Tuesday, April 9, 2013
Molly's Baptism Weekend
Molly's baptism was the day before Easter and we were blessed to have family come to town to share her special day with her. It was a beautiful day shared with good friends.
Later that weekend we went to the Strategic Air and Space Museum which was pretty interesting. The girls were really excited to go and enjoyed seeing all the planes.
Fun Times
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| The girls one morning. Yes, Annie's hair looks like this most mornings, but oh the love these 3 girls have for each other! |
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| Lexie often climbs up on Annie's bed to play with her, and this day they were having such a fun time that both of them were giggling together and I could hear them from the other room! |
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| Molly before her school music program. She did great! |
Tuesday, April 2, 2013
WARNING! Graphic Surgical Image
Our orthopedist emailed us today the picture he took of Annie's knee during surgery. He was so surprised at the amount of damage done to her left knee that he decided to take the following picture. I, personally, find this picture pretty interesting; however, I realize that some people might not have the stomach for it, like Justin. So if you'd like to see it, keep scrolling down.
This is Annie's left knee. Her foot is to the left, her hip to the right. The white bone between the tips of the pincers is Annie's kneecap after being removed. Above that you can see the dark colored crater made in her bone that her kneecap created by being chronically dislocated and rubbing on her bone. This was by far worse damage than the doctor ever anticipated seeing, telling us that Annie's knees looked like those of an 80 year old woman with severe arthritis. I'm SO glad those kneecaps are now gone!! It's no wonder that her dislocated kneecaps were causing her SO much pain!
This is Annie's left knee. Her foot is to the left, her hip to the right. The white bone between the tips of the pincers is Annie's kneecap after being removed. Above that you can see the dark colored crater made in her bone that her kneecap created by being chronically dislocated and rubbing on her bone. This was by far worse damage than the doctor ever anticipated seeing, telling us that Annie's knees looked like those of an 80 year old woman with severe arthritis. I'm SO glad those kneecaps are now gone!! It's no wonder that her dislocated kneecaps were causing her SO much pain!
Knees Good, Seizures Bad
Annie had her post-op follow-up with her orthopedist today. He was surprised at the foam padding we had to use in order to prevent more pressure sores. He called our orthotist in to see her, and he was able to get lower profile braces for Annie that should be much more comfortable an easier to work around for dressing and diaper changes. We still have to use some small pieces of foam for extra padding around some pressure sores, but this is a huge improvement!
The orthopedist was surprised to see all her pressure sores, but said her incisions look great. He doesn't plan to do any debreeding of her sores, but thinks they will heal on their own as long as absolutely nothing touches them--particularly the one on her heel.
We'll go back in another 2 weeks (at the 4 week mark) to have her sores checked again, and to possibly start learning how to do some very minor controlled bending of Annie's leg. Then in 4 weeks (at the 6 week mark) we'll go back again and learn how to do more regular physical therapy on her legs, and keep the braces off.
So everything regarding Annie's knees is looking good, but Annie's seizures are still going like crazy despite several doses of Valium, Ativan, and Diastat. However, now instead of the seizures making her giggle almost all day long, they are making her cry all day and night. We're back to trying Lortab in case she's having pain that is causing the crying and the seizing, but it doesn't work either. She's so exhausted but can't get any sleep during the day or night. She's very much like a very colicky 60 lb newborn baby! So please keep her in your prayers, that she might make some improvements and finally get to rest her mind and body, without us having to take her back to the hospital!
The orthopedist was surprised to see all her pressure sores, but said her incisions look great. He doesn't plan to do any debreeding of her sores, but thinks they will heal on their own as long as absolutely nothing touches them--particularly the one on her heel.
We'll go back in another 2 weeks (at the 4 week mark) to have her sores checked again, and to possibly start learning how to do some very minor controlled bending of Annie's leg. Then in 4 weeks (at the 6 week mark) we'll go back again and learn how to do more regular physical therapy on her legs, and keep the braces off.
So everything regarding Annie's knees is looking good, but Annie's seizures are still going like crazy despite several doses of Valium, Ativan, and Diastat. However, now instead of the seizures making her giggle almost all day long, they are making her cry all day and night. We're back to trying Lortab in case she's having pain that is causing the crying and the seizing, but it doesn't work either. She's so exhausted but can't get any sleep during the day or night. She's very much like a very colicky 60 lb newborn baby! So please keep her in your prayers, that she might make some improvements and finally get to rest her mind and body, without us having to take her back to the hospital!
