I have always been overweight and like most overweight people, I've tried scores of different diets, some more successful than others. I've lost a few pounds and inevitably, gain it back over time, especially after having two kids. I know the statistics, how I'll be healthier and live longer if I lose weight, but of course, I think nothing will really happen to me. For the first time, I no longer have an option of taking my weight lightly (pun intended).
Yesterday, Seamus had a follow-up visit with his liver doctor. We always dance around the topic of transplant at every visit. His opinion is some day Seamus might need one but as long as the liver is still functioning and his lung function does not seem to be compromised by the ever-increasing size of his liver and spleen, then he is not ready. His lung function has actually increased lately due to three months of inhaled antiobiotics but his liver lab work is always borderline okay, some times just under the acceptable numbers and sometimes just over. Every time he gets sick, like the flu-like virus that landed him in the hospital last week, his liver has a very difficult time handling it and bouncing back. So basically we do not know if, or when, the transplant talk will change.
That's where my weight issue comes in. I am the same blood type as Seamus but James is not. That means that I am a candidate to be a living donor for Seamus and I always assumed that would be no problem. Yesterday I found out that one of the biggest donor requirements is weight and I am too fat. It never really occurred to me that the fat is not just hanging off the outside of your body but your organs actually get a layer of fat as well and in order to have a healthy liver, your BMI should be around 23-25. That means I would have to lose more than 45 pounds to be an acceptable donor.
Since his liver could take a turn for the worse very quickly, I really need to be ready at any time. I could not lose 45 pounds immediately if he needs a new liver quickly. He could be listed for a cadaver liver but there is a shortage of organs and you never know the outcome of that.
So I have to take this weight loss thing seriously, extremely seriously, for the first time in my life. It's not a matter of just looking good in my clothes but it could literally save my son's life. I am going to post my progress here for everyone to see. Maybe that will shame me into keeping on track. I could use your support and advice.
2/1/13 - BMI 34.3
Friday, February 1, 2013
Friday, January 11, 2013
Catching Up
So the last two years in a nutshell:
Mackey is almost two and is totally awesome; crazy, and defiant, and full of piss and vinegar. On days when he's throwing temper tantrums and saying nothing but "No, No, No", I may not think he's exactly awesome but to hang with this family you have to be tough and not take anyone's shit. I think he's ready for the challenge.
I am so glad we made the choice we did. Seamus is such a good big brother and the love they share is so special. Mackey absolutely adores his big brother, Bubba, and tries to emulate him in every way. He loves to sneak into the medicine drawer and grab empty syringes and "take his medicine" and we've caught him on a few occasions puffing on dirty nebulizer cups. He is completely obsessed with Dora the Explorer and does a mean Dora dance. Drawing is his other passion, much like his brother.
Mackey spent the first year at home being taken care of by Ga, my mom, who lives with us. After we caught him standing inside the dishwasher a few times and doing laps around the house, we realized he was too much for her to handle. He now goes to daycare and is doing great. His caregivers speak Spanish to him most of the time and he's picked up a lot. When he first started becoming vocal, we thought he was speaking lots of gibberish but then we realized he was speaking Spanish!
Seamus is doing well at his new school. He attends a performing arts school and has drama, art, music, or dance every day. Last year, he skipped a grade so he's now in the second grade. The only downsize is the large class size but that's the same in any public school. The nurse there is great and treats him like her own.
His health has been a concern. He has been hospitalized quite a few times in the last two years (now up to 33 admissions.) Some were for lung exacerbations but most were for GI or liver issues. He was diagnosed with CF liver disease in December 2011 and it has progressed much faster than anyone expected. His liver and spleen have become very enlarged and are in danger of rupturing if he accidentally falls or gets hit. He is not supposed to do any contact sports but he is still allowed to take karate for now. He loves it and is up to a yellow belt but he won't be able to continue much further because he can't spar.
