Love,
Courtney, Marcus, & Cal
Faith Hope Family Religious Christmas Card
Personalize the christmas season with Christmas photo cards.
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Friday, December 24, 2010
Merry CHRISTmas
Merry Christmas from our family to yours! May the good Lord fulfill you with His promises and bestow on you His many blessings.
Love,
Courtney, Marcus, & Cal
Love,
Courtney, Marcus, & Cal
Sunday, December 19, 2010
Photo Books
Over the past few months, I have taken up a new hobby....scrapbooking. However, it isn't your typical scrapbooking with tape, cut-outs, stickers, and stuff all over the table. It is scrapbooking online!
A few months back, I received an e-mail from Shutterfly that offered me a FREE 8x8 photo book. I was not sure what it was or how to do it, but I clicked the link anyway. That day I created my first photo book and had so much fun doing it! Since then, I have created two more and am in the process of my fourth one. It is a process to get one finished because I don't have time to work on it all day every day. However, that is what is so great about it being online. I can save it and come back to it tomorrow, next week, or next month.
I have shared the three that I have already created. Each photo book is in a separate post below this one.
I hope you all enjoy looking at the books as much as I enjoyed making them!
A few months back, I received an e-mail from Shutterfly that offered me a FREE 8x8 photo book. I was not sure what it was or how to do it, but I clicked the link anyway. That day I created my first photo book and had so much fun doing it! Since then, I have created two more and am in the process of my fourth one. It is a process to get one finished because I don't have time to work on it all day every day. However, that is what is so great about it being online. I can save it and come back to it tomorrow, next week, or next month.
I have shared the three that I have already created. Each photo book is in a separate post below this one.
I hope you all enjoy looking at the books as much as I enjoyed making them!
Friday, December 10, 2010
A Month Later....
It has been almost a month since my last post...sorry about that.
The last time I posted we had just increased Cal's medicine to keep him comfortable, and it WORKED! It kept him comfortable until about a week ago. We started noticing that he was crying out in pain again and could not make it the whole 8 hours. So, when the nurse came out Tuesday, we increased the medicine again. However, the nurse and doctor were pleased that we went until now without needing to increase the dose.
Over the past month, we have really had some good days. We have been able to spend time as a family and make memories with Cal that will last forever. One of my favorite memories was with the child life specialist from hospice. She came to our house one day to make 3D molds of Cal's hands and feet. They are absolutely precious! It is something we will have forever.
On another good note, Marcus is home with us now for a month! He just finished up his semester on Wednesday. No more classes and studying for finals! I could not be more proud of him. He works so hard and deserves a break. I am so excited to have him home. I look forward to more memories being made over the next month while he is home.
We continue to take it day by day, and thank God for every day we have with Cal. We praise God for keeping Cal comfortable and for giving us the strength we need to take care of our precious angel. God does not give us more than we can handle.
Thank you for all the love, support, and prayers we continue to get. Words can not express how grateful we are to all of you. We are truly BLESSED!
The last time I posted we had just increased Cal's medicine to keep him comfortable, and it WORKED! It kept him comfortable until about a week ago. We started noticing that he was crying out in pain again and could not make it the whole 8 hours. So, when the nurse came out Tuesday, we increased the medicine again. However, the nurse and doctor were pleased that we went until now without needing to increase the dose.
Over the past month, we have really had some good days. We have been able to spend time as a family and make memories with Cal that will last forever. One of my favorite memories was with the child life specialist from hospice. She came to our house one day to make 3D molds of Cal's hands and feet. They are absolutely precious! It is something we will have forever.
On another good note, Marcus is home with us now for a month! He just finished up his semester on Wednesday. No more classes and studying for finals! I could not be more proud of him. He works so hard and deserves a break. I am so excited to have him home. I look forward to more memories being made over the next month while he is home.
We continue to take it day by day, and thank God for every day we have with Cal. We praise God for keeping Cal comfortable and for giving us the strength we need to take care of our precious angel. God does not give us more than we can handle.
Thank you for all the love, support, and prayers we continue to get. Words can not express how grateful we are to all of you. We are truly BLESSED!
