Both Katie and Michael are going to start taking a new heart medication this month as a result of our trip to Johns Hopkins. They are going to be changing from Atenolol to Losartin. The first day for Katie was Friday. Instead of taking one pill per night, she is now going to be taking 1.5. The first day for Michael was Saturday. Instead of taking one pill in the morning and two at night, he will now just be taking 1.5 pills at night. I hope that this will make things a bit easier as they will now be taking the same dosage. This is due to the fact that their weight is very close to each other.
Michael doesn't seem to be having any problems adjusting to the new medication but Katie was extremely tired today. She and Todd were out visiting his mom and doing some shopping. Todd tol me that she fell asleep in the car 3 different times, the first time being at 12:30pm. That is extremely rare for her and I can think of no other cause than the change in medication. We will definitely be keeping an eye on her. The funniest part about it was that she was ready for bed at the regular time after all of those catnaps! Normally those would result in a really late bedtime.
Showing posts with label Marfan. Show all posts
Showing posts with label Marfan. Show all posts
Sunday, July 29, 2012
Wednesday, May 2, 2012
Wednesday, February 1, 2012
Awareness is key
The heart is a key symbol of the month of February, not only for Valentine's Day but because it is also National Marfan Awareness Month. I think it's so important to get as much information out there as possible about this genetic disorder, especially since it affects Todd, Michael and Katie.
I read this article earlier today and found it to be very interesting and informative. Just knowing that you have the disorder is key to getting the proper treatment and being seen by the specialists that are needed. I feel extremely fortunate that our family is able to get the care that is needed for the best quality of life. I know that everyone is not so lucky.
I read this article earlier today and found it to be very interesting and informative. Just knowing that you have the disorder is key to getting the proper treatment and being seen by the specialists that are needed. I feel extremely fortunate that our family is able to get the care that is needed for the best quality of life. I know that everyone is not so lucky.
Monday, July 18, 2011
What's Up Next
Well, I figured that the rest of the summer would be pretty low-key, with the exception of our trip to Baltimore for Todd, Katie and Michael's appointments at Johns Hopkins. We needed a break after casting the first week of June, many doctor's appointments through the rest of the month and hernia surgery the first week of July. Looks like I was wrong.
Thursday we went for a follow-up visit to the ENT. Michael had his left ear tube removed at the end of May and his right ear tube was removed last August. We have been waiting for the hole to close in his right ear since then. The ENT told me that the holes do not close up in 3% of the patients with tubes. Guess who is in that 3%? I wasn't surprised when he said Michael. Thankfully, the right ear closed up as expected in just 6 weeks.
The ENT said that his eardrum would have to be repaired. He said that we could have it done anytime as there was no rush but that it would have to be done at some point. We decided to get it done now for 2 reasons: Michael is starting kindergarten in the middle of August and I don't want him to miss any school so early and since he already had surgery this year, we shouldn't have to pay much more to meet the out of pocket maximum for our insurance. I also want Michael to be able to go swimming without having to wear earplugs all the time.
The surgery is scheduled for August 15th, just 4 short days before the first day of school. The doctor said that the recovery time is minimal but you do have to come back to get your stitches removed 10 days post surgery as they take a small skin graft from behind his ear to patch the eardrum. Seems like it's always something here!
Thursday we went for a follow-up visit to the ENT. Michael had his left ear tube removed at the end of May and his right ear tube was removed last August. We have been waiting for the hole to close in his right ear since then. The ENT told me that the holes do not close up in 3% of the patients with tubes. Guess who is in that 3%? I wasn't surprised when he said Michael. Thankfully, the right ear closed up as expected in just 6 weeks.
The ENT said that his eardrum would have to be repaired. He said that we could have it done anytime as there was no rush but that it would have to be done at some point. We decided to get it done now for 2 reasons: Michael is starting kindergarten in the middle of August and I don't want him to miss any school so early and since he already had surgery this year, we shouldn't have to pay much more to meet the out of pocket maximum for our insurance. I also want Michael to be able to go swimming without having to wear earplugs all the time.