He has cirrhosis and portal hypertension which means his liver has a lot of scar tissue that doesn't allow the blood to flow through. Instead the blood flows back into the stomach and esophagus and the pressure builds up so the blood vessels can burst at any time. He has had some bleeding so they went in and did a banding procedure to cut off the affected blood vessels. Normally, after a few weeks the band sloughs off and heals but in his case it didn't heal and instead formed an ulcer. One night, he woke up vomiting about two cups of blood from the ulcer and had to be rushed to the hospital. It eventually healed but the concern is the next time he needs to be banded, which is definitely a "when" not an "if", it could happen again.
He's starting to question things and some stuff does seem to bother him, but overall he still has a positive outlook. He is starting to have some trouble concentrating in school. We don't know if that's because the work is getting harder, if it's related to the liver disease, or if he's having sleep issues which are common to CF. He is going in for a sleep study soon.
Tonight, bedtime was a circus and James said something about how we aren't a "normal" family. Seamus asked "Is that because of my CF?" That's the first time he ever said anything like that. We told him of course that had nothing to do with it. There's really no such thing as "normal" and if there was, what fun would that be?
Mackey is almost two and is totally awesome; crazy, and defiant, and full of piss and vinegar. On days when he's throwing temper tantrums and saying nothing but "No, No, No", I may not think he's exactly awesome but to hang with this family you have to be tough and not take anyone's shit. I think he's ready for the challenge.
I am so glad we made the choice we did. Seamus is such a good big brother and the love they share is so special. Mackey absolutely adores his big brother, Bubba, and tries to emulate him in every way. He loves to sneak into the medicine drawer and grab empty syringes and "take his medicine" and we've caught him on a few occasions puffing on dirty nebulizer cups. He is completely obsessed with Dora the Explorer and does a mean Dora dance. Drawing is his other passion, much like his brother.
Mackey spent the first year at home being taken care of by Ga, my mom, who lives with us. After we caught him standing inside the dishwasher a few times and doing laps around the house, we realized he was too much for her to handle. He now goes to daycare and is doing great. His caregivers speak Spanish to him most of the time and he's picked up a lot. When he first started becoming vocal, we thought he was speaking lots of gibberish but then we realized he was speaking Spanish!
Seamus is doing well at his new school. He attends a performing arts school and has drama, art, music, or dance every day. Last year, he skipped a grade so he's now in the second grade. The only downsize is the large class size but that's the same in any public school. The nurse there is great and treats him like her own.
His health has been a concern. He has been hospitalized quite a few times in the last two years (now up to 33 admissions.) Some were for lung exacerbations but most were for GI or liver issues. He was diagnosed with CF liver disease in December 2011 and it has progressed much faster than anyone expected. His liver and spleen have become very enlarged and are in danger of rupturing if he accidentally falls or gets hit. He is not supposed to do any contact sports but he is still allowed to take karate for now. He loves it and is up to a yellow belt but he won't be able to continue much further because he can't spar.
He has cirrhosis and portal hypertension which means his liver has a lot of scar tissue that doesn't allow the blood to flow through. Instead the blood flows back into the stomach and esophagus and the pressure builds up so the blood vessels can burst at any time. He has had some bleeding so they went in and did a banding procedure to cut off the affected blood vessels. Normally, after a few weeks the band sloughs off and heals but in his case it didn't heal and instead formed an ulcer. One night, he woke up vomiting about two cups of blood from the ulcer and had to be rushed to the hospital. It eventually healed but the concern is the next time he needs to be banded, which is definitely a "when" not an "if", it could happen again.
He's starting to question things and some stuff does seem to bother him, but overall he still has a positive outlook. He is starting to have some trouble concentrating in school. We don't know if that's because the work is getting harder, if it's related to the liver disease, or if he's having sleep issues which are common to CF. He is going in for a sleep study soon.
Tonight, bedtime was a circus and James said something about how we aren't a "normal" family. Seamus asked "Is that because of my CF?" That's the first time he ever said anything like that. We told him of course that had nothing to do with it. There's really no such thing as "normal" and if there was, what fun would that be?
Thursday, January 10, 2013
Wednesday, February 23, 2011
Surprise!
It's pretty obvious I'm not very good at keeping up with this blog. When I first started, my intentions were to write about the happy times of Seamus' life but this past year has been a pretty rough one and often I found the only things I had to write about were not very happy. Don't get me wrong, even through all the difficult times, there are always moments of joyfulness and fun but sometimes just making it through the day is so exhausting, this blog is the last thing on my mind.
