Saturday, April 10, 2010
Basement Construction Zone
Just a few weeks before our home warranty expired we noticed that there was a large lump in the floor of our basement. Our builder figured out that the concrete underneath had moved and buckled, so we got that all fixed this past week. It was quite the project, but fortunately it was all still covered under our warranty. It actually only took 3 days--one day they cut the carpet and pulled it all back, the next day they cut the concrete and jackhammered up that cut portion, then poured new concrete, and the third day they re-laid the carpet. They all did such a great job that you'd never be able to tell that we had our basement ripped up a few days ago.
Monday, April 5, 2010
Some Pictures from March
Molly turned 5 this month!
Her "birthday wish came true".... a bike!
And it's finally warm enough to go for walks! (Lexie fell asleep in the backpack!)
Lexie is looking so cute in her summer clothes and ponytail!
And Justin loves making cookies with the kids.
(Lexie's friend Spencer was on loan to us for a few hours--Justin needs some time with a boy around the house.)
Wednesday, March 31, 2010
Sleepy Lexie
The house got rather quiet this morning while I was working in the office downstairs. I went upstairs to see where Lexie was and this is what I found:
Tuesday, March 30, 2010
Annie's Knee Saga Comes to an End
We finally got in to see our third orthopedist since moving here just a year ago. He is known as being the best orthopedist here and we would have chosen him as our original doctor when we first moved here, but he's near to retirement and doesn't accept new patients. But, with a referral from our other orthopedist who did Annie's knee surgery, we were able to get in. He was wonderful and put our minds at ease!
We went to this doctor because after Annie's last knee surgery failed, we were told to see this new doctor who would be best at performing a patellectomy to completely remove Annie's kneecap. So we have been planning for surgery sometime this spring and dreading the thought of it all. But once we saw this doctor today, he thought it was rather ridiculous that we were referred to him for a patellectomy! He said a patellectomy is absolutely a last resort operation that you don't enter into lightly. He said Annie is NOT a candidate for a patellectomy because she's not experiencing any pain from her dislocating kneecap now. Yes, it's still dislocating, but not with the force that it was before her last surgery. So we have abandoned the knee brace and our plans for more surgery and are getting back to our "normal" life! Her kneecap continues to dislocate, but it's not bothersome for her, so I guess we'll leave it at that unless it starts causing her pain. So now Annie has a left dislocated hip and a right dislocated knee! But she's happy! And so are we!
We went to this doctor because after Annie's last knee surgery failed, we were told to see this new doctor who would be best at performing a patellectomy to completely remove Annie's kneecap. So we have been planning for surgery sometime this spring and dreading the thought of it all. But once we saw this doctor today, he thought it was rather ridiculous that we were referred to him for a patellectomy! He said a patellectomy is absolutely a last resort operation that you don't enter into lightly. He said Annie is NOT a candidate for a patellectomy because she's not experiencing any pain from her dislocating kneecap now. Yes, it's still dislocating, but not with the force that it was before her last surgery. So we have abandoned the knee brace and our plans for more surgery and are getting back to our "normal" life! Her kneecap continues to dislocate, but it's not bothersome for her, so I guess we'll leave it at that unless it starts causing her pain. So now Annie has a left dislocated hip and a right dislocated knee! But she's happy! And so are we!
Monday, March 29, 2010
Annie's New Button
I took Annie to see a new general surgeon here today. For the past several weeks Annie has been having irritation around her G-button stoma site. We took her to her pediatrician and even had a full abdominal sonogram trying to figure out what was wrong. They couldn't find any problems, but I had that mother's intuition or gut feeling, or inspiration, or whatever you want to call it.... that Annie's G-button is probably just too small. She originally had her G-button placed when she was 2 years old and even though we change it out ourselves every 3-6 months, we've been continuing to use the same size button for the last 6 years.
So I decided to take Annie to a general surgeon for him to determine whether she really needed a larger button size. He was shocked when I told him she's had the same size button for 6 years! He increased the stem length by 2mm (1.7cm 14fr) so we'll see if this helps relieve her irritation.
We realize most people don't understand how a G-button works or what it looks like, so here's a picture. (There's also a picture of it in her tummy on Annie's FAQ page.) So Annie has a hole directly into her stomach--called a stoma. The balloon on the left in the picture above is the balloon we inflate in her stomach which prevents the button from coming out. The port on the right is the part that is outside of her stomach on her skin. So we just connect a tube to the feeding port and that's how we feed her--the fluid goes through the feeding port, down through the stem, and empties into her stomach at the base of the balloon.
This is the devise we replace at home every 3-6 months, simply by withdrawing all the fluid from the balloon that holds the button in, and pulling the devise out of her stomach. So when we say that we got her a button with a longer stem, this means the balloon now sits further down in her stomach so it's not pressing up against the interior wall of her stomach so tightly.
Anyway, that was all just for FYI since we know people are always curious but usually too embarrassed or afraid to ask.
