It's Friday.....
I just wanted to post a quick update on Cooper. We went on February 22nd for Coopers muscle biopsy. Everything went well, the procedure was quick and he has recovered quickly. The doctors estimate a month before we receive any results. Kirby and I are patient about this, because in the past things have been done in a hurry and we have been through many mis-diagnosis that we want them to be thourough and give us a soild answer.
If this test does come back normal, they have 5-6 more test they would like to run, one of them being a more extensive EMG since the previous one he had at Memorial Hermann was only for the lower half of his right leg. If all of these test come back normal, they will recommend us to Johns Hopkins in Baltimore. So right now we are taking everything step by step, day by day.
Also, in January they recommended us to start back with physical therapy. I have been pessimistic about physical therapy because they have told me in the past that Cooper needs to build his inner thigh muscles. I worry that he is incapable of building these muscles and become discouraged if we continued to push him to do something he can not do.
With that being said, I have been getting antsy about waiting on these test results and called about starting Cooper back in PT this last week. They poriginally told me that they would not have an opening for us until May. However, on Tuesday they called me at 8:30am and asked is we could make a 10am appointment. Luckily they are located on FM 1960and my boss was being understanding that day ;) So we loaded up and headed that way. The PT took her time evaluating Cooper and discussing the past medical history and she had read some of the paperwork. (there is a lot to read, so I feel luck when doctors read any of it!) Whe she began discussing the treatment plan and the next steps I begin expressing my apprehensions. The PT then told me that she agrees with me and that Cooper has something preventing him from building his muscles. In watching him interact and play, Cooper was trying to do as much as he physically could. She said his activites alone should be helping to build his muscle, and that if he was able to function normally at one time he should be able to walk, run, jump, like a typical 3 1/2 year old should. Also, she feels that Cooper is weak overall, in his legs, upper body and core. This was such a relief to hear the PT agreeing with what Kirby and I are seeing as parents.
So she will be writing a report to our doctors, recommend the types of physical therapy she would like to do and we will wait to hear when we will be scheduled for regualr therapy.
So that is where we are today.
Again, I'd like to thank everyone who has been following our blog and Coopers journey.
Love,
The Cannon Family
Friday, March 11, 2011
Friday, February 18, 2011
Friday 2/18/2011
Good Evening,
I am going to try and keep this post brief, but I just wanted to update everyone on what is going on with Cooper. A few weeks ago, we met with the pediatri surgeon and he agreed that Cooper is a candidate for the muscle biopsy. So this Tuesday, February 22nd, we will be going to Texas Children's for day suregry and they are going to remove a piece of muscle from his leg about the size of his pinky.
I have to admit, this is the first procedure that is really wearing on my mind and heart. Cooper is so tiny, and his legs are so little, a piece of muscle the size of his pinky is really a large piece to take out.
Out of all the blood test we have been running lately, they have all come back normal, and his white blood cell count and sed rate are back in normal ranges. These are good things, but Cooper still has not been improving with his walk or stability.
After we spoke with the pediatric surgeon, we were asked to swing by the neurologist office, and she pulled in the neurologist who specializes in muscle disorders. He examined Cooper and agreed the next logical step would be this biopsy. Of course I asked if there were conditions in which the disorder does not show up in blood test. He would not meantion the names of any to us, which is probably for the best, because Kirby and I would be googling and worring......
So we will call on Monday to find out the time of surgery for Tuesday. The results can take up to a month to come back, but we've been waiting for over a year already, so what's a month.....
I will keep everyone updated when we find anything out.
Love Always,
The Cannon Family
I am going to try and keep this post brief, but I just wanted to update everyone on what is going on with Cooper. A few weeks ago, we met with the pediatri surgeon and he agreed that Cooper is a candidate for the muscle biopsy. So this Tuesday, February 22nd, we will be going to Texas Children's for day suregry and they are going to remove a piece of muscle from his leg about the size of his pinky.
I have to admit, this is the first procedure that is really wearing on my mind and heart. Cooper is so tiny, and his legs are so little, a piece of muscle the size of his pinky is really a large piece to take out.