But now I can truly say I have something happy to write about. Cormac Richard Coleman has arrived! In true family fashion, it was not in the easiest manner. I think our family motto should be "If it can done in a more difficult way, we will find it."
I woke up on Valentines Day at 2:00 AM to a very uncomfortable sensation and realized my water had broken, 5 weeks too early. The doctor told me to get to the hospital right away. After having contractions for 7 hours with no dilation, they said I needed a C-section. I had just sent James home to take care of Seamus' morning treatments because I thought it was going to take awhile before any decisions were made but when they decided on the C-section, they meant right then. I had to tell James to quickly come back and he literally almost missed the whole thing. I was in the Operating room on the table within minutes of the birth before he got back.
Cormac was born at 9:39 am, 6 lbs, 19 inches, our perfect little Valentine. You would never knew he was a 35 week preemie.
The rest of our stay was pretty uneventful, after I got over the severe nausea and vomiting from the spinal they gave me. Mac had some breathing issues and spent a night in the NICU but nothing uncommon for a preemie. I also picked up a cough that I thought I got from Seamus when he came to visit. Seamus was just thrilled to meet his little brother.
We were discharged on Thursday and within a couple hours of being home, I was horribly sick with fevers and chills and the doc wanted me to head back to the ER to check for an infection. I spent the whole night getting all kinds of tests and they finally diagnosed me with pneumonia. I stayed in the hospital until Sunday after begging them to let me go home to my baby. They found out I didn't get it from Seamus but got it because of the vomiting which had aspirated into my lungs.
We're all home now and everything is going well. Seamus is such a good brother and can't wait to teach him everything. Pictures to come soon.
On another note, I know some people were confused because on Facebook, I had originally mentioned twins. I was pregnant with twins but we found out early on that one of them was very sick and at 15 weeks, his heart stopped. I wanted to let people know but it was a pretty difficult time and not something you can easily post about on Facebook.
But now I can truly say I have something happy to write about. Cormac Richard Coleman has arrived! In true family fashion, it was not in the easiest manner. I think our family motto should be "If it can done in a more difficult way, we will find it."
I woke up on Valentines Day at 2:00 AM to a very uncomfortable sensation and realized my water had broken, 5 weeks too early. The doctor told me to get to the hospital right away. After having contractions for 7 hours with no dilation, they said I needed a C-section. I had just sent James home to take care of Seamus' morning treatments because I thought it was going to take awhile before any decisions were made but when they decided on the C-section, they meant right then. I had to tell James to quickly come back and he literally almost missed the whole thing. I was in the Operating room on the table within minutes of the birth before he got back.
Cormac was born at 9:39 am, 6 lbs, 19 inches, our perfect little Valentine. You would never knew he was a 35 week preemie.
The rest of our stay was pretty uneventful, after I got over the severe nausea and vomiting from the spinal they gave me. Mac had some breathing issues and spent a night in the NICU but nothing uncommon for a preemie. I also picked up a cough that I thought I got from Seamus when he came to visit. Seamus was just thrilled to meet his little brother.
We were discharged on Thursday and within a couple hours of being home, I was horribly sick with fevers and chills and the doc wanted me to head back to the ER to check for an infection. I spent the whole night getting all kinds of tests and they finally diagnosed me with pneumonia. I stayed in the hospital until Sunday after begging them to let me go home to my baby. They found out I didn't get it from Seamus but got it because of the vomiting which had aspirated into my lungs.
We're all home now and everything is going well. Seamus is such a good brother and can't wait to teach him everything. Pictures to come soon.
On another note, I know some people were confused because on Facebook, I had originally mentioned twins. I was pregnant with twins but we found out early on that one of them was very sick and at 15 weeks, his heart stopped. I wanted to let people know but it was a pretty difficult time and not something you can easily post about on Facebook.
Wednesday, December 29, 2010
For Seamus
One day, Seamus is going to find out the circumstances of his brother's origins and I wanted to write down the story to help him understand.