So I decided to take Annie to a general surgeon for him to determine whether she really needed a larger button size. He was shocked when I told him she's had the same size button for 6 years! He increased the stem length by 2mm (1.7cm 14fr) so we'll see if this helps relieve her irritation.
We realize most people don't understand how a G-button works or what it looks like, so here's a picture. (There's also a picture of it in her tummy on Annie's FAQ page.) So Annie has a hole directly into her stomach--called a stoma. The balloon on the left in the picture above is the balloon we inflate in her stomach which prevents the button from coming out. The port on the right is the part that is outside of her stomach on her skin. So we just connect a tube to the feeding port and that's how we feed her--the fluid goes through the feeding port, down through the stem, and empties into her stomach at the base of the balloon.
This is the devise we replace at home every 3-6 months, simply by withdrawing all the fluid from the balloon that holds the button in, and pulling the devise out of her stomach. So when we say that we got her a button with a longer stem, this means the balloon now sits further down in her stomach so it's not pressing up against the interior wall of her stomach so tightly.
Anyway, that was all just for FYI since we know people are always curious but usually too embarrassed or afraid to ask.
Wednesday, March 24, 2010
One Reason We Hate Seizures
Annie commonly bites her tongue during seizures and causes canker sores on her lip or tongue, but I don't ever remember her having two such huge cankers at the same time before! Cankers make her drool profusely, saturating a bib in about 15 minutes, and causing her to choke, gag, and vomit at night. She also can't suck on her binky when she has such large sores in her mouth. I am SO grateful she doesn't eat anything by mouth!
Wednesday, March 10, 2010
Annie's MRI Results
Annie had an MRI of her knee on Monday, so today I took her to the orthopedist to get the results. Sure enough, she ruptured the tendon graft that was placed to prevent her knee cap from dislocating. The tendon had actually broken to two places, but was still securely fastened to her bones. So it wasn't the result of the doctor's ability to make the tendon secure, the tendon just wasn't strong enough to hold her knee cap in place, especially when she has seizures that make her muscles want to yank her knee cap out of joint.
So we're back to square one--exactly where we were 4 months ago before she had her first knee surgery. The doctor doesn't suggest repeating this same procedure to tether her knee cap in place with a tendon graft because he expects that it would just fail again because of her strong seizures and her lack of a deep groove for her knee cap to sit in. So we're considering a patellectomy to completely remove her knee cap.
We were more excited about this procedure after our appointment with the orthopedist last week, but today we learned more about possible risks. There's always the risk that the tendons that will stretch over the space where her knee cap was will rupture, making the recovery period very long with Annie's leg in a straight-leg brace 24 hours a day for 6-8 weeks. There's also the concern that sitting with her foot out straight for that long again might further worsen her scoliosis. But we also learned today that when the knee cap is removed, pressure gets distributed differently in that joint which can affect the growth plates. Often after a patellectomy, the patient's leg will start growing sideways at an angle below the knee. Surgery is then required to alter or modify the opposite growth plate to compensate for the uneven growth. It's not positive that this problem will even occur, but it's definitely a possibility. And when it would happen is unknown too--it could occur within a year of surgery or it might not happen until Annie hits another big growth spurt closer to puberty.
Before we met with Annie's orthopedist today, he contacted a different pediatric orthopedist who has the most experience in patellectomies. After hearing about Annie, this other doctor suggested that she might benefit from a hamstring lengthening procedure to help reduce the amount of tension and strain on her knee without the patella. Because the orthopedist we saw today has very little experience with patellectomies, he is referring us to this other doctor who would ultimately do the surgery together with our current doctor. So hopefully we'll be seeing the new doctor soon and get some more answers and information so we can make some better informed decisions on how to best treat Annie.
We know that we could always elect to do nothing, but we fear that these repeated dislocations will start to cause more pain like they did before her first surgery. We also know from her last knee scope that these dislocations are causing damage to her femur that will become more painful. We also aren't too excited about the idea of her needing to wear a knee brace the rest of her life--which doesn't even completely prevent the dislocations. So we're really praying for inspiration on how to best treat Annie, keeping in mind that our goals for her are to be as happy and comfortable as possible and be able to enjoy her life to the fullest. The big question... How do we do that when we can't see the future? We obviously wouldn't have put her through the first knee surgery if we would have known it was going to fail, but we felt like that was the best thing to do at the time. So please pray that we'll be able to know what will be best for Annie and help her to have the happiest life that she can.
It's amazing to me that in the short year that we've lived here, we've managed to now have 3 different orthopedists for Annie. Our first is Dr. Scherl who has been helping to monitor Annie's scoliosis, dislocated hip, tight heel cords, and now her dislocated knee. For such an involved knee surgery, Dr. Scherl then referred us to our second orthopedist Dr. Dietrich (considered to be a sports medicine doctor) who reconstructed her knee last December and who we met with today. Dr. Dietrich is now referring us to our third orthopedist Dr. Esposito (who is also in Dr. Scherl's practice), who is known to be the best pediatric orthopedist in Omaha.