Sunday, November 14, 2010
Update on Cal's Comfort
We are still in the process of getting Cal comfortable. We have been on the new medicine a little over a week now. He is doing better, but he is not completely comfortable yet. The new medicine is called methadone and seems to be the answer. I just don't think we are to the right dose yet. We can only increase the dose every few days. We started at 1 mL every 12 hours on November 4th. Then, we went to 1 mL every 8 hours on November 8th. The dose changed again on Friday, and we are now at 1.25 mL every 8 hours. We continue to give morphine for break through pain. However, the doctor said that we will eventually get to a dose of the methadone where there should be no break through pain. We can't wait for that day to come! Until then, we continue to take it day by day. Please say a prayer that we are getting close to the dose of methadone that keeps Cal comfortable all day.
Friday, November 5, 2010
Hospice Update
We have had hospice now for a week. We are still in the process of getting Cal comfortable. It is very frustrating, but I know it isn't there fault. I was just expecting to get hospice and him be comfortable instantly...wrong! It is a process.
It started last Thursday night. A nurse came to our house about 8:30 p.m. to bring Ativan. This was supposed to help him relax and sleep, but instead, he was up all night screaming. Cal reacted the opposite of what they expected. He cried until the next day when the nurse came back out with morphine. The morphine worked at first, but over the next 24 hours, it didn't take care of his pain like the first dose. So, Friday and Saturday night, they suggested that we have continuous care which means a nurse stayed over night with us. We seemed to be making some progress and told the nurse on Saturday that we were good and didn't need a nurse for Sunday night. However, that was not the case once the nurse left. The next few days were difficult. Cal cried often and was very uncomfortable still. We adjusted his morphine dose and frequency of the dose and still didn't get relief. So, yesterday they suggested that we change medicine once again because the morphine didn't seem to be controlling his pain. During the process of changing medicine, however, they suggested that we stay in the hospice unit at Baylor All Saints Medical Center in downtown Fort Worth. They wanted us to be under doctor care because of how he reacted to the Ativan. So, we drove up there last night and expected to stay through the weekend until we got his medicine right. Unfortunately, the hospice unit was not what we expected. It was very disappointing, and the care for Cal was below average. With that being said, I told the nurse at 10:30 last night that we wanted to come home and continue the care at home. They were not doing anything for him that we couldn't do at home. We were discharged at 12:30 and got home about 1:15 this morning. Our primary nurse is on her way out here to bring us the new medication and discuss where to go from here. I guess we will try the new medicine for a couple of days and pray that it works for Cal. It is used for nerve pain, and with his disease being neurological, the doctors feel like this medicine will work. I sure hope so because Cal needs relief.
We appreciate the cards, calls, and texts, and everyone's continued love, support and prayers.
It started last Thursday night. A nurse came to our house about 8:30 p.m. to bring Ativan. This was supposed to help him relax and sleep, but instead, he was up all night screaming. Cal reacted the opposite of what they expected. He cried until the next day when the nurse came back out with morphine. The morphine worked at first, but over the next 24 hours, it didn't take care of his pain like the first dose. So, Friday and Saturday night, they suggested that we have continuous care which means a nurse stayed over night with us. We seemed to be making some progress and told the nurse on Saturday that we were good and didn't need a nurse for Sunday night. However, that was not the case once the nurse left. The next few days were difficult. Cal cried often and was very uncomfortable still. We adjusted his morphine dose and frequency of the dose and still didn't get relief. So, yesterday they suggested that we change medicine once again because the morphine didn't seem to be controlling his pain. During the process of changing medicine, however, they suggested that we stay in the hospice unit at Baylor All Saints Medical Center in downtown Fort Worth. They wanted us to be under doctor care because of how he reacted to the Ativan. So, we drove up there last night and expected to stay through the weekend until we got his medicine right. Unfortunately, the hospice unit was not what we expected. It was very disappointing, and the care for Cal was below average. With that being said, I told the nurse at 10:30 last night that we wanted to come home and continue the care at home. They were not doing anything for him that we couldn't do at home. We were discharged at 12:30 and got home about 1:15 this morning. Our primary nurse is on her way out here to bring us the new medication and discuss where to go from here. I guess we will try the new medicine for a couple of days and pray that it works for Cal. It is used for nerve pain, and with his disease being neurological, the doctors feel like this medicine will work. I sure hope so because Cal needs relief.
