Maggie wants a post about her. So I will write one. It can be hard to have two siblings with so many health issues. She is a very good sport about the whole thing. She is also an excellent big sister. She watches to make sure they do not get anything they are not supposed to and will make sure people know what they can and cannot give her siblings.
Maggie has loved kindergarten. Her teachers are wonderful with tons of experience. We couldn't ask for better teachers for Maggie. She has many friends and stays very, very busy. She is full of ideas and energy that never seems to end. She continues to take dance and tells us she loves it. She and I will be attending the nutcracker together in December. She cannot wait. Next year she will be old enough to try out for a part. I am not sure I am ready. :) She also loves that her sister takes dance at the same studio. They often perform dances for us on what they have been learning. It is very cute!
This past week, Maggie had a program at school for grandparents and special friends. It was very cute. The theme was Happy Birthday as her school is celebrating its 40th birthday (40th year in existence). My mother was able to come and sat front and center, much to Maggie's delight. It was an adorable program, and I am so thankful we have found such a wonderful school for Maggie!
Saturday, November 5, 2011
More Questions
Claire had a visit with the gastroenterologist in Mid-October. It was my hope that she would be discharged from the clinic especially since she no longer had a feeding tube. Unfortunately, that was not the case. He is concerned that Claire has a "pouch" in her stomach. That along with some other complaints has the doctor concerned. He did not offer much except to test Claire for celiac disease (for which I assume she is negative since I heard nothing). After talking with her pediatrician, we are going to wait and see what happens after Claire is off her reflux medication and taking "regular" consistency liquids. Hopefully the removal of those things will take care of the situation. It is something we will monitor. If we do continue to be concerned then we may consider taking Claire to Dallas/Houston to have her examined by a gastroenterologist there. For now it is a monitor and wait and see situation.
Also, Claire continues to snore and may have brief periods where she stops breathing (called apnea). Secondary to this, the pediatrician has ordered a sleep study. We will see where that leads us. This may be tied to her frequent infections and the fact she cannot seem to get rid of a cold and instead it becomes a sinus infection. We shall see....another adventure for us. With the holidays I have no idea when the test will take place. I will try to do a better job of keeping everyone updated. I apologize that I have not been better. Working, the three kids, their activities and my volunteering seem to "eat up" time.
Also, Claire continues to snore and may have brief periods where she stops breathing (called apnea). Secondary to this, the pediatrician has ordered a sleep study. We will see where that leads us. This may be tied to her frequent infections and the fact she cannot seem to get rid of a cold and instead it becomes a sinus infection. We shall see....another adventure for us. With the holidays I have no idea when the test will take place. I will try to do a better job of keeping everyone updated. I apologize that I have not been better. Working, the three kids, their activities and my volunteering seem to "eat up" time.
Claire's Therapy Update
Claire "graduated" out of physical therapy in August. The recommendation is that she be evaluated again in December/January and make sure she has not regressed. I am not sure that she has as she seems to get around pretty well. She is much slower than most but that may always be the case. Her class at school is made primarily children that were two in the spring so she is able to keep up with them quite well (seeing as she is three). That class has been nice as it is a bit smaller and she gets alot of one on one attention, which she loves.
Claire continues with an hour of occupational therapy each week. The emphasis has shifted to fine motor skills, such as dressing, scissors, use of a crayon, etc. She still has marked weakness throughout her body. Medically this is called hypotonia, or weak muscles. It may be over time they grow stronger but no one really knows as there dodes not seem to be a "reason" for it. Ms. Paula, her therapist, who she adores says she is getting stronger. Still a ways to go. It is possible she will have enough skills come March to "graduate" from OT. I am not sure what she will think of this as she and Ms. Paula are very tight. :)
Speech continues to be an area of "weakness" for Claire. Her evaluation in August placed her at about 24 months so about a year behind. She remains very week in her lower jaw which effects speech and feeding. She is making strides and the speech/feeding therapist we have now is wonderful! She is very knowledgeable, especially for a new graduate. She did training and Children's Medical Center at Dallas so she has experience with more complex kids like Claire. It is likely Claire will remain in speech for the forseeable future. Each year she is to gain more sounds/articulation so it is difficult to catch up once behind, at least at this young age. Maybe she will grow out of feeding therapy but we have a ways to go. She is having difficulty mastering drinking out of an open cup. Always something.
Hopefully I will get a chance to update about the newest tests and discussions with the doctors as well as info about Ryan and Maggie. Our house stays pretty busy!!
Thanks for taking the time to keep up with us!