Now that we've been here a year, we counted to see how many doctor appointments Annie has had since we moved. In just the past year Annie has had 66 doctor appointments, an average of one every 5 days. How come it seems like we've had a lot more than that?
We appreciate all our friends and family who show such a genuine concern for Annie. Please continue to keep her in your thoughts and prayers as we make decisions in her behalf.
So we're back to square one--exactly where we were 4 months ago before she had her first knee surgery. The doctor doesn't suggest repeating this same procedure to tether her knee cap in place with a tendon graft because he expects that it would just fail again because of her strong seizures and her lack of a deep groove for her knee cap to sit in. So we're considering a patellectomy to completely remove her knee cap.
We were more excited about this procedure after our appointment with the orthopedist last week, but today we learned more about possible risks. There's always the risk that the tendons that will stretch over the space where her knee cap was will rupture, making the recovery period very long with Annie's leg in a straight-leg brace 24 hours a day for 6-8 weeks. There's also the concern that sitting with her foot out straight for that long again might further worsen her scoliosis. But we also learned today that when the knee cap is removed, pressure gets distributed differently in that joint which can affect the growth plates. Often after a patellectomy, the patient's leg will start growing sideways at an angle below the knee. Surgery is then required to alter or modify the opposite growth plate to compensate for the uneven growth. It's not positive that this problem will even occur, but it's definitely a possibility. And when it would happen is unknown too--it could occur within a year of surgery or it might not happen until Annie hits another big growth spurt closer to puberty.
Before we met with Annie's orthopedist today, he contacted a different pediatric orthopedist who has the most experience in patellectomies. After hearing about Annie, this other doctor suggested that she might benefit from a hamstring lengthening procedure to help reduce the amount of tension and strain on her knee without the patella. Because the orthopedist we saw today has very little experience with patellectomies, he is referring us to this other doctor who would ultimately do the surgery together with our current doctor. So hopefully we'll be seeing the new doctor soon and get some more answers and information so we can make some better informed decisions on how to best treat Annie.
We know that we could always elect to do nothing, but we fear that these repeated dislocations will start to cause more pain like they did before her first surgery. We also know from her last knee scope that these dislocations are causing damage to her femur that will become more painful. We also aren't too excited about the idea of her needing to wear a knee brace the rest of her life--which doesn't even completely prevent the dislocations. So we're really praying for inspiration on how to best treat Annie, keeping in mind that our goals for her are to be as happy and comfortable as possible and be able to enjoy her life to the fullest. The big question... How do we do that when we can't see the future? We obviously wouldn't have put her through the first knee surgery if we would have known it was going to fail, but we felt like that was the best thing to do at the time. So please pray that we'll be able to know what will be best for Annie and help her to have the happiest life that she can.
It's amazing to me that in the short year that we've lived here, we've managed to now have 3 different orthopedists for Annie. Our first is Dr. Scherl who has been helping to monitor Annie's scoliosis, dislocated hip, tight heel cords, and now her dislocated knee. For such an involved knee surgery, Dr. Scherl then referred us to our second orthopedist Dr. Dietrich (considered to be a sports medicine doctor) who reconstructed her knee last December and who we met with today. Dr. Dietrich is now referring us to our third orthopedist Dr. Esposito (who is also in Dr. Scherl's practice), who is known to be the best pediatric orthopedist in Omaha.
Now that we've been here a year, we counted to see how many doctor appointments Annie has had since we moved. In just the past year Annie has had 66 doctor appointments, an average of one every 5 days. How come it seems like we've had a lot more than that?
We appreciate all our friends and family who show such a genuine concern for Annie. Please continue to keep her in your thoughts and prayers as we make decisions in her behalf.
Tuesday, March 2, 2010
More Knee Troubles--Annie's Orthopedic Knee Appointment
We saw Annie's orthopedic knee doctor today for her supposedly last post-op appointment from her surgery in December to correct her painfully dislocating knee cap. Little did the doctor know that we'd be coming today to tell him that her knee cap is dislocating again. They did x-rays which showed everything to look good and in place (unless she bends her knee) but the groove that her knee cap sits in is so shallow that it is easily coming out.
Because of the shallow groove and the fact that she regularly has hard seizures that yank her knee cap out of place, the doctor is suggesting two options: we can redo her previous procedure with a new tendon graft that will hopefully be strong enough to counteract her strong muscles during a seizure, or we can completely remove her patella. Justin and I don't feel like repeating the same procedure again would be beneficial or be any more successful the second time around, simply because of factors we can't control (shallow groove and seizures). So for now, we are planning on her having a patellectomy. But before the doctor would schedule her for surgery, he wants to do an MRI next Monday to get a better idea of why the tendon graft failed. We'll then meet with him on Wednesday to go over the MRI results and talk more about surgery.
