I've had some questions about how we all are adjusting to Harrison's Crohn's and medications.
Harrison was put on a high dosage of predisone in mid-October. It seems to be effective. His diarrhea has stopped and as far as I know, the bleeding has stopped too. The side-effect of prednisone (especially the HUGE dose he is on now) that we are experiencing now is complete, total emotional chaos. To give an example.....we can be driving down the road, listening to his choice of music, going to get his choice of lunch and all of the sudden - screaming and kicking and crazy comes from his little car seat. Once I can talk him down from the fit, he'll tell me that the sun was shining on him, or that he was wanting me to turn down a different street or something else completely crazy. I've even thought during some of his fits that he might hurt himself. I have to say that I think his body is adjusting well and I think he is getting better at controlling his outbursts for the most part. Today was an exception to that rule, but we are hoping for a better tomorrow.
We have started on the Imuran, and immuno-suppressing drug. I had such a hard time giving that to him the first few times, but I'm getting better. Right now I'm looking at it as the necessary evil to get off of the steroids. Probably this week we'll be able to start backing down off of the predisone. Once off of the steroids, we'll hopefully not have any more "flare-ups" for a while and we'll be labeled "in remission."
Once in remission it's my hope to try to avoid foods that we think might be triggering these flare-ups. I've done a lot of reading about Crohn's and talked to a few people that claim to be healed from this chronic disease. Apparently, coconut oil and milk are very healing to the intestines. I've tried sneaking coconut into several things we eat, and I don't think anyone knows. I'm learning new things (I learned today that coconut oil does not microwave well....and that was a fun mess to clean up) and learning about cooking with coconut flour. I'm very interested in holistic healing.
We traveled to Sapulpa to see a Christian healer who is able to look in your eyes and tell what is wrong with your body. I was skeptical. She looked at Harrison and the first thing she said was "My, his colon is sick." I had not even told her Harrison's name at that point! I was pretty impressed. She suggested some things that would help him and advised against giving him what the doctor had suggested to suppress his immune system.
I had a little soul-searching to do after I saw the healer. Did I follow her advice and try to heal Harrison with natural remedies, or did I follow the advice of the best pediatric gastro-interologist in the state? Because he was so sick, and so far his treatments have worked, I've decided to stick with the medical approach. That is not to say that after we are in remission for a while and he starts gaining weight and growing again, that we will not take another look at holistic healing. I HATE giving my child chemicals. I would rather believe that giving him a concentrate from okra would heal his body. But, he was so sick, and has stopped growing - and I think it's important for his body to heal as quickly as it can so the important work of growing his body can resume.
So, for now, we deal with the emotional outbursts and with the danger of him getting infections more than normal this winter - all in the hopes that his little body will grow. Will you pray with us that the medicine will work in Harrison's body, and that the possible side-effects will not be known to us?
We've had other things going on too. I'll post some pictures of Hamilton in the colorguard on Veteran's Day at his school. I was so proud of him! Henderson has a cold now, but is becoming more independant by the day.
Tuesday, November 16, 2010
Sunday, October 17, 2010
Diagnosis: Ugh...
So, we visited with our gastroenterologist (who is terrific, by the way) and we were given the diagnosis of Crohn's disease for Harrison. I was quite shocked, as the biopsies that he had seen earlier were not showing Crohn's. We also found out that he is very anemic and that before we can continue with treatment, we have to get the iron up. We can try to do it at home, but if we are unable to get the iron up, we will have to go to the hospital to do that. It may be challenging to do it at home as he is still losing blood.
Harrison will go for a TB test tomorrow afternoon to make sure he does not have TB. If we started him on immuno-suppressant drugs and he had TB, it could prove fatal. Then we will go later in the week for another blood workup to make sure his liver and kidneys can handle the new drug we'll be trying. As early as Wednesday we can start taking prednisone to heal his ulcers. This should aid in stopping the bleeding. He'll be on a pretty high dose to start, and then we can taper him off. He may be on the steroids for a few months, since this episode is particularly bad. After the blood work comes back, the Dr. will give us a fairly hefty dose of an immuno-suppressant drug and try to put Harrison into remission. I'm told that once he's been in remission for several months, we can try to back down that drug, but he will take an immuno-suppressant drug the rest of his life.