When you have a child with Cystic Fibrosis, deciding whether to have more children is a difficult decision with much to take into consideration. We did not make this decision lightly.
My childhood was full of moments that I couldn't imagine getting through without my brother being by my side and I know James feels the same way about his siblings. We always wanted Seamus to experience that too. He is definitely in for a bumpy road ahead and there is nothing like the love of a brother or sister.
But we also knew the risks. The chances of having another child with CF was 25% which may not seem like a lot to some people but it's huge when you are looking at your child suffer in the hospital and have to watch him go through all the daily stuff he has to endure just to try to stay healthy.
Another CF mom I know put it well when she said "Women take all kinds of precautions like not eating soft cheeses or raw fish when the chances of that causing a problem are so small. Why would I take the much bigger chance of giving another child a horrible disease like CF?"
If we had another child who did have CF, I can't imagine the guilt I would feel. Not only for bringing the child into the world knowing how much he would suffer, but also knowing I would be affecting Seamus' health as well. The recommendation is that people with CF should not be within 3 feet of each other because of cross contamination but obviously CF children in the same family can not adhere to that. Whenever one grew something in their lungs, they would be sure to give it to the other.
There is one way for two carrier parents to have a child and insure (at least 95%) that they will have not the disease, and after many years of deliberation, that is what we decided to do. It's called Pre-Genetic Diagnosis (PGD) which is used with in vitro fertilization. They can tell as early as 3 days whether an embroyo carries the genes for CF.
It's a very touchy subject in the CF community because people have many opinions about it. Some think we should leave it up to God who does or does not get the disease or they think a cure is going to be found soon, so if another child has it, they will be fine. Some people who have CF feel that if their parents had used PGD they would never have been born and maybe it makes them feel like the world is telling them they shouldn't exist.
I want Seamus to know that is not how we feel at all. We would never, ever change anything about you. You are a kind and compassionate little boy and we know part of that comes from your experiences with CF. We desperately hope for a cure, but with or without one, CF will always be a part of the wonderful person you are.
I hope you can understand why we made the choices we did for your baby brother. We wanted to protect both of you. You are going to be a fantastic big brother and he is going to love you so much, just like Mommy and Daddy.
In no way did I write this post in judgment of other CF parents who may have made a different decision than ours. There is no easy answer and I respect any parents who have to deal with these issues. I ask that you respect our decision as well.
When you have a child with Cystic Fibrosis, deciding whether to have more children is a difficult decision with much to take into consideration. We did not make this decision lightly.
My childhood was full of moments that I couldn't imagine getting through without my brother being by my side and I know James feels the same way about his siblings. We always wanted Seamus to experience that too. He is definitely in for a bumpy road ahead and there is nothing like the love of a brother or sister.
But we also knew the risks. The chances of having another child with CF was 25% which may not seem like a lot to some people but it's huge when you are looking at your child suffer in the hospital and have to watch him go through all the daily stuff he has to endure just to try to stay healthy.
Another CF mom I know put it well when she said "Women take all kinds of precautions like not eating soft cheeses or raw fish when the chances of that causing a problem are so small. Why would I take the much bigger chance of giving another child a horrible disease like CF?"
If we had another child who did have CF, I can't imagine the guilt I would feel. Not only for bringing the child into the world knowing how much he would suffer, but also knowing I would be affecting Seamus' health as well. The recommendation is that people with CF should not be within 3 feet of each other because of cross contamination but obviously CF children in the same family can not adhere to that. Whenever one grew something in their lungs, they would be sure to give it to the other.
There is one way for two carrier parents to have a child and insure (at least 95%) that they will have not the disease, and after many years of deliberation, that is what we decided to do. It's called Pre-Genetic Diagnosis (PGD) which is used with in vitro fertilization. They can tell as early as 3 days whether an embroyo carries the genes for CF.
It's a very touchy subject in the CF community because people have many opinions about it. Some think we should leave it up to God who does or does not get the disease or they think a cure is going to be found soon, so if another child has it, they will be fine. Some people who have CF feel that if their parents had used PGD they would never have been born and maybe it makes them feel like the world is telling them they shouldn't exist.