From what he has already told us, the patellectomy will have a comparable recovery to her previous knee surgery--about a 3 month recovery period with her leg in a straight leg immobilizing knee brace for about 6-8 weeks or so. Removing her patella will cause a slight loss of power to her lower leg, but since she doesn't ambulate that shouldn't be a problem. She will however, always require a knee brace while standing in her stander. The procedure will completely remove her knee cap, and then will require that the tendons connecting her upper and lower leg to the knee cap be connected to each other over the space where the knee cap normally is. This is why she will need to have her leg out straight and immobilized for so long after surgery--bending her leg before those sewn-together tendons have healed could stretch then too much and cause them to rupture. So we're in for another long and cumbersome recovery. We're hoping to get her in to surgery as soon as possible to help her get fully recovered before the summer months come.
I feel so overwhelmed to be still dealing with knee problems--having one surgery fail and needing to start all over. It's been about one year since her knee troubles first started... Last spring we noticed that Annie's knee was becoming very difficult to bend and would pop whenever we bent it. Then over the summer months it started hurting her every time we bent her knee. Then finally last August her knee cap became locked out of place and we had to take her to the ER to get it put back in place. That is when we realized that all the popping we'd been hearing and the pain she'd been having was due to her knee cap dislocating. I still can't believe we didn't somehow figure it out sooner. However, she didn't have surgery on it right away last fall because she was having terrible sleep apnea and the surgeons wouldn't operate on her until after she had her tonsillectomy. She had that done in October, and then we had to wait 8 weeks for her throat to heal before she could be intubated again. She then had her first knee surgery in December and today's appointment was supposed to be her last follow-up.
I just want Annie to be happy and comfortable. It's been such a difficult year for her--spending a lot of time recovering from surgeries, having to wear a knee brace every day, and experiencing a lot of pain. I long for the days when I can just pick her up and not worry about hurting her or throwing her knee cap out of place. It's been difficult if not impossible to hold her on my lap without her knee cap dislocating or making her uncomfortable, and I can't wait to be able to move her and hold her more easily again. She is such a little trooper going through everything she goes through. We love her so much and can't wait to get these next few months behind us and hopefully have a much happier Annie soon!
Because of the shallow groove and the fact that she regularly has hard seizures that yank her knee cap out of place, the doctor is suggesting two options: we can redo her previous procedure with a new tendon graft that will hopefully be strong enough to counteract her strong muscles during a seizure, or we can completely remove her patella. Justin and I don't feel like repeating the same procedure again would be beneficial or be any more successful the second time around, simply because of factors we can't control (shallow groove and seizures). So for now, we are planning on her having a patellectomy. But before the doctor would schedule her for surgery, he wants to do an MRI next Monday to get a better idea of why the tendon graft failed. We'll then meet with him on Wednesday to go over the MRI results and talk more about surgery.
From what he has already told us, the patellectomy will have a comparable recovery to her previous knee surgery--about a 3 month recovery period with her leg in a straight leg immobilizing knee brace for about 6-8 weeks or so. Removing her patella will cause a slight loss of power to her lower leg, but since she doesn't ambulate that shouldn't be a problem. She will however, always require a knee brace while standing in her stander. The procedure will completely remove her knee cap, and then will require that the tendons connecting her upper and lower leg to the knee cap be connected to each other over the space where the knee cap normally is. This is why she will need to have her leg out straight and immobilized for so long after surgery--bending her leg before those sewn-together tendons have healed could stretch then too much and cause them to rupture. So we're in for another long and cumbersome recovery. We're hoping to get her in to surgery as soon as possible to help her get fully recovered before the summer months come.
I feel so overwhelmed to be still dealing with knee problems--having one surgery fail and needing to start all over. It's been about one year since her knee troubles first started... Last spring we noticed that Annie's knee was becoming very difficult to bend and would pop whenever we bent it. Then over the summer months it started hurting her every time we bent her knee. Then finally last August her knee cap became locked out of place and we had to take her to the ER to get it put back in place. That is when we realized that all the popping we'd been hearing and the pain she'd been having was due to her knee cap dislocating. I still can't believe we didn't somehow figure it out sooner. However, she didn't have surgery on it right away last fall because she was having terrible sleep apnea and the surgeons wouldn't operate on her until after she had her tonsillectomy. She had that done in October, and then we had to wait 8 weeks for her throat to heal before she could be intubated again. She then had her first knee surgery in December and today's appointment was supposed to be her last follow-up.
I just want Annie to be happy and comfortable. It's been such a difficult year for her--spending a lot of time recovering from surgeries, having to wear a knee brace every day, and experiencing a lot of pain. I long for the days when I can just pick her up and not worry about hurting her or throwing her knee cap out of place. It's been difficult if not impossible to hold her on my lap without her knee cap dislocating or making her uncomfortable, and I can't wait to be able to move her and hold her more easily again. She is such a little trooper going through everything she goes through. We love her so much and can't wait to get these next few months behind us and hopefully have a much happier Annie soon!
Friday, February 26, 2010
One Crazy Day!