We appreciate the cards, calls, and texts, and everyone's continued love, support and prayers.
Wednesday, October 27, 2010
Hospice
After a lot of prayer and discussion with our families, we have made the decision to bring in hospice for Cal. It was not an easy decision to make. However, with Cal's discomfort increasing, we knew in our hearts this was the right decision.
When we met with Dr. McKenzie two weeks ago and she mentioned hospice, I struggled with the thought of it because I thought as soon as they came in we wouldn't have long with Cal. Since then, I have learned that is not the case. They will provide Cal with medicine and equipment (if needed) to keep him comfortable, and that is our main purpose right now...comfort.
With that being said, I made the call on Monday and we got an appointment for yesterday afternoon. A registered nurse and a child life specialist came to our home to visit with us. The RN was an older gentleman that was very kind and soft spoken. He explained everything to us about the company. They have a pediatric team that will be assigned to Cal. We do not need round the clock care at this point, but the care is there when the time comes. We will start out with a primary nurse that will check on Cal once a week to make sure the medicine is keeping him comfortable.
It was a sad day yesterday because reality was setting in for our family. Cal is not getting better. He is getting worse. However, in the midst of our tears, I felt peace. I have prayed long and hard about whether or not to bring hospice in, and I know we made the right decision.
We appreciate all the love, support, and prayers we continue to get from near and far.
When we met with Dr. McKenzie two weeks ago and she mentioned hospice, I struggled with the thought of it because I thought as soon as they came in we wouldn't have long with Cal. Since then, I have learned that is not the case. They will provide Cal with medicine and equipment (if needed) to keep him comfortable, and that is our main purpose right now...comfort.
With that being said, I made the call on Monday and we got an appointment for yesterday afternoon. A registered nurse and a child life specialist came to our home to visit with us. The RN was an older gentleman that was very kind and soft spoken. He explained everything to us about the company. They have a pediatric team that will be assigned to Cal. We do not need round the clock care at this point, but the care is there when the time comes. We will start out with a primary nurse that will check on Cal once a week to make sure the medicine is keeping him comfortable.
It was a sad day yesterday because reality was setting in for our family. Cal is not getting better. He is getting worse. However, in the midst of our tears, I felt peace. I have prayed long and hard about whether or not to bring hospice in, and I know we made the right decision.
We appreciate all the love, support, and prayers we continue to get from near and far.
Sunday, October 24, 2010
Something to think about......
As I sit here on this beautiful Sunday afternoon, there is a question that I have been thinking about a lot lately and feel compelled to write about it.
Do you take things for granted? Do you really take in everything and appreciate what God has given you or do you expect it and go on about your day to day life?
My friend Hillary came down to Cleburne this past Tuesday to have dinner with Cal and I while Marcus was in class. I remember her telling me after she got home that night that she didn't realize the things that Cal couldn't do that so many people take for granted. She said that Cal couldn't even raise his head to look at me or put his arms out to hug me. She said she didn't realize this until she came down and saw him. I think most people think Cal is good when they see his pictures because he does "look" healthy. Most people in stores and restaurants that don't know us or Cal just think he is "sleepy". But if you really think about a 19 month old and what they should be doing, Cal has never been able to do any of it.
Throughout this journey, I have definitely realized many people take things for granted and don't even realize it because they are so busy. There have been so many times in the store where I want to walk up to people and tell them to be grateful that they can even take their kids to the store with them because I can't. I am not trying to have a pity party, but I just hope to encourage people to start thinking about it. So, please just take a minute and ask yourself these things. It doesn't matter what point of view you ask these from. You could be a grandparent asking these about your grandchildren. You could be a mother/father-to-be asking it about your future children. You could be a parent asking it about the child you have right now.
Do I take for granted that....
- my child can hold his/her head up on their own?
- my child can roll over?
- my child can smile at me?
- my child can hug me?
- my child can call me mommy/daddy?
- my child can play with his/her toys?
- my child can sit up in the bath by his/herself?
- my child can eat what I cook?
- my child can walk and talk?
- my child can breath on his/her own?