Out of all the blood test we have been running lately, they have all come back normal, and his white blood cell count and sed rate are back in normal ranges. These are good things, but Cooper still has not been improving with his walk or stability.
After we spoke with the pediatric surgeon, we were asked to swing by the neurologist office, and she pulled in the neurologist who specializes in muscle disorders. He examined Cooper and agreed the next logical step would be this biopsy. Of course I asked if there were conditions in which the disorder does not show up in blood test. He would not meantion the names of any to us, which is probably for the best, because Kirby and I would be googling and worring......
So we will call on Monday to find out the time of surgery for Tuesday. The results can take up to a month to come back, but we've been waiting for over a year already, so what's a month.....
I will keep everyone updated when we find anything out.
Love Always,
The Cannon Family
Tuesday, January 25, 2011
Nuerology 1/25/2011
Hello Again,
I know it has been awhile since my last post, but to be honest there has not been too much to tell until today. We had several test run during December and the good news is that they all came back normal. This includes the biopsy of his spine.
We have not seen any improvement in his walking or energy. We did have an appointment with PMN&R at Texas Childrens'. Which is just a fancy name for a doctor of physical thereapy. Of course physical therapy was recommended again along with speech thereapy. So with periodic phone calls with our neurologist we discussed treating him with physical thereapy and possibly trying Cooper on a trial period of a medicine for dystonia.
Today we saw a different neurologist at Texas Childrens that specializes in movement disorders. She asked Cooper to walk and immediatly noted that he was having severe muscle weakness. This is something we have already noticed, however, she noticed that his muscle weakness was in his upper body as well as his lower body. So we are now leaning towards a muscle disorder. There is ANOTHER neurologist that specializes in neurological muscsle disorders. We will be seeing him as well. The doctors are now starting to see his muscles degenerating.
They wanted us to test him when he was having one of his "can't walk" moments for his potassium levels. And considered having his admitted for this and other testing. While we were there he had was unable to stand on his own, so they went ahead and drew blood right there in the doctors office.
We will be heading back to Texas Childrens on Thursday to test his heart. Since the heart is a muscle they are worried he might start developing heart problems as well. Then we will be having a muscle biopsy done in the beginning of February.
Basically we are now leaning towards a muscle disorder, but when we asked them to give us an idea of what they were thinking, they told us they would rather not alarm us. So we are back to the testing and waiting phase.
Please continue to pray for Cooper. Thank you to everyone who has been following are journey. Your enecouragement means so much!
Love Always,
The Cannon Family
I know it has been awhile since my last post, but to be honest there has not been too much to tell until today. We had several test run during December and the good news is that they all came back normal. This includes the biopsy of his spine.
We have not seen any improvement in his walking or energy. We did have an appointment with PMN&R at Texas Childrens'. Which is just a fancy name for a doctor of physical thereapy. Of course physical therapy was recommended again along with speech thereapy. So with periodic phone calls with our neurologist we discussed treating him with physical thereapy and possibly trying Cooper on a trial period of a medicine for dystonia.
Today we saw a different neurologist at Texas Childrens that specializes in movement disorders. She asked Cooper to walk and immediatly noted that he was having severe muscle weakness. This is something we have already noticed, however, she noticed that his muscle weakness was in his upper body as well as his lower body. So we are now leaning towards a muscle disorder. There is ANOTHER neurologist that specializes in neurological muscsle disorders. We will be seeing him as well. The doctors are now starting to see his muscles degenerating.
They wanted us to test him when he was having one of his "can't walk" moments for his potassium levels. And considered having his admitted for this and other testing. While we were there he had was unable to stand on his own, so they went ahead and drew blood right there in the doctors office.
We will be heading back to Texas Childrens on Thursday to test his heart. Since the heart is a muscle they are worried he might start developing heart problems as well. Then we will be having a muscle biopsy done in the beginning of February.
Basically we are now leaning towards a muscle disorder, but when we asked them to give us an idea of what they were thinking, they told us they would rather not alarm us. So we are back to the testing and waiting phase.
