Cameron attends occupational and physical therapy at Hope Therapy. We go Monday for OT, Wednesday for OT and PT and Friday for OT and PT as well. So, obviously we spend a lot of time there. If your child or a child you know needs therapy I highly recommend them. Everyone there is just so amazing. We have been blessed with wonderful therapists. The thing I have appreciated the most about this place is how much they care for Cameron. It's not just work for them. They love what they do and it shows.
Today Cam went for OT and PT and his therapists told me that he did great. They are both very optimistic and think he may even crawl soon. Even though we are worried about what the doctors say about Cameron becoming paralyzed it seems like our little guy just isn't quite ready to give up.
Enjoy these videos of my little one having fun with his PT Haila.
Cameron has been doing great these past few days. He is still having a difficult time teething, but he has been eating well and enjoys playing around the house in his Bronco Pony (special walker) that we are borrowing. Big brother Caden loves it when Cam is in his walker because he can then ride his tricycle along side and they both giggle like crazy to one another. I love seeing them laugh together.
Wednesday, October 27, 2010
Tuesday, October 26, 2010
Donations
I have been getting asked by many people how they can make donations to help Cameron. Thank you all so much for that. I have truly been touched by everyone's concern.
I have set up a chipin account for Cameron. Any donations that you feel set in your heart to make will be greatly appreciated no matter how small. Please do not feel obligated to give. Your thoughts and prayers are just as important and needed.
All donations will go towards helping to pay for Cameron's medical bills and doctors appointments and maybe even one day we can purchase him his very own gait trainer.
If you would like to donate you may click here. Or go to the widget on the side of this page.
I have set up a chipin account for Cameron. Any donations that you feel set in your heart to make will be greatly appreciated no matter how small. Please do not feel obligated to give. Your thoughts and prayers are just as important and needed.
All donations will go towards helping to pay for Cameron's medical bills and doctors appointments and maybe even one day we can purchase him his very own gait trainer.
If you would like to donate you may click here. Or go to the widget on the side of this page.
Monday, October 25, 2010
Photo Update
I finally got around to loading a ton of photos onto the computer so I thought I would share.
Cameron is doing well. He is having a hard time cutting teeth, but we are making it! He had OT (occupational therapy) and he did great. We were blessed with amazing therapists and that makes a world of difference.
Caden recently began going to gymnastics and he absolutely loves it. It is so great to see him thriving and enjoying himself.
We are currently waiting to get appointments with a couple of different specialists, but no news yet.
Feel free to ask any questions and I will do my best to answer back. :)
Please continue to pray for Cameron and our family.
Psalm 31:7
I will be glad and rejoice in your love, for you saw my affliction and knew the anguish of my soul.
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| At the ranch. |
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| Sweet brother kisses before his first EEG. |
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| All cried out and sleeping during his first EEG. |
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| One of his favorite spots. |
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| Caden getting ready for Halloween. |
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| Caden and I getting ready for our RV trip for Cameron's doctors appointments. |
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| The EEG Camera monitoring system for Cam's 4 hour EEG. |
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| Getting all set and being such a big boy about it. |
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| Sweet smiles. |
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| Nothing slows my baby down. |
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| Sweet Daddy watching over Cam. |
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| He makes a handsome mummy. |
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| Trying to make it through the four hours! |
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| The boys watching a movie in the RV. |
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| When Cameron woke from all of his tests (MRI, MRS, LP) |
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| Finally getting some fluids. |
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| Loving on big brother. |
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| He loved the corn box! :) |
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| Brenton, Cameron and Caden. |
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| Beautiful Boy. |
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| Fun duck races. |
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| Great Grandma loving on her babes. |
Cameron is doing well. He is having a hard time cutting teeth, but we are making it! He had OT (occupational therapy) and he did great. We were blessed with amazing therapists and that makes a world of difference.
Caden recently began going to gymnastics and he absolutely loves it. It is so great to see him thriving and enjoying himself.
We are currently waiting to get appointments with a couple of different specialists, but no news yet.
Feel free to ask any questions and I will do my best to answer back. :)
Please continue to pray for Cameron and our family.
Psalm 31:7
I will be glad and rejoice in your love, for you saw my affliction and knew the anguish of my soul.
Friday, October 15, 2010
Blood Tests
I spoke with Cameron's neurologist yesterday afternoon for quite a while. He told me that he had most of the blood test results in and that they indicated that Cameron does not have Metachromatic Leukodystrophy. Now we are waiting on the results from the test for Pelizaeus-Merzbacher. That particular test can take up to 28 days to complete.
