenzie back in a diaper splint like she had before we did the closed reduction. He wants her to wear it for 6 weeks full time (except for diaper changes and baths) and then we will re-evaluate. He tried to examine her once the cast came off, but she was so worked up and upset that it wasn't really possible. We asked about a different kind of brace as we have never seen any other DDH patients with these splints, but he said that those were for longer term treatment, or something along those lines that didn't make much sense to us. As we find every time we go there, he didn't do much explaining and was heading out the door as fast as he could.
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| Cast free, pretty tired, and waiting for the diaper splint to be made. |
Mackenzie doesn't fit in her carseat with the brace, so she got to be totally free for the drive home and slept pretty much the entire way.
I'll update tomorrow with how the first few days have been going in the brace/diaper splint.......it's been a bit rough.
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