- I don't have to take my child to the doctor at least once a month?
- I don't have to get a shipment of medical supplies every month to be able to feed and medicate my child?
- my child can go to school?
- my child will graduate/go to college/get married?
The list could go on and on.
I know we are not the only parents going through this. There are many families with special needs children. I am not trying to get people to feel sorry for us. I know not everyone takes things for granted but a lot of people do including us before this happened. We went about our busy lives not appreciating the small things. Our journey with Cal has definitely made us appreciate life so much more. Marcus and I still have a 19 month old infant, but I absolutely love his sweet, silent stares at me. I love holding him in my arms and telling him how much I love him. Do I wish he could hug me or say mommy or tell me he loves me back? Yes! But I am so grateful for the sweet, silent moments we share.
All I ask is that after reading this, slow down, take one day at a time and appreciate what God has blessed you with. It doesn't only have to be about your children. Be grateful for your job. Be grateful for your home. Be grateful for a car to drive. Be grateful for food on the table. Do not take anything for granted! Enjoy your family and friends! Enjoy this beautiful life God has given you! It could all change in an instant for anyone.
We appreciate all the love, support, and prayers that we continue to get from family, friends, and people that we don't even know. We love you all!
Do you take things for granted? Do you really take in everything and appreciate what God has given you or do you expect it and go on about your day to day life?
My friend Hillary came down to Cleburne this past Tuesday to have dinner with Cal and I while Marcus was in class. I remember her telling me after she got home that night that she didn't realize the things that Cal couldn't do that so many people take for granted. She said that Cal couldn't even raise his head to look at me or put his arms out to hug me. She said she didn't realize this until she came down and saw him. I think most people think Cal is good when they see his pictures because he does "look" healthy. Most people in stores and restaurants that don't know us or Cal just think he is "sleepy". But if you really think about a 19 month old and what they should be doing, Cal has never been able to do any of it.
Throughout this journey, I have definitely realized many people take things for granted and don't even realize it because they are so busy. There have been so many times in the store where I want to walk up to people and tell them to be grateful that they can even take their kids to the store with them because I can't. I am not trying to have a pity party, but I just hope to encourage people to start thinking about it. So, please just take a minute and ask yourself these things. It doesn't matter what point of view you ask these from. You could be a grandparent asking these about your grandchildren. You could be a mother/father-to-be asking it about your future children. You could be a parent asking it about the child you have right now.
Do I take for granted that....
- my child can hold his/her head up on their own?
- my child can roll over?
- my child can smile at me?
- my child can hug me?
- my child can call me mommy/daddy?
- my child can play with his/her toys?
- my child can sit up in the bath by his/herself?
- my child can eat what I cook?
- my child can walk and talk?
- my child can breath on his/her own?
- I don't have to take my child to the doctor at least once a month?
- I don't have to get a shipment of medical supplies every month to be able to feed and medicate my child?
- my child can go to school?
- my child will graduate/go to college/get married?
The list could go on and on.
I know we are not the only parents going through this. There are many families with special needs children. I am not trying to get people to feel sorry for us. I know not everyone takes things for granted but a lot of people do including us before this happened. We went about our busy lives not appreciating the small things. Our journey with Cal has definitely made us appreciate life so much more. Marcus and I still have a 19 month old infant, but I absolutely love his sweet, silent stares at me. I love holding him in my arms and telling him how much I love him. Do I wish he could hug me or say mommy or tell me he loves me back? Yes! But I am so grateful for the sweet, silent moments we share.
All I ask is that after reading this, slow down, take one day at a time and appreciate what God has blessed you with. It doesn't only have to be about your children. Be grateful for your job. Be grateful for your home. Be grateful for a car to drive. Be grateful for food on the table. Do not take anything for granted! Enjoy your family and friends! Enjoy this beautiful life God has given you! It could all change in an instant for anyone.
We appreciate all the love, support, and prayers that we continue to get from family, friends, and people that we don't even know. We love you all!
Sunday, October 17, 2010
Update
First, I want to say how excited we are about the response we got from the last post about the walk! We had so many people that want to come to Houston to walk with us in February. It will be a great day to spend together and raise awareness for mitochondrial disease. Remember if you can’t go to Houston, you can walk with us virtually from home.