Those are the facts. Crohn's Disease. A chronic disease. Lots of medicine. Some analyzing diet & changing that where we can. Anemia.
Now for my feelings. I am scared. More scared of the drugs than of the disease itself. Scared of the impact this will have on my precious child. His growth is not stunted at this point, but most children with this disease are mal-nourished. I want to scream and run. And, yes, I do realize it could have been worse. If I have to hear that one more time I may go nuts! I do realize that it could have been worse. But, if your child is diagnosed with a chronic, serious disease - the last thing that you want to hear is "it could have been worse."
That being said, I do see God in this. I know that to see our Dr., you must be referred, and only the most serious cases get accepted - and then you may get an appt. for sometime in about 3 -6 months. Matt and I prayed and were given an appointment in 30 minutes. While Dr. Donovan did not seem to think Harrison was that ill (because he doesn't look or act sick) he took the time to listen to us and hear our concerns. He kept assuring us he would find nothing during the testing, but felt like because of the symptoms he had to proceed with the testing. He was as shocked as we were in finding he had Crohn's, but he spent an entire hour with us making sure we understood his beginning treatment plan & what our short term goals were. He told us that it is unheard of to have a diagnosis this quickly & that his growth is normal due to the quickness of testing and diagnosis (another God intervention I believe). His hope is that he'll continue with normal growth and nutrition in about a year.
While I'm fearful for my Harrison & I'd gladly take this suffering from him in a second, I know that God is working here - all things work together for His glory. I know that He is the Father of all fathers, the Parent of all parents, and that comforts me. I'm glad that he is allowing me to mother these 3 boys, but I know they are His children. I will do everything I can on earth to protect them, take care of them & love them, but I do rest easy knowing that God answers prayers & is right with us during these trying times.
Harrison will go for a TB test tomorrow afternoon to make sure he does not have TB. If we started him on immuno-suppressant drugs and he had TB, it could prove fatal. Then we will go later in the week for another blood workup to make sure his liver and kidneys can handle the new drug we'll be trying. As early as Wednesday we can start taking prednisone to heal his ulcers. This should aid in stopping the bleeding. He'll be on a pretty high dose to start, and then we can taper him off. He may be on the steroids for a few months, since this episode is particularly bad. After the blood work comes back, the Dr. will give us a fairly hefty dose of an immuno-suppressant drug and try to put Harrison into remission. I'm told that once he's been in remission for several months, we can try to back down that drug, but he will take an immuno-suppressant drug the rest of his life.
Those are the facts. Crohn's Disease. A chronic disease. Lots of medicine. Some analyzing diet & changing that where we can. Anemia.
Now for my feelings. I am scared. More scared of the drugs than of the disease itself. Scared of the impact this will have on my precious child. His growth is not stunted at this point, but most children with this disease are mal-nourished. I want to scream and run. And, yes, I do realize it could have been worse. If I have to hear that one more time I may go nuts! I do realize that it could have been worse. But, if your child is diagnosed with a chronic, serious disease - the last thing that you want to hear is "it could have been worse."
That being said, I do see God in this. I know that to see our Dr., you must be referred, and only the most serious cases get accepted - and then you may get an appt. for sometime in about 3 -6 months. Matt and I prayed and were given an appointment in 30 minutes. While Dr. Donovan did not seem to think Harrison was that ill (because he doesn't look or act sick) he took the time to listen to us and hear our concerns. He kept assuring us he would find nothing during the testing, but felt like because of the symptoms he had to proceed with the testing. He was as shocked as we were in finding he had Crohn's, but he spent an entire hour with us making sure we understood his beginning treatment plan & what our short term goals were. He told us that it is unheard of to have a diagnosis this quickly & that his growth is normal due to the quickness of testing and diagnosis (another God intervention I believe). His hope is that he'll continue with normal growth and nutrition in about a year.
While I'm fearful for my Harrison & I'd gladly take this suffering from him in a second, I know that God is working here - all things work together for His glory. I know that He is the Father of all fathers, the Parent of all parents, and that comforts me. I'm glad that he is allowing me to mother these 3 boys, but I know they are His children. I will do everything I can on earth to protect them, take care of them & love them, but I do rest easy knowing that God answers prayers & is right with us during these trying times.