Claire continues with an hour of occupational therapy each week. The emphasis has shifted to fine motor skills, such as dressing, scissors, use of a crayon, etc. She still has marked weakness throughout her body. Medically this is called hypotonia, or weak muscles. It may be over time they grow stronger but no one really knows as there dodes not seem to be a "reason" for it. Ms. Paula, her therapist, who she adores says she is getting stronger. Still a ways to go. It is possible she will have enough skills come March to "graduate" from OT. I am not sure what she will think of this as she and Ms. Paula are very tight. :)
Speech continues to be an area of "weakness" for Claire. Her evaluation in August placed her at about 24 months so about a year behind. She remains very week in her lower jaw which effects speech and feeding. She is making strides and the speech/feeding therapist we have now is wonderful! She is very knowledgeable, especially for a new graduate. She did training and Children's Medical Center at Dallas so she has experience with more complex kids like Claire. It is likely Claire will remain in speech for the forseeable future. Each year she is to gain more sounds/articulation so it is difficult to catch up once behind, at least at this young age. Maybe she will grow out of feeding therapy but we have a ways to go. She is having difficulty mastering drinking out of an open cup. Always something.
Hopefully I will get a chance to update about the newest tests and discussions with the doctors as well as info about Ryan and Maggie. Our house stays pretty busy!!
Thanks for taking the time to keep up with us!
Claire declared "normal"
Don't let the title fool you. I don't think anyone related to me could ever be truly normal; however, in late August the swallowing specialist declared that he considered Claire a normal kid now. That was after she "passed" her swallow study with flying colors. Nothing went to her lungs. So we are now trying to slowly make her liquids thinner and thinner with the hope she will be on normal consistency liquids by the end of this calendar year.
The reason for the "slow" move to normal consistency liquids is her muscles are not used to swallowing and need to be "trained". So far we have not had any choking or issues. We are very excited.
She has had her first cold which became a sinus infection. Her pediatrician does not feel it is related to liquids, just the way she is. So "sick season" begins for her. She still has her tubes so maybe we can avoid ear infections....now it is coughing to keep her and mommy up all night. :)
The reason for the "slow" move to normal consistency liquids is her muscles are not used to swallowing and need to be "trained". So far we have not had any choking or issues. We are very excited.
She has had her first cold which became a sinus infection. Her pediatrician does not feel it is related to liquids, just the way she is. So "sick season" begins for her. She still has her tubes so maybe we can avoid ear infections....now it is coughing to keep her and mommy up all night. :)
Wednesday, August 17, 2011
Results and Updates
Claire has had a number of tests and evaluations in the last few weeks. So far we have received all good news. It is hard to believe sometimes how far Claire has come in the last year. People often tell me how amazed they are with how much she has grown and changed. We are very, very thankful for the warm, loving and all around amazing little girl we were blessed with.
Claire had her nerve conduction test today and did absolutely amazing. The doctor told us Claire handled the test better than any three year old (well in less than two weeks) she has ever seen. Claire did not cry at all during the shocks and only on the fifth, sixth and seventh needle sticks and stopped very soon afterwards. It was an amazing sight to see. She was even singing the Itsy Bitsy Spider at one point during the test. She is no worse for the test, having no regression or no residual issues at all. The test was completely normal, and this doctor sees no reason to continue with any type of testing. In her opinion, Claire may always be slower than others, but she is cognitively intact (she can receive language and process it) and continues to progress developmentally and is starting to catch up. This is wonderful news for us as we agree and feel no need to further search for a diagnosis/reason that may not exist. Just chance or luck. :)
Claire also had a swallow study last week. For the first time in over 2.5 years, Claire's swallow study was normal. Nothing went to her lungs or even attempted to go to her lungs. We have not yet seen the ENT; however, the goal is to progress to nectar thick feeds and from there to regular liquids. This may be a long process, but hopefully she will be able to train her muscles to swallow the thinner liquids and avoid sickness so we can continue to move forward with drinking regular liquids. She is certainly ready to "drink like Maggie".
Her feeding and speech skills are still behind. She continues to work on feeding in both speech and occupational therapy. She has had a bit of down time over the summer where she didn't go as often, and they didn't necessarily push her as hard but with the school year starting they plan to "get it going again". Her speech level is reportedly about on a 2 year olds level so about one year behind. She has about 40 sounds she cannot articulate (20-25 would be a qualifying number for reference). So we will continue with twice weekly speech and feeding therapy.