Next, I had a lot of people that said they wanted to comment on the post last time but had to have a profile and didn’t know what to do. I believe all you have to do is create an account with a username and password. Once you do that, you can leave comments.
Finally, I wanted to update everyone on the latest news. I took Cal to the doctor last Monday, October 11th. It was just an appointment with his pediatrician to get his 18 month shots. What was supposed to be a simple visit to get shots turned into a very sad and emotional day. My mom was with me at the doctor that day, and we ended up having a very intense and emotional talk with Dr. McKenzie. Dr. McKenzie mentioned that his breathing was very shallow. She also told me that she thought it was time for me to stay home with Cal. I think it shocked me at first because we have been going about our daily routine and a part of me forgets that Cal has a terminal illness. I have just been waiting for the day to come where he is healed. I think I was so upset because I felt like my hope was gone. I did appreciate Dr. McKenzie being so honest with me though. She is the best doctor I have ever seen in my 26 years of life. She is caring and so compassionate. She told me that this is time I won’t be able to get back with Cal, and I couldn’t agree with her more. She said we can always make more money but we can’t have more time. So, with that being said, I called in for a sub on Tuesday and haven’t been back to school. I will be off for six months and looking forward to every minute I get to spend with Cal. I am so blessed to work for a principal that is caring and compassionate, too.
Another thing we talked about on Monday was hospice. Dr. McKenzie wanted me to spend a month with Cal by myself at home and then start to think about hospice. However, I think we might be looking into it a little sooner. Cal is very uncomfortable and has a lot of secretions in his throat. The only way to get medicine to help those things is through hospice. It is the hardest decision we have had to make thus far. No parent should have to decide when to call hospice. We have to stop being selfish though and help him be comfortable. Wouldn’t we want to be comfortable if we were in pain?
We continue to need your prayers. This is a very difficult journey that we are getting through with our faith in God and love and support from family and friends.
Next, I had a lot of people that said they wanted to comment on the post last time but had to have a profile and didn’t know what to do. I believe all you have to do is create an account with a username and password. Once you do that, you can leave comments.
Finally, I wanted to update everyone on the latest news. I took Cal to the doctor last Monday, October 11th. It was just an appointment with his pediatrician to get his 18 month shots. What was supposed to be a simple visit to get shots turned into a very sad and emotional day. My mom was with me at the doctor that day, and we ended up having a very intense and emotional talk with Dr. McKenzie. Dr. McKenzie mentioned that his breathing was very shallow. She also told me that she thought it was time for me to stay home with Cal. I think it shocked me at first because we have been going about our daily routine and a part of me forgets that Cal has a terminal illness. I have just been waiting for the day to come where he is healed. I think I was so upset because I felt like my hope was gone. I did appreciate Dr. McKenzie being so honest with me though. She is the best doctor I have ever seen in my 26 years of life. She is caring and so compassionate. She told me that this is time I won’t be able to get back with Cal, and I couldn’t agree with her more. She said we can always make more money but we can’t have more time. So, with that being said, I called in for a sub on Tuesday and haven’t been back to school. I will be off for six months and looking forward to every minute I get to spend with Cal. I am so blessed to work for a principal that is caring and compassionate, too.
Another thing we talked about on Monday was hospice. Dr. McKenzie wanted me to spend a month with Cal by myself at home and then start to think about hospice. However, I think we might be looking into it a little sooner. Cal is very uncomfortable and has a lot of secretions in his throat. The only way to get medicine to help those things is through hospice. It is the hardest decision we have had to make thus far. No parent should have to decide when to call hospice. We have to stop being selfish though and help him be comfortable. Wouldn’t we want to be comfortable if we were in pain?
We continue to need your prayers. This is a very difficult journey that we are getting through with our faith in God and love and support from family and friends.
Wednesday, September 29, 2010
What is mitochondrial disease?
If you would have asked me this a year ago, I would have told you that I didn't have a clue what it was. I had never even heard of it. I hate to even admit that I didn't know what mitochondria were. Unfortunately, I can now say I know what it is. However, so many people still don't know about mitochondrial disease, and we need to raise awareness so that a cure can be found.