Please continue to pray for Cooper. Thank you to everyone who has been following are journey. Your enecouragement means so much!
Love Always,
The Cannon Family
Thursday, December 16, 2010
12/14/2010 CT Scan with Biopsy
Hello Again,
I know that I said I was going to post about Cooper's CT Scan yesterday, but time slipped away from me.
We went on Tuesday for the CT Scan with the biopsy. They asked us to be there at 6:30am to prepare for the 8 am scheduled time. As we were waiting they then informed us that they had a brna dnew Ct machine and given Cooper's mysterious problems they would like for him to be the first to use it. However, it would not be ready until noon...........Well after assuring me they would be able to perform the procedure accuartly on a new machine and there was no chance of needing a re do, I agreed to use the new ct scanner. so to kill time, me and daddy loaded Cooper up and took him to the Houston Museum of Natural Science to look at dinosaurs.
We came back and they sedated Cooper for his scan and biopsy. With the biopsy they cut a small hole in his back, inserted a needle, guided by the ct scanner, and drew samples of bone out of his s1 vertebrea on his back. They also drew a few extra samples for the hemotologists research study. They said the results should be back in a bout 72 hours. So now we wait.
Today we had a check up with the rheumatologist as well as saw the audiology department to check his ears. Again the rheumatologist see no active signs of arthritis and he has been off of the medicine since October.
The hearing test went really well. Cooper cooperated with teverything and they said that his hearing is great.
I apologize if this blog is not very detailed. I am fighting a cold myself these days and am trying my best to recover from it.
Love Always,
The Cannon's
I know that I said I was going to post about Cooper's CT Scan yesterday, but time slipped away from me.
We went on Tuesday for the CT Scan with the biopsy. They asked us to be there at 6:30am to prepare for the 8 am scheduled time. As we were waiting they then informed us that they had a brna dnew Ct machine and given Cooper's mysterious problems they would like for him to be the first to use it. However, it would not be ready until noon...........Well after assuring me they would be able to perform the procedure accuartly on a new machine and there was no chance of needing a re do, I agreed to use the new ct scanner. so to kill time, me and daddy loaded Cooper up and took him to the Houston Museum of Natural Science to look at dinosaurs.
We came back and they sedated Cooper for his scan and biopsy. With the biopsy they cut a small hole in his back, inserted a needle, guided by the ct scanner, and drew samples of bone out of his s1 vertebrea on his back. They also drew a few extra samples for the hemotologists research study. They said the results should be back in a bout 72 hours. So now we wait.
Today we had a check up with the rheumatologist as well as saw the audiology department to check his ears. Again the rheumatologist see no active signs of arthritis and he has been off of the medicine since October.
The hearing test went really well. Cooper cooperated with teverything and they said that his hearing is great.
I apologize if this blog is not very detailed. I am fighting a cold myself these days and am trying my best to recover from it.
Love Always,
The Cannon's
Friday, December 10, 2010
12/10/2010 - Speech Therapy and the Hemotologist
Merry Christmas,
We have finally made it to Friday and what a week it has been!!!
Yesterday we went to the speech therapist and to make a long story short, Cooper is about a year behind in his speeh and lanuage and they are recommending us to speech therapy. I will follow up on this, but would like to wait and see the overall diagnosis on him before commiting to a speech therapy program.
Last night my heart was broken into a million pieces. As we were winding down from the day, the boys had eaten their dinner and were watching cartoons and playing through out the house. Clyde was especially wound up and was just running all over the house. He was running around the coffee table, into the playroom, back through the living room and into the kitchen. He was doing this for about 20 minutes and showing no signs of slowing down. Cooper saw what fun his bubba was having, so he dicided to get up and runn around with him. As he was trying to chase after Clyde he realized he could not keep up and sat on the floor in the middle of the living room. He then looked at me and said "Ma, I can't run." This was the first time he has acknowledged that he can't run. Before he was always trying to run and tells me how fast he is. He has now realized he can not keep up with his brother. But don't you worry, because Momma scooped him up and started running around chasing Clyde and jumping over things, and Cooper was just laughing his head off. I don't care if he's 25, I will still figure out a way to run with him!!