On a positive note as well, Claire has progressed far enough in physical therapy to no longer qualify for further treatment at this time. The hope is that Claire will continue to improve and not need further therapy. However, as kids often regress, she is going to be reevaluated in 3-6 months to see where she is and if the situation has changed. We will continue to monitor her closely ourselves.
As Arkansas has a cutoff date of August 1st for school, Claire is in a 2 year old class this year. This is actually good for her based on her physical abilities/motor skills. Her teachers are wonderful and we are very, very happy with her "new" school. Both she and Ryan attend the preschool at our current church.
As we approach Claire's third birthday, it is hard to believe all the child has undergone and overcome in her short life. She is a joy to be around and continues to delight us with her abilities. I am thankful each day we were blessed with our precious little "Claire Bear"
Thanks to everyone for the thoughts and support!!! I will plan to update again after we see her ENT physician in a few weeks time.
Claire had her nerve conduction test today and did absolutely amazing. The doctor told us Claire handled the test better than any three year old (well in less than two weeks) she has ever seen. Claire did not cry at all during the shocks and only on the fifth, sixth and seventh needle sticks and stopped very soon afterwards. It was an amazing sight to see. She was even singing the Itsy Bitsy Spider at one point during the test. She is no worse for the test, having no regression or no residual issues at all. The test was completely normal, and this doctor sees no reason to continue with any type of testing. In her opinion, Claire may always be slower than others, but she is cognitively intact (she can receive language and process it) and continues to progress developmentally and is starting to catch up. This is wonderful news for us as we agree and feel no need to further search for a diagnosis/reason that may not exist. Just chance or luck. :)
Claire also had a swallow study last week. For the first time in over 2.5 years, Claire's swallow study was normal. Nothing went to her lungs or even attempted to go to her lungs. We have not yet seen the ENT; however, the goal is to progress to nectar thick feeds and from there to regular liquids. This may be a long process, but hopefully she will be able to train her muscles to swallow the thinner liquids and avoid sickness so we can continue to move forward with drinking regular liquids. She is certainly ready to "drink like Maggie".
Her feeding and speech skills are still behind. She continues to work on feeding in both speech and occupational therapy. She has had a bit of down time over the summer where she didn't go as often, and they didn't necessarily push her as hard but with the school year starting they plan to "get it going again". Her speech level is reportedly about on a 2 year olds level so about one year behind. She has about 40 sounds she cannot articulate (20-25 would be a qualifying number for reference). So we will continue with twice weekly speech and feeding therapy.
On a positive note as well, Claire has progressed far enough in physical therapy to no longer qualify for further treatment at this time. The hope is that Claire will continue to improve and not need further therapy. However, as kids often regress, she is going to be reevaluated in 3-6 months to see where she is and if the situation has changed. We will continue to monitor her closely ourselves.
As Arkansas has a cutoff date of August 1st for school, Claire is in a 2 year old class this year. This is actually good for her based on her physical abilities/motor skills. Her teachers are wonderful and we are very, very happy with her "new" school. Both she and Ryan attend the preschool at our current church.
As we approach Claire's third birthday, it is hard to believe all the child has undergone and overcome in her short life. She is a joy to be around and continues to delight us with her abilities. I am thankful each day we were blessed with our precious little "Claire Bear"
Thanks to everyone for the thoughts and support!!! I will plan to update again after we see her ENT physician in a few weeks time.
Thursday, June 23, 2011
Test Results and Beyond
At the neurologist visit in early June, a number of blood tests were run. Some of the results are back (we are still waiting for results on some of the genetic tests). One test result was high. It was not as high as it would be if she had a degenerative muscle disease (think muscular dystrophy or ALS). That would be 10X or more from the normal value. So, the neurologist felt we should run the blood test again, to ensure that the level was indeed high. The second blood level came back today.
Unfortunately, it was the same level as before. This means there is a possibility that Claire has a congenital muscle disease and/or a muscle abnormality. This is not certain as it could be "nothing". Claire has obvious weakness and a developmental delay. However, she is progressing, not regressing so it is difficult to ascertain what the "best" course of action is in her case. After speaking with the neurologist at length, further tests are indicated. These will be for diagnostic purposes as of now. She does not plan to change treatment options (continuing extensive therapies) unless the tests find something very specific with a set treatment. She is honest that she really doesn't know what to expect. The only thing she is sure of is that Claire does not have a degenerative muscle disease and that she is currently progressing, not regressing, which is a good sign.