Sunday, September 26, 2010
5 Years Ago....
5 years ago, I was in the hospital's "high risk" labor ward. I had been there for nearly two weeks. I had been on bed rest for a much longer time. I was going pre-eclamptic & knew I would give birth to a premature boy. The doctors were considering every day that he was in the womb a victory.
I HATED being there. I resented being there. I had a two year old and a husband I missed dearly. I could hardly see what a blessing it was to be there, and it was a blessing. What a blessing to have the medical facility and staff to make sure that my Harrison would be born as healthy as possible, and that I would not die in the process. The staff was wonderful, and my OB would actually dance hip-hop style to get me to smile. I was not a very good patient.
In a few days Harrison will turn 5. I always look back on that day and thank God I was in that hospital. I had been fine earlier in the day, but had developed a pretty bad headache. Matt and Hamilton came to visit that evening, and I tried to shake the headache. After they left, I was having blinding pain. I called the nurse to see if I could get some Tylenol and go to sleep for the night. She came in, took my vitals and immediately ran to get the OB that was on call. I was getting ready to have a stroke.
They induced labor, lowered my blood pressure & gave me an epidural (I didn't have one with my first born and I "heart" epidurals.) I was scared that I was going to have this baby at 34 weeks instead of the targeted 36. They told me he would probably survive and that "probably" scared the hell out of me! (More blood pressure medication, please!) Soon I delivered my 7lb. 4oz. baby boy. He was not breathing, and they whisked him of to the NICU nursery.
It was about an hour after delivery when I was able to see him and I was not ready for the sight. It was sobering. He was struggling to breath and had tubes and IV's everywhere. I was not able to stay long as I was still very sick & my blood pressure was not yet under control. It was one of the hardest moments of my life.
He was in the NICU for over two weeks, steadily improving every day. I sat in his little cubicle, stroking his hand and singing and talking to him. The nurses loved how he responded to my voice & I'll have to say, I did too. It was so hard. One day would be a good day, then I'd come in a few hours later and he would have had a major setback. It was the proverbial "one step forward, two steps back." About a week after he was born, I finally got to hold my Harrison. I can't even describe it. It was heaven. He soon was able to come home - after what seemed an eternity in the NICU.
He's had a few issues with asthma. He seems to have allergy or virus-induced asthma. When he's sick, we do breathing treatments to help him breathe better, but he's not officially asthmatic. We think the current digestive difficulties may be due to his prematurity, and we'll know more about that after his tests this week.
I'm scared of the tests this week. I'm sad that he'll have more poking and prodding going on - especially on his actual birthday, but I'm also aware of the miracle that he is and how he would not have survived (and I may not have either) without the wonderful care of the doctors & nurses we received early in his life. I'm going to have faith in my God, that he'll be there with my Harrison & He'll lead us to an answer and solution to Harrison's sickness through the care of these doctors and nurses.
I love you Harrison. Hessie. Hess. H2. Crankie Frankie. Happy Hess. Professor H. My 2nd little Miracle. I love you.
I HATED being there. I resented being there. I had a two year old and a husband I missed dearly. I could hardly see what a blessing it was to be there, and it was a blessing. What a blessing to have the medical facility and staff to make sure that my Harrison would be born as healthy as possible, and that I would not die in the process. The staff was wonderful, and my OB would actually dance hip-hop style to get me to smile. I was not a very good patient.
In a few days Harrison will turn 5. I always look back on that day and thank God I was in that hospital. I had been fine earlier in the day, but had developed a pretty bad headache. Matt and Hamilton came to visit that evening, and I tried to shake the headache. After they left, I was having blinding pain. I called the nurse to see if I could get some Tylenol and go to sleep for the night. She came in, took my vitals and immediately ran to get the OB that was on call. I was getting ready to have a stroke.
They induced labor, lowered my blood pressure & gave me an epidural (I didn't have one with my first born and I "heart" epidurals.) I was scared that I was going to have this baby at 34 weeks instead of the targeted 36. They told me he would probably survive and that "probably" scared the hell out of me! (More blood pressure medication, please!) Soon I delivered my 7lb. 4oz. baby boy. He was not breathing, and they whisked him of to the NICU nursery.
It was about an hour after delivery when I was able to see him and I was not ready for the sight. It was sobering. He was struggling to breath and had tubes and IV's everywhere. I was not able to stay long as I was still very sick & my blood pressure was not yet under control. It was one of the hardest moments of my life.