Annie always keeps my life exciting, and yesterday was no exception. I took her to a combined orthotist/orthopedist appointment today--left the house at 8:30am. (I lucked out being able to combine two appointments into one, fortunately.) So this morning Annie got her third pair of AFOs since her ankle surgery. Fortunately, they seem to fit wonderfully and are MUCH easier to put on. Standard AFOs just weren't working for her even before surgery, but we thought her surgery would make it so she could wear standard AFOs. It took two pair to learn that she still can't, so this third pair is the "turbo" style with an inner boot that makes them not only more comfortable, but much easier to get on. So yea for that!
We then met with Annie's orthopedist for another post-op follow-up on her ankle. Everything is looking good, but she said we need to be much more aggressive with her stretching. Her ankle seems to have very limited range of motion, so repeated stretching throughout the day will help with that and insure that we're not back in the OR for another heel cord lengthening any time soon.
I then took Annie to school around 10:45am, went home and Justin went to work (he had been home with Molly and Lexie while I was out with Annie.) However, at 11:30, the school called to tell me that Annie had been seizing and vomiting for the past 30 minutes and I needed to come pick her up. She has been vomiting inconsistently since last Sunday, but had no other symptoms. But with this going on so long now, I decided to first call the pediatrician, hoping we could go straight there from the school, but didn't have such luck.
So I loaded up Molly and Lexie to go get Annie from school, got home, fed the girls lunch, changed Annie, gave her meds, and put Lexie down to nap. Then at 1:30, after having to wake Lexie from her nap, I loaded all 3 girls into the van again to take Annie to the pediatrician. I wasn't worried about having the other girls there since the pediatrician's office is so entertaining for them--I just had no idea what it was going to turn in to. The pediatrician checked out Annie and cathed her to check for a UTI. The UA came back negative, but we'll get the culture results in a couple of days. The doctor then thought she should have some blood work done to check her pancreas and liver and CBC. But since Annie's veins are so bad and she is sometimes nearly impossible to stick, the pediatrician asked us to go to the lab at the children's hospital where they have more experience with difficult veins.
I thought it'd be best to go straight there while we were already out for the day, but knew it would probably be a long wait and difficult with Lexie and Molly especially so late in the afternoon. I called Justin at work just to let him know what was going on, and he kindly said he would meet me at the hospital to help out. It took about 25 minutes to drive up there, 15 minutes to register, and then we had to wait over 30 minutes to get into the lab. I was SO thankful to have Justin there to help entertain and distract Molly and Lexie! Once I got Annie into the lab, I started pulling up Annie's sleeves and explaining to the phlebotomist that Annie is a really difficult stick, when she interrupted me and said all they need is a finger poke! I couldn't believe it! We drove all that way, and waited for so long, just to have them do a finger poke that could have been done at the doctor's office!
So we left a little frustrated, exhausted, and running out of patience with our hungry and tired children. Luckily there was a Wendy's close by. By the time we got home around 5:45pm, the pediatrician had already called and left a message saying that Annie's blood work had all been normal except for a slightly elevated white blood cell count. Unless her urine culture comes back positive, we're guessing she's just gotten some kind of stomach bug or cold that's making her gag and throw up. After our long day, we had everyone in bed by 6:30!
Today Annie seems to be doing fine as long as we don't give her pediasure. So we're just pushing other fluids to help keep her hydrated. She's having more seizures, but I think that's because her body is so out of whack and she's probably been vomiting up her meds. She's at home today simply because I don't want to make her teachers cope with more vomit or seizures. She's actually pretty happy and smiley. So we should have a somewhat calm day today, and our in-home nurse is coming tonight to give us a break. And we just hope Annie will be back to her normal self soon.
We then met with Annie's orthopedist for another post-op follow-up on her ankle. Everything is looking good, but she said we need to be much more aggressive with her stretching. Her ankle seems to have very limited range of motion, so repeated stretching throughout the day will help with that and insure that we're not back in the OR for another heel cord lengthening any time soon.
I then took Annie to school around 10:45am, went home and Justin went to work (he had been home with Molly and Lexie while I was out with Annie.) However, at 11:30, the school called to tell me that Annie had been seizing and vomiting for the past 30 minutes and I needed to come pick her up. She has been vomiting inconsistently since last Sunday, but had no other symptoms. But with this going on so long now, I decided to first call the pediatrician, hoping we could go straight there from the school, but didn't have such luck.
So I loaded up Molly and Lexie to go get Annie from school, got home, fed the girls lunch, changed Annie, gave her meds, and put Lexie down to nap. Then at 1:30, after having to wake Lexie from her nap, I loaded all 3 girls into the van again to take Annie to the pediatrician. I wasn't worried about having the other girls there since the pediatrician's office is so entertaining for them--I just had no idea what it was going to turn in to. The pediatrician checked out Annie and cathed her to check for a UTI. The UA came back negative, but we'll get the culture results in a couple of days. The doctor then thought she should have some blood work done to check her pancreas and liver and CBC. But since Annie's veins are so bad and she is sometimes nearly impossible to stick, the pediatrician asked us to go to the lab at the children's hospital where they have more experience with difficult veins.