The other tests that will be run are not "easy" tests. The first will be her MRI next Friday, the 1st. She has to be put to sleep for that and cannot eat all day (until the test at 3pm). I am not looking forward to that at all.....The neurologist is not nearly as certain she will not find anything as she was prior to these test results.
Claire will also undergo a nerve conduction/EMG test on each of her extremities. I will not give the details here as some may not wish to know, but you can get the description on google should you so desire. I have had this test done on me twice, one very recently and it is quite uncomfortable and painful. The neurologist even warned us this will not be an "easy" test. It is a very hard decision to make, but we feel we need to make sure this isn't something we can treat or something serious we need to know now as opposed to later. We also hope she will have less memories of the "trauma" from the test if we do it now as opposed to later in life.
The neurologist also mentioned a muscle biopsy. It is my understanding this will happen if nothing is found on the MRI and nerve conduction/EMG test. It may happen if something is found; just depends on the results, I think. All in all, Claire is doing well. The doctors are very impressed with her cognitive skills as well as her receptive language. These tests are needed to ensure we know the proper way to treat Claire, and if she will continue to improve in regards to her swallowing or if this potential problem, means something different in that aspect. The muscle biopsy would be done by a surgeon, etc. We will cross that bridge if and when the time comes. :)
The nerve conduction/EMG should be in the next few weeks (say 2-3). Only one doctor reads them so it can be difficult to get an appointment. July 4th holiday is in there as well. :)
I will keep you updated as we learn more information.
Unfortunately, it was the same level as before. This means there is a possibility that Claire has a congenital muscle disease and/or a muscle abnormality. This is not certain as it could be "nothing". Claire has obvious weakness and a developmental delay. However, she is progressing, not regressing so it is difficult to ascertain what the "best" course of action is in her case. After speaking with the neurologist at length, further tests are indicated. These will be for diagnostic purposes as of now. She does not plan to change treatment options (continuing extensive therapies) unless the tests find something very specific with a set treatment. She is honest that she really doesn't know what to expect. The only thing she is sure of is that Claire does not have a degenerative muscle disease and that she is currently progressing, not regressing, which is a good sign.
The other tests that will be run are not "easy" tests. The first will be her MRI next Friday, the 1st. She has to be put to sleep for that and cannot eat all day (until the test at 3pm). I am not looking forward to that at all.....The neurologist is not nearly as certain she will not find anything as she was prior to these test results.
Claire will also undergo a nerve conduction/EMG test on each of her extremities. I will not give the details here as some may not wish to know, but you can get the description on google should you so desire. I have had this test done on me twice, one very recently and it is quite uncomfortable and painful. The neurologist even warned us this will not be an "easy" test. It is a very hard decision to make, but we feel we need to make sure this isn't something we can treat or something serious we need to know now as opposed to later. We also hope she will have less memories of the "trauma" from the test if we do it now as opposed to later in life.
The neurologist also mentioned a muscle biopsy. It is my understanding this will happen if nothing is found on the MRI and nerve conduction/EMG test. It may happen if something is found; just depends on the results, I think. All in all, Claire is doing well. The doctors are very impressed with her cognitive skills as well as her receptive language. These tests are needed to ensure we know the proper way to treat Claire, and if she will continue to improve in regards to her swallowing or if this potential problem, means something different in that aspect. The muscle biopsy would be done by a surgeon, etc. We will cross that bridge if and when the time comes. :)
The nerve conduction/EMG should be in the next few weeks (say 2-3). Only one doctor reads them so it can be difficult to get an appointment. July 4th holiday is in there as well. :)
I will keep you updated as we learn more information.
Saturday, June 11, 2011
Visit to the Neurologist
Well, Claire went to the neurologist on Tuesday. Another doctor in another speciality trying to weigh in on Claire's situation. As my pediatrician put it, "everyone wants to be the one to figure out Claire". If only it were that simple. As Dr. Richter her ENT put it, she is a complex case. Not only is her "primary" condition extremely unusual, she has another of other symptoms that cannot be explained by her swallowing dysfunction. So other doctors get the chance to weigh in. See if they will be the one to find the elusive diagnosis that will explain it all.
As most of you know, Claire has generalized hypotonia, which means the muscles of her entire body are weak. She also had a significant delay of speech. Another "concern" is that her cheeks are abnormally red/rosy (although her pediatrician is not concerned about that at this time). So those symptoms combined with her swallowing dysfunction resulted in a recommendation by the allergist and ENT to see a neurologist.