I want Seamus to know that is not how we feel at all. We would never, ever change anything about you. You are a kind and compassionate little boy and we know part of that comes from your experiences with CF. We desperately hope for a cure, but with or without one, CF will always be a part of the wonderful person you are.
I hope you can understand why we made the choices we did for your baby brother. We wanted to protect both of you. You are going to be a fantastic big brother and he is going to love you so much, just like Mommy and Daddy.
In no way did I write this post in judgment of other CF parents who may have made a different decision than ours. There is no easy answer and I respect any parents who have to deal with these issues. I ask that you respect our decision as well.
Wednesday, December 22, 2010
Catching up
It's been a busy Fall and Winter at our house. The big news is I'm pregnant! We are expecting another son in March and we're all excited. I think Seamus was more excited earlier and just wishes it would be over already. When I ask him to come feel the baby kick, he rolls his eyes and says "Mommy, I don't need to feel the baby again." Mommy also wishes it would be over soon. This is hard work for a "mature" lady like me.
Seamus was sick the entire month of November. He started the month with an endoscopy because an x-ray showed a piece of his old g-j tube stuck in his stomach. They went in to remove it but then couldn't find it. However, the breathing tube used for anesthesia seemed to stir up gunk in his lungs because two days later he ended up in the ER with pneumonia. He stayed for a week and then went home on IV antibiotics for another two weeks. After that, he still wasn't better and has been on oral antibiotics hoping to finally kick his cough that he's had since July. He finishes on Christmas Day and hopefully he can get a Christmas miracle and have it be gone for good.
He's been enjoying school a lot this year. He's a big Kindergartner and is really learning a lot. He told me today he can't wait for Christmas break to be over so he can go back to school. We're having a very difficult time trying to find a school for him next year. His current school is just Pre-K and K. Our local elementary school has class sizes of 30-35 which would definitely not work for him because of all the germs.
He's still taking dance class, tap and ballet, and even though he's not the most coordinated, he still loves it. And of course, he still spends hours each day drawing and cutting his "paper dudes". I think art is going to be his thing.
Seamus is very excited about Christmas but I think he's catching on about Santa. He keeps talking about how the Santa he saw this year didn't look like the one from previous years. He's too smart for his own good. Yesterday, he ran around the house and collected all the tissue boxes and drew family portraits on all of them. Then he wrapped them up for Christmas presents and said "Now when they blow their nose, they can look at pictures of their family." He's very thoughtful.
Seamus was sick the entire month of November. He started the month with an endoscopy because an x-ray showed a piece of his old g-j tube stuck in his stomach. They went in to remove it but then couldn't find it. However, the breathing tube used for anesthesia seemed to stir up gunk in his lungs because two days later he ended up in the ER with pneumonia. He stayed for a week and then went home on IV antibiotics for another two weeks. After that, he still wasn't better and has been on oral antibiotics hoping to finally kick his cough that he's had since July. He finishes on Christmas Day and hopefully he can get a Christmas miracle and have it be gone for good.
He's been enjoying school a lot this year. He's a big Kindergartner and is really learning a lot. He told me today he can't wait for Christmas break to be over so he can go back to school. We're having a very difficult time trying to find a school for him next year. His current school is just Pre-K and K. Our local elementary school has class sizes of 30-35 which would definitely not work for him because of all the germs.
He's still taking dance class, tap and ballet, and even though he's not the most coordinated, he still loves it. And of course, he still spends hours each day drawing and cutting his "paper dudes". I think art is going to be his thing.
Seamus is very excited about Christmas but I think he's catching on about Santa. He keeps talking about how the Santa he saw this year didn't look like the one from previous years. He's too smart for his own good. Yesterday, he ran around the house and collected all the tissue boxes and drew family portraits on all of them. Then he wrapped them up for Christmas presents and said "Now when they blow their nose, they can look at pictures of their family." He's very thoughtful.
Monday, July 12, 2010
Not okay
I had a stomachache one day and I was complaining about it. I asked Seamus "How do you do this all the time? Does your stomach hurt everyday?"