The surgery is scheduled for August 15th, just 4 short days before the first day of school. The doctor said that the recovery time is minimal but you do have to come back to get your stitches removed 10 days post surgery as they take a small skin graft from behind his ear to patch the eardrum. Seems like it's always something here!
Thursday, June 16, 2011
All Clear
We had a marathon day of doctor's appointments this past Monday.
The first appointment was the opthalmologist for Katie and Michael. Neither of them had to get a new prescription for their glasses since the last visit 6 months ago. Michael's lens dislocation has remained the same and Katie's glasses are fitting her properly, even though I had my doubts. We will go back again in 6 months for a re-check. This was the first time that we were out of the office in less than 2 hours. Between dilation and waiting to get in to see the doctor, we are usually there for a while.
The second appointment of the day was Michael's physical therapy. The therapist checked out his legs since he got the casts removed on Friday. She said that he looked great. The only two things that we need to do now are to keep up with his ankle exercises and get his shoe inserts adjusted. Michael is not a big fan of doing the exercises at home but I may use a chart to get a prize at the end of the month. We'll see how it goes.
Next we went to get his inserts adjusted. We did not have an appointment for this but I called the clinic that makes the inserts to see if they could fit us in. They could so we headed there. The inserts had more padding added in certain areas to help give Michael's foot a boost. He has done well with them since the adjustment.
The final appointment of the day was the cardiologist for Michael. This was a pre-op checkup for his hernia surgery. An echocardiogram was done, as well as a physical exam. Michael's echo looked good. His aorta was changed only 1 mm and they said that this could be due to the different machines used to do echos. His cardiologist gave him the all clear to proceed with the hernia surgery. I am still going to email the results to Johns Hopkins so that they can review but it looks like Friday, July 8th is going to be the surgery day.
Amazingly, I made it through the day with 3 kids going to appointment after appointment with very few breaks for them. However, it's not something I want to do again anytime soon!
The first appointment was the opthalmologist for Katie and Michael. Neither of them had to get a new prescription for their glasses since the last visit 6 months ago. Michael's lens dislocation has remained the same and Katie's glasses are fitting her properly, even though I had my doubts. We will go back again in 6 months for a re-check. This was the first time that we were out of the office in less than 2 hours. Between dilation and waiting to get in to see the doctor, we are usually there for a while.
The second appointment of the day was Michael's physical therapy. The therapist checked out his legs since he got the casts removed on Friday. She said that he looked great. The only two things that we need to do now are to keep up with his ankle exercises and get his shoe inserts adjusted. Michael is not a big fan of doing the exercises at home but I may use a chart to get a prize at the end of the month. We'll see how it goes.
Next we went to get his inserts adjusted. We did not have an appointment for this but I called the clinic that makes the inserts to see if they could fit us in. They could so we headed there. The inserts had more padding added in certain areas to help give Michael's foot a boost. He has done well with them since the adjustment.
The final appointment of the day was the cardiologist for Michael. This was a pre-op checkup for his hernia surgery. An echocardiogram was done, as well as a physical exam. Michael's echo looked good. His aorta was changed only 1 mm and they said that this could be due to the different machines used to do echos. His cardiologist gave him the all clear to proceed with the hernia surgery. I am still going to email the results to Johns Hopkins so that they can review but it looks like Friday, July 8th is going to be the surgery day.
Amazingly, I made it through the day with 3 kids going to appointment after appointment with very few breaks for them. However, it's not something I want to do again anytime soon!
Tuesday, June 7, 2011
Hernia Update
Today we had Michael's consult for his hernia surgery. The doctor examined him and determined that he has a small hernia on one side and a larger one on the other side. The type of hernia that he has is a inguinal hernia. The surgeon will repair it with an outpatient procedure. The surgery is scheduled for Friday, July 8th.
Michael is on heart medication to slow the enlargement of his aorta from Marfan syndrome. He will have a cardiac consultation, as well as an echocardiogram, prior to the surgery. That is scheduled for this upcoming Monday and then we will go from there regarding the surgery. Hopefully that will be a good visit and the surgery will simply be a routine procedure.