So, we went. She noted that Claire's left side is markedly weaker than her right (more than seen with just a preference for the right in a right-handed person). Her upper body is very much weaker than the lower half. This could be that her physical therapy has made a larger difference in the lower or that her upper body is more effected by whatever has caused her to be weak. Her speech is still delayed. She was been slow to reach developmental milestones. However, the neurologist does not feel she has a "syndrome" to explain all of this. She is just slower. As long as she is not regressing, the neurologist does not feel there is a reason to "worry". She also agrees Claire is cognitively intact, and her receptive language skills are very sharp.
So the neurologist decided to run a large number of blood tests to rule out a bunch of stuff (that I cannot remember). This is never fun as Claire is a "hard stick". The nurses spend "forever" to try to find a vein they can use. Unfortunately, we were there after the lab hours, which is not good as the people from the lab are the only ones who can draw Claire with any good results. So, the nurse finally tried and got nothing (after digging, which I HATE). So they called the lab who came and got it on the first try, but they didn't have ahold of her other arm well so she reached over and pulled out the needle. The nurses and the lab technicians were amazed with how well Claire handled the whole situation. I said, "This is what happens when you are in the medical system from 5 weeks of age on." The neurologist does not expect these to come back positive, but one never knows. It will take a couple of weeks to get the results so I will post when we know something.
The neurologist also wants an MRI of Claire's brain. This will require Claire to go under anesthesia. Yeah (sarcastically)! I think we are up to 9 or ten times now. :P Unfortunately, the scheduling office was closed when we got finished with the appointment so we don't know when it will be yet. The nurse did the pre-screening and was asking about anethesia, etc and when she heard how much we have been under she laughed and said "you could give this info.". I will let everyone know when we know more about when. Again, the doctor does not think we will find anything but did caution it is possible that there is something in the right side of her brain, which would effect the left side of her body. One can have a motor deficit without any intellectual (cognitive) deficit.
So we wait...for answers...that probably will not appear. We are just thankful Claire continues to improve. We will return for a swallow study and an ENT appointment in August. Then more decisions will be made.
Thanks for continuing on our journey with us! We couldn't do it without all of you!!
As most of you know, Claire has generalized hypotonia, which means the muscles of her entire body are weak. She also had a significant delay of speech. Another "concern" is that her cheeks are abnormally red/rosy (although her pediatrician is not concerned about that at this time). So those symptoms combined with her swallowing dysfunction resulted in a recommendation by the allergist and ENT to see a neurologist.
So, we went. She noted that Claire's left side is markedly weaker than her right (more than seen with just a preference for the right in a right-handed person). Her upper body is very much weaker than the lower half. This could be that her physical therapy has made a larger difference in the lower or that her upper body is more effected by whatever has caused her to be weak. Her speech is still delayed. She was been slow to reach developmental milestones. However, the neurologist does not feel she has a "syndrome" to explain all of this. She is just slower. As long as she is not regressing, the neurologist does not feel there is a reason to "worry". She also agrees Claire is cognitively intact, and her receptive language skills are very sharp.
So the neurologist decided to run a large number of blood tests to rule out a bunch of stuff (that I cannot remember). This is never fun as Claire is a "hard stick". The nurses spend "forever" to try to find a vein they can use. Unfortunately, we were there after the lab hours, which is not good as the people from the lab are the only ones who can draw Claire with any good results. So, the nurse finally tried and got nothing (after digging, which I HATE). So they called the lab who came and got it on the first try, but they didn't have ahold of her other arm well so she reached over and pulled out the needle. The nurses and the lab technicians were amazed with how well Claire handled the whole situation. I said, "This is what happens when you are in the medical system from 5 weeks of age on." The neurologist does not expect these to come back positive, but one never knows. It will take a couple of weeks to get the results so I will post when we know something.
The neurologist also wants an MRI of Claire's brain. This will require Claire to go under anesthesia. Yeah (sarcastically)! I think we are up to 9 or ten times now. :P Unfortunately, the scheduling office was closed when we got finished with the appointment so we don't know when it will be yet. The nurse did the pre-screening and was asking about anethesia, etc and when she heard how much we have been under she laughed and said "you could give this info.". I will let everyone know when we know more about when. Again, the doctor does not think we will find anything but did caution it is possible that there is something in the right side of her brain, which would effect the left side of her body. One can have a motor deficit without any intellectual (cognitive) deficit.
So we wait...for answers...that probably will not appear. We are just thankful Claire continues to improve. We will return for a swallow study and an ENT appointment in August. Then more decisions will be made.
Thanks for continuing on our journey with us! We couldn't do it without all of you!!
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