I thought it'd be best to go straight there while we were already out for the day, but knew it would probably be a long wait and difficult with Lexie and Molly especially so late in the afternoon. I called Justin at work just to let him know what was going on, and he kindly said he would meet me at the hospital to help out. It took about 25 minutes to drive up there, 15 minutes to register, and then we had to wait over 30 minutes to get into the lab. I was SO thankful to have Justin there to help entertain and distract Molly and Lexie! Once I got Annie into the lab, I started pulling up Annie's sleeves and explaining to the phlebotomist that Annie is a really difficult stick, when she interrupted me and said all they need is a finger poke! I couldn't believe it! We drove all that way, and waited for so long, just to have them do a finger poke that could have been done at the doctor's office!
So we left a little frustrated, exhausted, and running out of patience with our hungry and tired children. Luckily there was a Wendy's close by. By the time we got home around 5:45pm, the pediatrician had already called and left a message saying that Annie's blood work had all been normal except for a slightly elevated white blood cell count. Unless her urine culture comes back positive, we're guessing she's just gotten some kind of stomach bug or cold that's making her gag and throw up. After our long day, we had everyone in bed by 6:30!
Today Annie seems to be doing fine as long as we don't give her pediasure. So we're just pushing other fluids to help keep her hydrated. She's having more seizures, but I think that's because her body is so out of whack and she's probably been vomiting up her meds. She's at home today simply because I don't want to make her teachers cope with more vomit or seizures. She's actually pretty happy and smiley. So we should have a somewhat calm day today, and our in-home nurse is coming tonight to give us a break. And we just hope Annie will be back to her normal self soon.
Wednesday, February 24, 2010
Annie's IEP, CPAP, Ankle & Knee, G-button, and Eye Appointment Update--Whew!
Annie's IEP School Meeting
It's been another busy couple of weeks for Annie. We had her IEP school meeting last week which actually went very smoothly. We're excited about the things Annie is doing in school and the ways she's learning to interact with others more. Unfortunately Annie won't qualify for the extended school year (ESY) summer program for children with disabilities. We have been frustrated by that since she was able to attend ESY in Texas, and also because we have such limited in-home nursing hours here in Nebraska. (In Texas we got 15 hours a week, and here we get 4.)
So that means we have very limited respite available over the summer while Annie is at home all day which makes errands and outings, meeting all of Annie's needs, and caring for two other small children very difficult. Nebraska's state disability programs are so great at helping with all of Annie's other needs, we just can't figure out why they limit in-home nursing hours so dramatically. However, we somehow managed this same situation last summer (our first in Nebraska) when Annie didn't qualify for ESY then either. I have learned how to pull a grocery cart full of groceries and two children while pushing Annie in her wheelchair with one hand. Not easy, but possible. We'll definitely need to stick to a strict schedule this summer.
Annie's CPAP Follow-up
We took Annie to the pulmonology clinic yesterday to review her CPAP titration sleep study and CPAP memory stick data. The sleep study started with her CPAP at pressure level 4, then watched how she responded. After still seeing lots of obstructions they increased the pressure by one level and watched again. They got her to level 8 when they first started noticing a decrease in the number of her obstructions, but since the sleep study was almost over by then, they increased her to level 10, but didn't have enough time to collect data on how she tolerated a level 10. So they are prescribing a level 9 for her and instructing us to watch how she does and if we don't see an improvement in her sleep and alertness during the day, they will consider increasing the pressure further. I was surprised to hear that she required a level 9 and would still have some obstructions at that level. It reminds us of really how terrible her sleep apnea is, even with her tonsils removed. So she'll sleep with a pressure of 9 tonight and we'll see how she does. Hopefully it will improve her sleep, decrease her seizures, and help her be more alert and happy during the day!
Her CPAP machine has a memory stick in it that records how much Annie is using it and at what times she's pulling it off her face or having leakage around her nose. We were pleasantly surprised to see data for the first time yesterday showing her use of CPAP. Most mornings when we go into Annie's room, her mask has slipped off her nose onto her cheek, but we've never been sure at what point that is happening during the night. The data we got yesterday showed that Annie is actually keeping the CPAP on most of the night, usually pulling it off around 5:00am or so. That was incredibly encouraging to us! Way to go Annie! It's nice to come away from an appointment feeling excited and hopeful rather than discouraged for once!
Ankle and Knee Concerns
Tomorrow is Annie's orthopedist follow-up for her heel cord lengthening that happened last December. We are nervous because she doesn't move that foot or ankle anymore. We're thinking that her ankle is still just so stiff from being in a cast for 6 weeks and now needing to be in her AFOs (ankle and foot orthotics) all day. So we're expecting the orthopedist to suggest some concentrated physical therapy on her ankle to get it to move and improve her range of motion. The area around her 5-6" long incision is also very lumpy under her skin which I didn't expect, and the skin itself goes rather blue anytime Annie's foot or leg is cold. We doubt there is anything seriously wrong, but it will be nice to get some answers tomorrow.