Mitochondrial disease is a disease that affects your energy. If your mitochondria aren't working, then your body doesn't have the energy it needs to function. A friend that we have met on this journey has a son and daughter with mitochondrial disease, too, and she explained it like this......
The mitochondria are equivalent to a battery. They make the power for things to work. When the TV remote's battery dies, the remote can't do a thing until the battery is replaced. You may be able to coax a few more uses out of that battery. You take the cover off and spin the batteries. You shake and hit the remote. If you stand in just the right spot, you may get the volume adjusted a bit. But, ultimately, you know the battery is done. The same works for our mitochondria. When they are sick, they lose the ability to power our body. We can do little things to improve their function... take vitamins, avoid stressors, preserve the energy used, but ultimately, the mitochondria are failing. But, unlike the TV remote, there is no way to replace the power source. No fix. No treatment. No cure.
My hope and dream is to find a cure. I hope to one day hear Cal talk. I hope to one day see him walk. I hope for the day that he can give me a hug. I hope for so many things that so many take forgranted. I hope that some day we will talk about the medical obstacles that he has overcome. I hope for a miracle!
Our only hope for finding that cure is by raising awareness and supporting research so that a cure can be found. There will be a walk in Houston on February 5th to raise awareness for this disease. It is very similar to the walks for cancer and other diseases. We have a team that will be walking in honor of Cal. If you would be interested in going to Houston and walking with us, we would LOVE to have you! We will have shirts made for our team that we will wear for the walk. Just let me know if you want to join us. If you can't be there, there is a virtual walker option where you could walk with us on the computer from your home. I will let you know more about that the closer it gets if you are interested. If you would like to help but can't walk with us, we would appreciate any donations. Your donations will go towards finding a cure for this disease. Any support whether it be walking with us or donating to the cause is appreciated. Please help us spread the word and put an end to this devastating disease!
Mitochondrial disease is a disease that affects your energy. If your mitochondria aren't working, then your body doesn't have the energy it needs to function. A friend that we have met on this journey has a son and daughter with mitochondrial disease, too, and she explained it like this......
The mitochondria are equivalent to a battery. They make the power for things to work. When the TV remote's battery dies, the remote can't do a thing until the battery is replaced. You may be able to coax a few more uses out of that battery. You take the cover off and spin the batteries. You shake and hit the remote. If you stand in just the right spot, you may get the volume adjusted a bit. But, ultimately, you know the battery is done. The same works for our mitochondria. When they are sick, they lose the ability to power our body. We can do little things to improve their function... take vitamins, avoid stressors, preserve the energy used, but ultimately, the mitochondria are failing. But, unlike the TV remote, there is no way to replace the power source. No fix. No treatment. No cure.
My hope and dream is to find a cure. I hope to one day hear Cal talk. I hope to one day see him walk. I hope for the day that he can give me a hug. I hope for so many things that so many take forgranted. I hope that some day we will talk about the medical obstacles that he has overcome. I hope for a miracle!
Our only hope for finding that cure is by raising awareness and supporting research so that a cure can be found. There will be a walk in Houston on February 5th to raise awareness for this disease. It is very similar to the walks for cancer and other diseases. We have a team that will be walking in honor of Cal. If you would be interested in going to Houston and walking with us, we would LOVE to have you! We will have shirts made for our team that we will wear for the walk. Just let me know if you want to join us. If you can't be there, there is a virtual walker option where you could walk with us on the computer from your home. I will let you know more about that the closer it gets if you are interested. If you would like to help but can't walk with us, we would appreciate any donations. Your donations will go towards finding a cure for this disease. Any support whether it be walking with us or donating to the cause is appreciated. Please help us spread the word and put an end to this devastating disease!
Sunday, September 26, 2010
A Year Later
Friends & Family~
It has been awhile since I have posted on here (nearly a year). I have wanted to post updates over the past year but could not find the time to sit down and do it. I am finding the time now though. Better late than never...right?