Today was the appointment with the hemotologist. He siad that the bone scan came back negative, which means they did not find anything. This is good news. He asked me several questions about Cooper's developement. He asked me about skin problems and if Cooper has cradel cap. I said yes, and he asked me how long, and I know that he had cradel cap up to 9 months, if not longer. Come to find out this is an indicator for Langerhans Cell Histocytosis (LCH).
(Copied from childrenshospital.org)
Langerhans cell histiocytosis is a rare disorder that occurs when there are too many of a type of white blood cell called a Langerhans cell (named for a German scientist). These cells normally reside in the skin and help fight infections and destroy certain foreign substances in the body. In LCH, these cells accumulate on bones and other parts of the body, particularly the head and neck, causing a wide range of problems. LCH can also be found in the ribs, sternum, long bones of the arms and legs, vertebra of the spine, and the pelvis. Although LCH can occur in people of all ages, a majority of cases occur in children under 10 years old.
We do not know a diagnosis, but LCH is at the top of our list as possiblities at this point. We will have a CT scan with a biopsy on Tuesday, but they believe that they will probably have to obtain a larger sample and will ultimatly do surgery to get it.
So we are still in the waiting phase. The good but scary thing is that we seem to be getting very close to a diagnosis. Something that we can start treating.
We will keep you posted as we find more out.
Love Always,
Summer and Cooper
We have finally made it to Friday and what a week it has been!!!
Yesterday we went to the speech therapist and to make a long story short, Cooper is about a year behind in his speeh and lanuage and they are recommending us to speech therapy. I will follow up on this, but would like to wait and see the overall diagnosis on him before commiting to a speech therapy program.
Last night my heart was broken into a million pieces. As we were winding down from the day, the boys had eaten their dinner and were watching cartoons and playing through out the house. Clyde was especially wound up and was just running all over the house. He was running around the coffee table, into the playroom, back through the living room and into the kitchen. He was doing this for about 20 minutes and showing no signs of slowing down. Cooper saw what fun his bubba was having, so he dicided to get up and runn around with him. As he was trying to chase after Clyde he realized he could not keep up and sat on the floor in the middle of the living room. He then looked at me and said "Ma, I can't run." This was the first time he has acknowledged that he can't run. Before he was always trying to run and tells me how fast he is. He has now realized he can not keep up with his brother. But don't you worry, because Momma scooped him up and started running around chasing Clyde and jumping over things, and Cooper was just laughing his head off. I don't care if he's 25, I will still figure out a way to run with him!!
Today was the appointment with the hemotologist. He siad that the bone scan came back negative, which means they did not find anything. This is good news. He asked me several questions about Cooper's developement. He asked me about skin problems and if Cooper has cradel cap. I said yes, and he asked me how long, and I know that he had cradel cap up to 9 months, if not longer. Come to find out this is an indicator for Langerhans Cell Histocytosis (LCH).
(Copied from childrenshospital.org)
Langerhans cell histiocytosis is a rare disorder that occurs when there are too many of a type of white blood cell called a Langerhans cell (named for a German scientist). These cells normally reside in the skin and help fight infections and destroy certain foreign substances in the body. In LCH, these cells accumulate on bones and other parts of the body, particularly the head and neck, causing a wide range of problems. LCH can also be found in the ribs, sternum, long bones of the arms and legs, vertebra of the spine, and the pelvis. Although LCH can occur in people of all ages, a majority of cases occur in children under 10 years old.
We do not know a diagnosis, but LCH is at the top of our list as possiblities at this point. We will have a CT scan with a biopsy on Tuesday, but they believe that they will probably have to obtain a larger sample and will ultimatly do surgery to get it.
So we are still in the waiting phase. The good but scary thing is that we seem to be getting very close to a diagnosis. Something that we can start treating.
We will keep you posted as we find more out.
Love Always,
Summer and Cooper
Wednesday, December 8, 2010
12/7/2010 Bone Scan Day
Well Pearl Harbor day was a long day for us this year.