Dr. Foster told me that we need to see an Ophthalmologist that specializes in metabolic disease so that we may be able to figure a few more things out. He also told me that the damage on Cameron's MRI is very extensive and that Cameron has almost no white matter at all. He told me that based on the spastic movements of Cameron's arms that he thinks he will begin having more difficulty eating and keeping food down soon. Dr. Foster also told me that we may never know the name of Cameron's disease. He said that these white matter diseases are very rare and difficult to diagnose.
This is all very confusing to us, but we are doing our best to maintain a normal routine for the boys. We took Cameron to our Wednesday night church service this week and we had the nicest people pray for him. We feel so blessed to have so many behind us and praying for a miracle.
2 Corinthians 4:17-18
For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.
John 14:1-2
Do not let your hearts be troubled. Trust in God: trust also in me.
Dr. Foster told me that we need to see an Ophthalmologist that specializes in metabolic disease so that we may be able to figure a few more things out. He also told me that the damage on Cameron's MRI is very extensive and that Cameron has almost no white matter at all. He told me that based on the spastic movements of Cameron's arms that he thinks he will begin having more difficulty eating and keeping food down soon. Dr. Foster also told me that we may never know the name of Cameron's disease. He said that these white matter diseases are very rare and difficult to diagnose.
This is all very confusing to us, but we are doing our best to maintain a normal routine for the boys. We took Cameron to our Wednesday night church service this week and we had the nicest people pray for him. We feel so blessed to have so many behind us and praying for a miracle.
2 Corinthians 4:17-18
For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.
John 14:1-2
Do not let your hearts be troubled. Trust in God: trust also in me.
Wednesday, October 13, 2010
Thank You
I just wanted to take a moment to say thanks to all of you wonderful friends and family out there reading our story. I have been getting calls and emails constantly about prayers for Cameron and it is so deeply appreciated.
This is a difficult time for our family, but we will make it through together. It has been a struggle for me to figure out how I am supposed to just go on with my days like everything is OK when it is so far from it.
I thought I would share a few scriptures that are helping me through it.
1 Thessalonians 5:18
give thanks in all circumstances, for this is God's will for you in Christ Jesus.
Jeremiah 17:14
Heal me, O Lord, and I will be healed: save me and I will be saved, for you are the one I praise.
Ephesians 3:16-17
I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in Love...
Isaiah 40:29
He gives strength to the weary and increases the power of the weak.
This is a difficult time for our family, but we will make it through together. It has been a struggle for me to figure out how I am supposed to just go on with my days like everything is OK when it is so far from it.
I thought I would share a few scriptures that are helping me through it.
1 Thessalonians 5:18
give thanks in all circumstances, for this is God's will for you in Christ Jesus.
Jeremiah 17:14
Heal me, O Lord, and I will be healed: save me and I will be saved, for you are the one I praise.
Ephesians 3:16-17
I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in Love...
Isaiah 40:29
He gives strength to the weary and increases the power of the weak.
Friday, October 8, 2010
Cameron's Diagnoses
Yesterday Cody Cameron and I took a trip to Houston to speak with Cameron's doctors about his condition and all of his test results. Cameron has been vomiting more each day and seems to be uncomfortable. The doctor had most of the results in already thankfully.
Cameron's MRI showed much more damage than the last one from 6 months ago which tells the doctor that he does indeed have a progressive brain disease. His white matter is disappearing and his corpus callosum is very thin. The white matter is what insulates your brain and the corpus callosum is what connects the two hemispheres of the brain. You can read more about that here.
Dr. Foster told us that Cameron has a genetic disease called Leukodystrophy. It is fatal and there is no cure or treatment. There are 34 different kinds of Leukodystrophy so yesterday we began more testing to try and determine which one Cameron has. Dr. Foster also suggested that we consult a gastro doc soon because he fears that Cameron will be needing a feeding tube because of the vomiting and said it was inevitable.
The doctor thinks that Cameron most likely has Metachromatic Leukodystrophy or MLD:
Cameron's MRI showed much more damage than the last one from 6 months ago which tells the doctor that he does indeed have a progressive brain disease. His white matter is disappearing and his corpus callosum is very thin. The white matter is what insulates your brain and the corpus callosum is what connects the two hemispheres of the brain. You can read more about that here.
Dr. Foster told us that Cameron has a genetic disease called Leukodystrophy. It is fatal and there is no cure or treatment. There are 34 different kinds of Leukodystrophy so yesterday we began more testing to try and determine which one Cameron has. Dr. Foster also suggested that we consult a gastro doc soon because he fears that Cameron will be needing a feeding tube because of the vomiting and said it was inevitable.