As many of you know, our family has been through a lot over the past year. Last year in November when my friend Katie started this blog for us, it was our first visit to Houston with Cal. We had taken Cal to Houston for a second opinion. We were trying to find out what was causing his problems (seizures, no tone, etc.). We had definitely gone to the right place because the doctors we found in Houston were definitely devoted to finding what was wrong with our sweet boy. And that they did. After many tests in November and a muscle biopsy in January, our diagnosis came in February...mitochondrial disorder. It is not what we wanted to hear but we believe in a God who heals and continued to pray for healing for Cal. We wound up in the hospital again in May. We were there for two weeks. During that time, Cal had another MRI done. The results this time showed "spots" developing on his brain which led the doctor to diagnose Cal even further...Leigh's Syndrome. The doctor was very sensitive to our feelings but at the same time very honest. She told us that it seemed to be progressing quickly and that it was terminal. This is not what any parent wants to hear about their son or daughter! It was out of our control though, and once again, we continued to pray for healing. While we were there in May, Cal also had a "G" button put in. It is our way to feed him and give him his medicines. Once home from the hospital, we continued to try and feed him bottles. However, he can no longer eat by mouth and takes everything through his button. In June, we went back to Houston for a sleep study. Cal has a very difficult time sleeping at night. We were trying to figure out if there was something causing him not to sleep. The result came back that he was having trouble breathing at night. So, they ordered us oxygen for him at night. He fights it though and does not like it at all. We just recently went down for a second sleep study a week ago. This time they put a bi-pap machine on him. The pulmonologist seemed to think this would help him sleep better than just the oxygen. We were hopeful but it turned out to be awful! He cried all night. We are still fighting the sleep battle. He is starting to have nights were he will sleep all night but not consistently yet.
We are back home now and enjoying every minute that we have together. Marcus is in his last year of law school, and I could not be more proud of him. He is a wonderful dad and husband. I am still teaching. I love it but wish I could stay home with my sweet baby.
We appreciate the continued prayers, love, and support. Even though I haven't posted in a year, I know many of you have not stopped praying for Cal. We serve a loving
God and believe in His healing and know that he performs miracles every day.
Courtney
It has been awhile since I have posted on here (nearly a year). I have wanted to post updates over the past year but could not find the time to sit down and do it. I am finding the time now though. Better late than never...right?
As many of you know, our family has been through a lot over the past year. Last year in November when my friend Katie started this blog for us, it was our first visit to Houston with Cal. We had taken Cal to Houston for a second opinion. We were trying to find out what was causing his problems (seizures, no tone, etc.). We had definitely gone to the right place because the doctors we found in Houston were definitely devoted to finding what was wrong with our sweet boy. And that they did. After many tests in November and a muscle biopsy in January, our diagnosis came in February...mitochondrial disorder. It is not what we wanted to hear but we believe in a God who heals and continued to pray for healing for Cal. We wound up in the hospital again in May. We were there for two weeks. During that time, Cal had another MRI done. The results this time showed "spots" developing on his brain which led the doctor to diagnose Cal even further...Leigh's Syndrome. The doctor was very sensitive to our feelings but at the same time very honest. She told us that it seemed to be progressing quickly and that it was terminal. This is not what any parent wants to hear about their son or daughter! It was out of our control though, and once again, we continued to pray for healing. While we were there in May, Cal also had a "G" button put in. It is our way to feed him and give him his medicines. Once home from the hospital, we continued to try and feed him bottles. However, he can no longer eat by mouth and takes everything through his button. In June, we went back to Houston for a sleep study. Cal has a very difficult time sleeping at night. We were trying to figure out if there was something causing him not to sleep. The result came back that he was having trouble breathing at night. So, they ordered us oxygen for him at night. He fights it though and does not like it at all. We just recently went down for a second sleep study a week ago. This time they put a bi-pap machine on him. The pulmonologist seemed to think this would help him sleep better than just the oxygen. We were hopeful but it turned out to be awful! He cried all night. We are still fighting the sleep battle. He is starting to have nights were he will sleep all night but not consistently yet.
We are back home now and enjoying every minute that we have together. Marcus is in his last year of law school, and I could not be more proud of him. He is a wonderful dad and husband. I am still teaching. I love it but wish I could stay home with my sweet baby.
We appreciate the continued prayers, love, and support. Even though I haven't posted in a year, I know many of you have not stopped praying for Cal. We serve a loving
God and believe in His healing and know that he performs miracles every day.
Courtney
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