Michael is on heart medication to slow the enlargement of his aorta from Marfan syndrome. He will have a cardiac consultation, as well as an echocardiogram, prior to the surgery. That is scheduled for this upcoming Monday and then we will go from there regarding the surgery. Hopefully that will be a good visit and the surgery will simply be a routine procedure.
Sunday, June 5, 2011
Casting - Red, Green and Black
Michael got his first set of casts on his lower legs and feet last Friday. The procedure is serial casting and it helps to improve his range of motion and strengthen his ankles as a result of Marfan syndrome. The casts will stay on for one week and then be removed. After they are removed, it will be determined if the casting improved his ankles or not. If there was improvement, then the doctor will assess how long it will be before he gets casted for another week.
Todd took Michael to get the casts on Friday. He did a great job while they were putting them on and was extremely cooperative during the casting. One of Michael's favorite parts of the casting was getting to pick out the colors for his casts. He chose red & green on one leg and red & black on the other leg. It looks pretty neat.
Michael has been very good with the casts and hasn't complained about them at all. He is getting around pretty good too and has the walking shoes so he isn't that limited in what he can do. Todd and I are really impressed and proud with how he is handling the casting. The hardest part about the casts is that you cannot get them wet. It makes bathing a bit challenging and there won't be any pool time this week.
Todd will take Michael to get the casts off this Friday. We have a busy weekend planned with Todd's work picnic and 2 birthday parties so that will be his reward for being so cooperative.
Here is a picture of Michael wearing the casts:
Todd took Michael to get the casts on Friday. He did a great job while they were putting them on and was extremely cooperative during the casting. One of Michael's favorite parts of the casting was getting to pick out the colors for his casts. He chose red & green on one leg and red & black on the other leg. It looks pretty neat.
Michael has been very good with the casts and hasn't complained about them at all. He is getting around pretty good too and has the walking shoes so he isn't that limited in what he can do. Todd and I are really impressed and proud with how he is handling the casting. The hardest part about the casts is that you cannot get them wet. It makes bathing a bit challenging and there won't be any pool time this week.
Todd will take Michael to get the casts off this Friday. We have a busy weekend planned with Todd's work picnic and 2 birthday parties so that will be his reward for being so cooperative.
Here is a picture of Michael wearing the casts:
Monday, September 6, 2010
A Second Opinion
Last weekend, we headed up to Johns Hopkins for doctor appointments for Michael and Todd. The first appointment was to see the orthopedic doctor for Michael on Monday at 1:00. When we got there, the doctor was in emergency surgery and we were going to have to wait. They said that the wait could be up to 2 hours long. We sat down, prepared for a long wait but it ended up being less than an hour.
Once we went back to see the doctor, he looked at Michael's x-rays that we had brought from his orthopedic doctor here. He said that he saw a slight bit of scoliosis. He looked at Michael's legs and saw how his feet are toward the ground. After evaluating Michael, he told us that he didn't foresee any major problems and that we were doing everything we should be doing at this point. He recommended that Michael continue physical therapy and to continue to wear his shoe inserts. He let us know that the inserts would not correct the problem with his feet but would give him support where it is needed.
He also looked at Katie briefly and said that he would recommend her seeing an orthopedic doctor for a check in about a year. So we basically got confirmation that we are doing all we can for Michael right now, which is what we were hoping for. Sometimes it's just comforting to get a second opinion.
Once we went back to see the doctor, he looked at Michael's x-rays that we had brought from his orthopedic doctor here. He said that he saw a slight bit of scoliosis. He looked at Michael's legs and saw how his feet are toward the ground. After evaluating Michael, he told us that he didn't foresee any major problems and that we were doing everything we should be doing at this point. He recommended that Michael continue physical therapy and to continue to wear his shoe inserts. He let us know that the inserts would not correct the problem with his feet but would give him support where it is needed.
He also looked at Katie briefly and said that he would recommend her seeing an orthopedic doctor for a check in about a year. So we basically got confirmation that we are doing all we can for Michael right now, which is what we were hoping for. Sometimes it's just comforting to get a second opinion.
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