We were scheduled for a Bone Scan and CT Scan with biopsy on December 30th. They went ahead and moved the bone scan to the 7th. I tried to get them to do both but they could not get them both on the same day.
If anyone is not familiar with a bone, I am just copying and pasting an explanation I found on another website :
A bone scan is a nuclear scanning test that identifies new areas of bone growth or breakdown. It can be done to evaluate damage to the bones, find cancer that has spread (metastasized) to the bones, and monitor conditions that can affect the bones (including infection and trauma). A bone scan can often find a problem days to months earlier than a regular X-ray test.
For a bone scan, a radioactive tracer substance is injected into a vein in the arm. The tracer then travels through the bloodstream and into the bones. This process may take several hours. A special camera (gamma) takes pictures of the tracer in the bones. This helps show cell activity and function in the bones. Areas that absorb little or no amount of tracer appear as dark or "cold" spots, which may indicate a lack of blood supply to the bone (bone infarction) or the presence of certain types of cancer. Areas of rapid bone growth or repair absorb increased amounts of the tracer and show up as bright or "hot" spots in the pictures. Hot spots may indicate problems such as arthritis, the presence of a tumor, a fracture, or an infection.
A bone scan may be done on the entire body or just a part of it.
What we were lookign for specifically is any lesions that may be occuring on his bones that are associated woth Langerhans Cell Histcytosis. I would go into more detail as to what that is, however we still do not know what he has, and I do not want anyone to think we have a diagnosis. This is just a possiblity we are testing for.
So we first had to check in and head to the basement of Texas Children's. They did not do the first IV correctly, so they had to re-stick him, and he was screaming bloody murder. Poor Baby. We then had to wait for the radioactive injection to circulate through out his body, and we waited and waited and waited. Finally they called us in and sedated him for the test. The whole test took about an hour, as it was a full body test.
When the procedure was finally complete and he he was monitored in recovery they let us go home. This was at 4:50pm, so we then had the joy of rush hour traffic. We finally made it home after this long long day and I was nice enough to then close the car door on little Cooper's fingers. Luckily, ther ewas no severe damage, just some squished fingers.
Today he woke up in a great mood and crawled in bed with me. He is happy and active.
Our week is not over. The doctors believe Cooper is behind in his speech and laguage, so we go to speech therapy on Thursday to assess is abilities and determine if there is a physical problem as to why he may be behind. On Friday we will be seeing the hemotologist. I suspect we will hear the results of the bone scan any day, howver, if we do not, I know the hemotologist will be able to tell us whether they saw anything or not.
So that's where we are at today. Who knows where we will be tomorrow :)
XOXO,
Summer and Cooper
We were scheduled for a Bone Scan and CT Scan with biopsy on December 30th. They went ahead and moved the bone scan to the 7th. I tried to get them to do both but they could not get them both on the same day.
If anyone is not familiar with a bone, I am just copying and pasting an explanation I found on another website :
A bone scan is a nuclear scanning test that identifies new areas of bone growth or breakdown. It can be done to evaluate damage to the bones, find cancer that has spread (metastasized) to the bones, and monitor conditions that can affect the bones (including infection and trauma). A bone scan can often find a problem days to months earlier than a regular X-ray test.
For a bone scan, a radioactive tracer substance is injected into a vein in the arm. The tracer then travels through the bloodstream and into the bones. This process may take several hours. A special camera (gamma) takes pictures of the tracer in the bones. This helps show cell activity and function in the bones. Areas that absorb little or no amount of tracer appear as dark or "cold" spots, which may indicate a lack of blood supply to the bone (bone infarction) or the presence of certain types of cancer. Areas of rapid bone growth or repair absorb increased amounts of the tracer and show up as bright or "hot" spots in the pictures. Hot spots may indicate problems such as arthritis, the presence of a tumor, a fracture, or an infection.
A bone scan may be done on the entire body or just a part of it.