The doctor thinks that Cameron most likely has Metachromatic Leukodystrophy or MLD:
Late Infantile MLD
After a period of apparently normal growth and development, skills such as walking and speech may begin to deteriorate. Once clinical symptoms become noticeable, they often appear to progress rapidly over a period of several months, with alternating periods of stabilization and decline. The child eventually becomes bedridden, unable to speak or feed independently. There may be seizures at this stage, which eventually disappear. Contractures are common and apparently painful. The child is still able to smile and respond to parents at this stage, but eventually may become blind and largely unresponsive. Swallowing eventually becomes difficult and a feeding tube becomes necessary. With modern treatment and care, the child may survive for 5-10 years. Death generally occurs as the result of an infection such as pneumonia, as opposed to being a direct result of the MLD. Other symptoms that may be encountered are listed below, along with definitions of the medical terminology as necessary.- Developmental delay
- Hypotonia: decreased muscle tone
- Esotropia: cross-eyed
- Psychomotor regression
- Clumsiness
- Spasticity: increased reflexes
- Nystagmus: type of abnormal eye movement
- Weakness
- Decreased speech
- Seizures
- Ataxia: loss of the ability to coordinate muscular movement
- Quadriplegia: paralysis from the neck down
- Eventual absence of voluntary functions
- Worldwide, 1 in every 40,000 to 160,000 people have metachromatic leukodystrophy. In certain populations, the prevalence can be much higher.
Sunday, September 26, 2010
Cameron's Birthday
This post is way past due, but we have been very busy!
Cameron had a great birthday and a fun party. Thanks to everyone that came to celebrate with us. You can see all of the photos on my facebook page: http://www.facebook.com/#!/album.php?aid=94995&id=1218453757
Cameron has been doing incredible in therapy. He seems to have really made progress since we first began. Just last week they started leaning him against the wall to help him learn his balance and he did so good. They also put him on a little step stool and he started pulling up on a rail almost all on his own with only a little bit of support.
Thanks to the wonderful folks at Hope Therapy we didn't have to purchase a gait trainer (walker) for Cameron. We are fortunate enough to get to borrow one from them. He is doing so great in it. He gets so excited that he is able to move all around on his own and Caden is thrilled that he has someone to play with. Caden rides his tricycle all around and it seems like Cameron tries to follow him.
We also went for yet another opinion on Cameron's condition since we have yet to receive a proper diagnoses. We took Cam to see Dr. Crisp in Temple and he seems optimistic and the amazing thing is that he got us in for another EEG this coming Tuesday and we even got scheduled for another MRI for October 4th which is phenomenal considering the other hospital told us they couldn't get us in until December.
I'm not too excited about actually having the test done, but the fact that they are getting us in so soon is encouraging. Our last EEG was tough, and it was only a 30 minute test. This one is 4 hours...yikes. Please keep Cameron in your thoughts and prayers for his test on Tuesday. The prep for his last EEG was horrendous so I am praying it is going to be easier on him somehow this time around.
Cameron had a great birthday and a fun party. Thanks to everyone that came to celebrate with us. You can see all of the photos on my facebook page: http://www.facebook.com/#!/album.php?aid=94995&id=1218453757
Cameron has been doing incredible in therapy. He seems to have really made progress since we first began. Just last week they started leaning him against the wall to help him learn his balance and he did so good. They also put him on a little step stool and he started pulling up on a rail almost all on his own with only a little bit of support.
Thanks to the wonderful folks at Hope Therapy we didn't have to purchase a gait trainer (walker) for Cameron. We are fortunate enough to get to borrow one from them. He is doing so great in it. He gets so excited that he is able to move all around on his own and Caden is thrilled that he has someone to play with. Caden rides his tricycle all around and it seems like Cameron tries to follow him.
We also went for yet another opinion on Cameron's condition since we have yet to receive a proper diagnoses. We took Cam to see Dr. Crisp in Temple and he seems optimistic and the amazing thing is that he got us in for another EEG this coming Tuesday and we even got scheduled for another MRI for October 4th which is phenomenal considering the other hospital told us they couldn't get us in until December.
I'm not too excited about actually having the test done, but the fact that they are getting us in so soon is encouraging. Our last EEG was tough, and it was only a 30 minute test. This one is 4 hours...yikes. Please keep Cameron in your thoughts and prayers for his test on Tuesday. The prep for his last EEG was horrendous so I am praying it is going to be easier on him somehow this time around.
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