We are definitely more nervous about Annie's knee, however. Last December she had knee surgery to correct a dislocating knee cap that was extremely painful. She has been wearing a flexible knee brace since mid-January, but we have still been trying not to bend it much at all while it continues to heal. This past week as we've been starting to slowly bend her knee more (with the brace on) we've been noticing some popping. With the brace on it has been hard to tell if it has been actually dislocating or just making a popping sound.
However, this morning as we began getting her ready for her shower, we took her knee brace off. She was having her myoclonic seizures (spasm-like jerks) and we noticed that with each spasm, her kneecap was being dislocated. We would slide it back in place after each dislocation, but it continued to dislocate as her knee bent during her shower and afterwards. None of the dislocations were causing her pain, but with the extensive work they did on her knee, we know it should not be dislocating at all. Her next follow-up with her sports medicine doctor is next Tuesday, so we'll talk to him all about it then. I'm really hoping we aren't facing yet another surgery on her knee--one has been more than enough! But we also don't want to let her knee to continue dislocating because we know of the damage that causes to her joint and the pain and swelling that will inevitably follow. It has been about 9 months since her kneecap started dislocating and we're ready to finally get this issue resolved.
G-Button Update
Several weeks ago Annie was having pain around her G-tube stoma. There was no sign of infection so the doctor ordered a full abdominal sonogram which showed no signs of problems either. I did, however, feel inspired looking at the images around her stoma that her G-button size might be too small since we have never gotten her a larger size since she was 2 years old. After mentioning that to the doctor, he was surprised she was still wearing the same size button from 5 years ago and suggested we see a surgeon to help us determine if that was the real issue and to determine the correct size of button she would need. Since then her pain has subsided, so we have delayed contacting the surgeon because of all the other appointments we've had lately.
However, Annie has been having incredibly large amounts of air in her tummy the last few days causing her to vomit several times a day. We can't figure out what it would be due to, but decided to change out her G-button to see if that helped. It probably won't affect her vomiting--we'll just continue to vent her frequently until it subsides or we decide she needs to see a doctor--but the new G-button I put in her today seems to fit well, so we'll watch to see if this new one starts causing her pain, and if so, then we'll take her to the surgeon. Otherwise, with so many other concerns right now, I just can't manage to make it a priority unless it starts getting worse.
Ophthalmology Appointment
Because Annie's anticonvulsant (Sabril or vigabatrin) was recently FDA approved, and because it can cause vision loss, the FDA is now mandating that patients get an eye exam every 3 months in order to get refills of their Sabril. For the past 7 years we have been getting this drug from Canada and paying for it fully out of pocket. (Insurance companies won't cover drugs that are not FDA approved.) We paid about $120 a month for this drug from Canada, but now that it is FDA approved and available in the US, our assigned one of four pharmacies in the U.S. that carries Sabril is charging us $3500 for a month's supply! Fortunately our insurance now covers it 100%. So it's a huge blessing that we no longer have to pay $120 a month to get this drug from Canada, but now the FDA has an incredible amount of paperwork for us, the ophthalmologist, and the neurologist, and eye exams that have to occur every 3 months which makes for more appointments for us. Fortunately, the appointments are short, but we still have to drive 30 minutes away. I guess it's a small price to pay to now have her anticonvulsant covered by insurance. We'll definitely get to know our ophthalmologist well!
It's been another busy couple of weeks for Annie. We had her IEP school meeting last week which actually went very smoothly. We're excited about the things Annie is doing in school and the ways she's learning to interact with others more. Unfortunately Annie won't qualify for the extended school year (ESY) summer program for children with disabilities. We have been frustrated by that since she was able to attend ESY in Texas, and also because we have such limited in-home nursing hours here in Nebraska. (In Texas we got 15 hours a week, and here we get 4.)
So that means we have very limited respite available over the summer while Annie is at home all day which makes errands and outings, meeting all of Annie's needs, and caring for two other small children very difficult. Nebraska's state disability programs are so great at helping with all of Annie's other needs, we just can't figure out why they limit in-home nursing hours so dramatically. However, we somehow managed this same situation last summer (our first in Nebraska) when Annie didn't qualify for ESY then either. I have learned how to pull a grocery cart full of groceries and two children while pushing Annie in her wheelchair with one hand. Not easy, but possible. We'll definitely need to stick to a strict schedule this summer.
Annie's CPAP Follow-up
We took Annie to the pulmonology clinic yesterday to review her CPAP titration sleep study and CPAP memory stick data. The sleep study started with her CPAP at pressure level 4, then watched how she responded. After still seeing lots of obstructions they increased the pressure by one level and watched again. They got her to level 8 when they first started noticing a decrease in the number of her obstructions, but since the sleep study was almost over by then, they increased her to level 10, but didn't have enough time to collect data on how she tolerated a level 10. So they are prescribing a level 9 for her and instructing us to watch how she does and if we don't see an improvement in her sleep and alertness during the day, they will consider increasing the pressure further. I was surprised to hear that she required a level 9 and would still have some obstructions at that level. It reminds us of really how terrible her sleep apnea is, even with her tonsils removed. So she'll sleep with a pressure of 9 tonight and we'll see how she does. Hopefully it will improve her sleep, decrease her seizures, and help her be more alert and happy during the day!