What we were lookign for specifically is any lesions that may be occuring on his bones that are associated woth Langerhans Cell Histcytosis. I would go into more detail as to what that is, however we still do not know what he has, and I do not want anyone to think we have a diagnosis. This is just a possiblity we are testing for.
So we first had to check in and head to the basement of Texas Children's. They did not do the first IV correctly, so they had to re-stick him, and he was screaming bloody murder. Poor Baby. We then had to wait for the radioactive injection to circulate through out his body, and we waited and waited and waited. Finally they called us in and sedated him for the test. The whole test took about an hour, as it was a full body test.
When the procedure was finally complete and he he was monitored in recovery they let us go home. This was at 4:50pm, so we then had the joy of rush hour traffic. We finally made it home after this long long day and I was nice enough to then close the car door on little Cooper's fingers. Luckily, ther ewas no severe damage, just some squished fingers.
Today he woke up in a great mood and crawled in bed with me. He is happy and active.
Our week is not over. The doctors believe Cooper is behind in his speech and laguage, so we go to speech therapy on Thursday to assess is abilities and determine if there is a physical problem as to why he may be behind. On Friday we will be seeing the hemotologist. I suspect we will hear the results of the bone scan any day, howver, if we do not, I know the hemotologist will be able to tell us whether they saw anything or not.
So that's where we are at today. Who knows where we will be tomorrow :)
XOXO,
Summer and Cooper
Friday, December 3, 2010
12/2/2010 The Neurosurgeon
Hello All,
We hope everyone is doing well. We are super busy with doctors appointments and testing these days, which is wonderful because we might actually get some answers.
On Thursday we went and saw the neurosurgeon. While in his office he pulled up the MRI images and showed us what they were looking at. They showed us his tail bone and how there was no connecting tissue, thus no tether spinal cord. Then they showed us how all his vertebra were one color, then his s1 vertebra was a completely different shade then all of the others. They believe this is possibly the problem.
They are scheduling us for a bone scan as well as a CT scan. Since Cooper will need to be sedated for these they are going to use the CT scan to take a biopsy of the vertebra. The neurosurgeon warned us that they may still need to do open surgery to get a larger portion of bone. But we will wait and see.
They would like all of these test to be complete be fore we go see the hematologist on Friday. The hematologist make look over all of the testing and have some sort of answers for us and we will not have to have the open surgery.
Hopefully this will all come to an end soon. Cooper has moments where he can not walk or stand for 15-20 minutes and it is so hard to hear him tell me his feet are "broke". But then an hour later be wrestling with his Bubba just fine.
We are keeping our prayers strong, and are a mix of excitment and nervousness for the answers that may soon come.
Thank you to everyone who has been following Cooper and praying. We could not ask for a better group of friends and family!!
Love Always,
Kirby, Summer, Cooper, and Clyde
We hope everyone is doing well. We are super busy with doctors appointments and testing these days, which is wonderful because we might actually get some answers.
On Thursday we went and saw the neurosurgeon. While in his office he pulled up the MRI images and showed us what they were looking at. They showed us his tail bone and how there was no connecting tissue, thus no tether spinal cord. Then they showed us how all his vertebra were one color, then his s1 vertebra was a completely different shade then all of the others. They believe this is possibly the problem.
They are scheduling us for a bone scan as well as a CT scan. Since Cooper will need to be sedated for these they are going to use the CT scan to take a biopsy of the vertebra. The neurosurgeon warned us that they may still need to do open surgery to get a larger portion of bone. But we will wait and see.
They would like all of these test to be complete be fore we go see the hematologist on Friday. The hematologist make look over all of the testing and have some sort of answers for us and we will not have to have the open surgery.
Hopefully this will all come to an end soon. Cooper has moments where he can not walk or stand for 15-20 minutes and it is so hard to hear him tell me his feet are "broke". But then an hour later be wrestling with his Bubba just fine.
We are keeping our prayers strong, and are a mix of excitment and nervousness for the answers that may soon come.
Thank you to everyone who has been following Cooper and praying. We could not ask for a better group of friends and family!!
Love Always,
Kirby, Summer, Cooper, and Clyde
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