Monday, April 1, 2013
Pressure Sores
Annie's knees have been doing really well lately. She has been off her narcotics for a few days now and doesn't seem to have any pain from her knees. Her pressure sores are another story...
Earlier last week when we changed her dressings we noticed that she was developing pressure sores from the metal in her leg braces that are to keep her leg straight and allow her knees to heal. So we bought foam to wrap her legs in and protect them from the rigid braces. About a week later now, her sores still don't appear to be healing, but they haven't worsened either.
Her left heel, however, has the worst pressure sore from where it rests on her wheelchair or the bed. Since her knees are immobilized, she's unable to kick her legs around like she usually does, and has developed a worsening pressure sore regardless of our efforts to elevate it.
We had Annie into her pediatrician today because she's been vomiting all weekend and we suspect she has a UTI. While there, we had him look at her pressure sores, and he sent us straight to the hospital to get her left heel x-rayed. The concern is that an infection in a pressure sore can enter the bone and then become a very serious and difficult infection to treat. Fortunately, the x-ray showed that the pressure sore has not affected the bone, at least not yet. We'll see her orthopedist tomorrow for her post-op appointment and have him evaluate her sores as well.
Annie's seizures have also increased dramatically despite her regular doses of valium she started receiving post-operatively. They are a unique kind of seizure and rather subtle, but if you watch her throughout the day (or night), it's easy to notice several periods of seizure activity. We have mixed feelings about them though, because this kind of seizure makes Annie giggle so hard. It's so fun to watch her smile so big and laugh, until we realize that she's laughing because of the seizures.
So this recovery has been very different from what we've expected. We really have no concerns about how her knees are healing and they don't even seem to be causing her pain, but her pressure sores are so worrisome, on top of the seizures, and the UTI symptoms.
Justin, as a leader in our church, gave the sermon on Easter Sunday yesterday in our church. He did a beautiful job talking about Christ and the miracle and blessing of the resurrection. I am so grateful for the Savior and the resurrection, and to know that Annie will one day be made whole, especially as we watch her suffer through so many physical trials right now. We were blessed to have a wonderful Easter weekend spent with family. We were also blessed to have Molly baptized into The Church of Jesus Christ of Latter-day Saints. We are so proud of her, and are thankful for the friends and family that shared that special day with us. (Pictures to come once I get them off my camera!)
Earlier last week when we changed her dressings we noticed that she was developing pressure sores from the metal in her leg braces that are to keep her leg straight and allow her knees to heal. So we bought foam to wrap her legs in and protect them from the rigid braces. About a week later now, her sores still don't appear to be healing, but they haven't worsened either.
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| Annie's legs wrapped in foam to prevent more pressure sores. |
Her left heel, however, has the worst pressure sore from where it rests on her wheelchair or the bed. Since her knees are immobilized, she's unable to kick her legs around like she usually does, and has developed a worsening pressure sore regardless of our efforts to elevate it.
We had Annie into her pediatrician today because she's been vomiting all weekend and we suspect she has a UTI. While there, we had him look at her pressure sores, and he sent us straight to the hospital to get her left heel x-rayed. The concern is that an infection in a pressure sore can enter the bone and then become a very serious and difficult infection to treat. Fortunately, the x-ray showed that the pressure sore has not affected the bone, at least not yet. We'll see her orthopedist tomorrow for her post-op appointment and have him evaluate her sores as well.
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| These pressure sores are from the compression wraps she wore for the first 6-7 days after surgery. |
Annie's seizures have also increased dramatically despite her regular doses of valium she started receiving post-operatively. They are a unique kind of seizure and rather subtle, but if you watch her throughout the day (or night), it's easy to notice several periods of seizure activity. We have mixed feelings about them though, because this kind of seizure makes Annie giggle so hard. It's so fun to watch her smile so big and laugh, until we realize that she's laughing because of the seizures.
So this recovery has been very different from what we've expected. We really have no concerns about how her knees are healing and they don't even seem to be causing her pain, but her pressure sores are so worrisome, on top of the seizures, and the UTI symptoms.
Justin, as a leader in our church, gave the sermon on Easter Sunday yesterday in our church. He did a beautiful job talking about Christ and the miracle and blessing of the resurrection. I am so grateful for the Savior and the resurrection, and to know that Annie will one day be made whole, especially as we watch her suffer through so many physical trials right now. We were blessed to have a wonderful Easter weekend spent with family. We were also blessed to have Molly baptized into The Church of Jesus Christ of Latter-day Saints. We are so proud of her, and are thankful for the friends and family that shared that special day with us. (Pictures to come once I get them off my camera!)
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