"Yes"
"I'm sorry, baby"
"It's okay, Mommy"
But you know what, it's not okay.
It's not okay that just the thought of pooping can make him cry.
It's not okay that we're no longer surprised when he jumps up in the middle of dinner to go throw up and then comes back and finishes his meal like nothing happened.
It's not okay that some days he is so gassy and distended that he can't tolerate shaking in his vest because it hurts too much.
It's not okay that every day a four year old boy has to be tied to his feeding pump for 2 hours getting Miralax pumped through him in order to poop, along with Mucomist to make it less sticky, Erythmycin to improve motility, Prevacid for reflux, probiotics for bacterial overgrowth, swallowed Flovent for eosinophilic esphogitis, and Pentasa for colitis.
It's not okay that he gets humiliated when he has accidents, which are no fault of his own, because of all the medicine he gets pumped through his system.
It's definitely not okay that even with all the daily meds, he still gets blocked up and now needs a weekly heavy-duty four hour clean-out with Go-lytely which means every Sunday we can't leave the house because you never know when it will go into effect.
There is just nothing that's okay about what he has to go through.
-------------------------------------------------------------------------------------
He had CF clinic on Friday. Our regular doc, Dr P, is on maternity leave so Dr Preston Campbell, the medical director of the Cystic Fibrosis Foundation was filling in. He was really good with Seamus and talked with us for a long time about Seamus' GI issues. He told us he has never seen any other CF patient with such extreme GI issues. That was a shock because he has seen thousands of patients. At first, I thought, "Okay, we're not crazy. This is really serious" but then I thought "Oh shit, we're not crazy. This is really serious."
He didn't really like it that so far, the treatment has basically been just to keep increasing Seamus' meds and when that doesn't work, admit him for a longer clean-out than we can do at home. He didn't really have anything new to offer that could help Seamus currently but he does feel that there is hope. Some of the new drugs being developed work specifically on Seamus' type of gene mutation. There is also a new enzyme which should be approved soon that is the first one not made from pigs. Since Seamus' most severe food allergy is to pork, that's good news for him.
"Yes"
"I'm sorry, baby"
"It's okay, Mommy"
But you know what, it's not okay.
It's not okay that just the thought of pooping can make him cry.
It's not okay that we're no longer surprised when he jumps up in the middle of dinner to go throw up and then comes back and finishes his meal like nothing happened.
It's not okay that some days he is so gassy and distended that he can't tolerate shaking in his vest because it hurts too much.
It's not okay that every day a four year old boy has to be tied to his feeding pump for 2 hours getting Miralax pumped through him in order to poop, along with Mucomist to make it less sticky, Erythmycin to improve motility, Prevacid for reflux, probiotics for bacterial overgrowth, swallowed Flovent for eosinophilic esphogitis, and Pentasa for colitis.
It's not okay that he gets humiliated when he has accidents, which are no fault of his own, because of all the medicine he gets pumped through his system.
It's definitely not okay that even with all the daily meds, he still gets blocked up and now needs a weekly heavy-duty four hour clean-out with Go-lytely which means every Sunday we can't leave the house because you never know when it will go into effect.
There is just nothing that's okay about what he has to go through.
-------------------------------------------------------------------------------------
He had CF clinic on Friday. Our regular doc, Dr P, is on maternity leave so Dr Preston Campbell, the medical director of the Cystic Fibrosis Foundation was filling in. He was really good with Seamus and talked with us for a long time about Seamus' GI issues. He told us he has never seen any other CF patient with such extreme GI issues. That was a shock because he has seen thousands of patients. At first, I thought, "Okay, we're not crazy. This is really serious" but then I thought "Oh shit, we're not crazy. This is really serious."
He didn't really like it that so far, the treatment has basically been just to keep increasing Seamus' meds and when that doesn't work, admit him for a longer clean-out than we can do at home. He didn't really have anything new to offer that could help Seamus currently but he does feel that there is hope. Some of the new drugs being developed work specifically on Seamus' type of gene mutation. There is also a new enzyme which should be approved soon that is the first one not made from pigs. Since Seamus' most severe food allergy is to pork, that's good news for him.
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