Her CPAP machine has a memory stick in it that records how much Annie is using it and at what times she's pulling it off her face or having leakage around her nose. We were pleasantly surprised to see data for the first time yesterday showing her use of CPAP. Most mornings when we go into Annie's room, her mask has slipped off her nose onto her cheek, but we've never been sure at what point that is happening during the night. The data we got yesterday showed that Annie is actually keeping the CPAP on most of the night, usually pulling it off around 5:00am or so. That was incredibly encouraging to us! Way to go Annie! It's nice to come away from an appointment feeling excited and hopeful rather than discouraged for once!
Ankle and Knee Concerns
Tomorrow is Annie's orthopedist follow-up for her heel cord lengthening that happened last December. We are nervous because she doesn't move that foot or ankle anymore. We're thinking that her ankle is still just so stiff from being in a cast for 6 weeks and now needing to be in her AFOs (ankle and foot orthotics) all day. So we're expecting the orthopedist to suggest some concentrated physical therapy on her ankle to get it to move and improve her range of motion. The area around her 5-6" long incision is also very lumpy under her skin which I didn't expect, and the skin itself goes rather blue anytime Annie's foot or leg is cold. We doubt there is anything seriously wrong, but it will be nice to get some answers tomorrow.
We are definitely more nervous about Annie's knee, however. Last December she had knee surgery to correct a dislocating knee cap that was extremely painful. She has been wearing a flexible knee brace since mid-January, but we have still been trying not to bend it much at all while it continues to heal. This past week as we've been starting to slowly bend her knee more (with the brace on) we've been noticing some popping. With the brace on it has been hard to tell if it has been actually dislocating or just making a popping sound.
However, this morning as we began getting her ready for her shower, we took her knee brace off. She was having her myoclonic seizures (spasm-like jerks) and we noticed that with each spasm, her kneecap was being dislocated. We would slide it back in place after each dislocation, but it continued to dislocate as her knee bent during her shower and afterwards. None of the dislocations were causing her pain, but with the extensive work they did on her knee, we know it should not be dislocating at all. Her next follow-up with her sports medicine doctor is next Tuesday, so we'll talk to him all about it then. I'm really hoping we aren't facing yet another surgery on her knee--one has been more than enough! But we also don't want to let her knee to continue dislocating because we know of the damage that causes to her joint and the pain and swelling that will inevitably follow. It has been about 9 months since her kneecap started dislocating and we're ready to finally get this issue resolved.
G-Button Update
Several weeks ago Annie was having pain around her G-tube stoma. There was no sign of infection so the doctor ordered a full abdominal sonogram which showed no signs of problems either. I did, however, feel inspired looking at the images around her stoma that her G-button size might be too small since we have never gotten her a larger size since she was 2 years old. After mentioning that to the doctor, he was surprised she was still wearing the same size button from 5 years ago and suggested we see a surgeon to help us determine if that was the real issue and to determine the correct size of button she would need. Since then her pain has subsided, so we have delayed contacting the surgeon because of all the other appointments we've had lately.
However, Annie has been having incredibly large amounts of air in her tummy the last few days causing her to vomit several times a day. We can't figure out what it would be due to, but decided to change out her G-button to see if that helped. It probably won't affect her vomiting--we'll just continue to vent her frequently until it subsides or we decide she needs to see a doctor--but the new G-button I put in her today seems to fit well, so we'll watch to see if this new one starts causing her pain, and if so, then we'll take her to the surgeon. Otherwise, with so many other concerns right now, I just can't manage to make it a priority unless it starts getting worse.
Ophthalmology Appointment
Because Annie's anticonvulsant (Sabril or vigabatrin) was recently FDA approved, and because it can cause vision loss, the FDA is now mandating that patients get an eye exam every 3 months in order to get refills of their Sabril. For the past 7 years we have been getting this drug from Canada and paying for it fully out of pocket. (Insurance companies won't cover drugs that are not FDA approved.) We paid about $120 a month for this drug from Canada, but now that it is FDA approved and available in the US, our assigned one of four pharmacies in the U.S. that carries Sabril is charging us $3500 for a month's supply! Fortunately our insurance now covers it 100%. So it's a huge blessing that we no longer have to pay $120 a month to get this drug from Canada, but now the FDA has an incredible amount of paperwork for us, the ophthalmologist, and the neurologist, and eye exams that have to occur every 3 months which makes for more appointments for us. Fortunately, the appointments are short, but we still have to drive 30 minutes away. I guess it's a small price to pay to now have her anticonvulsant covered by insurance. We'll definitely get to know our ophthalmologist well!
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