He was in the NICU for over two weeks, steadily improving every day. I sat in his little cubicle, stroking his hand and singing and talking to him. The nurses loved how he responded to my voice & I'll have to say, I did too. It was so hard. One day would be a good day, then I'd come in a few hours later and he would have had a major setback. It was the proverbial "one step forward, two steps back." About a week after he was born, I finally got to hold my Harrison. I can't even describe it. It was heaven. He soon was able to come home - after what seemed an eternity in the NICU.
He's had a few issues with asthma. He seems to have allergy or virus-induced asthma. When he's sick, we do breathing treatments to help him breathe better, but he's not officially asthmatic. We think the current digestive difficulties may be due to his prematurity, and we'll know more about that after his tests this week.
I'm scared of the tests this week. I'm sad that he'll have more poking and prodding going on - especially on his actual birthday, but I'm also aware of the miracle that he is and how he would not have survived (and I may not have either) without the wonderful care of the doctors & nurses we received early in his life. I'm going to have faith in my God, that he'll be there with my Harrison & He'll lead us to an answer and solution to Harrison's sickness through the care of these doctors and nurses.
I love you Harrison. Hessie. Hess. H2. Crankie Frankie. Happy Hess. Professor H. My 2nd little Miracle. I love you.
Friday, September 24, 2010
Donuts
Today, instead of having my normally scheduled protein & fruit for breakfast, I think I'll walk on the wild side and eat what my kids are having - donut holes! Every payday we drive thu the donut shop near our house & get everyone their own little bag. It's a big deal in this house (at least to the kids) and I feel like experiencing it.....I can't wait for Matt to walk through the door with our little bags! This weekend, I hope you are able to experience the world around you as a child would!
Wednesday, September 22, 2010
Just a Smidge
So, for the past 4 months we've been really overcome with poop in this house! Harrison, our middle child, has been having lots and lots of it. Tons. Literally. There's something going on in there, we just don't know what it is. We've been to countless Dr.'s appointments and done countless tests. We are preparing for a colonoscopy and EGD on his birthday next week. We are tired of this poop - and none more tired than Harrison!
We went yesterday for a blood draw to find out if he has Celiac Disease and also to mark how anemic he is now. I didn't sleep the night before. With any other child, I probably would have snoozed until the alarm went off, but not with Harrison. He's....well....spirited. Yes, spirited. That's what we'll call it. And loud. Very loud. The boy's got a good set of lungs on him!
Needless to say, I didn't tell the poor little guy we were going to the doctor until we were en route. I let him know we were going to see the gastroenterologist. He immediately asked if he'd have to get "poked" (that's what the child psychologists say we should call a shot these days...it sounds less threatening, but hurts the same....whatever.....). I answered that he would be getting a poke, and then he gave his lungs a good exercise. He had settled down by the time we got to the doctor, and did pretty darn well until the lab tech called his name.
We entered the lab room and he asked if it was going to hurt. The lab tech, who seemed about 15 years old, answered, "Uh, yeah....but not bad." (Thanks, Cyndi, lab tech girl. Really appreciate that.) He began to wail. I talked to him and told him it would hurt less if he was still like a statue, and it would only pinch for one second. Then we started timing seconds. He thought it might be bearable. The poke came and he yelped for a minute until it was all done, then picked his sticker out and we were on our way!
On the way out, we sat on a bench to catch our breaths and so I could give him a big hug. I told him that he was very brave. He furrowed his little brow and said, "No, not really mom. But maybe just a smidge." What a trooper. I've laughed about that ever since. I love his sincere honesty.
I'm praying we will find out what is bothering his little tummy with the upcoming tests. I'm scared, and I know he will be too, but maybe I can be very brave.....or even just a smidge.
We went yesterday for a blood draw to find out if he has Celiac Disease and also to mark how anemic he is now. I didn't sleep the night before. With any other child, I probably would have snoozed until the alarm went off, but not with Harrison. He's....well....spirited. Yes, spirited. That's what we'll call it. And loud. Very loud. The boy's got a good set of lungs on him!
Needless to say, I didn't tell the poor little guy we were going to the doctor until we were en route. I let him know we were going to see the gastroenterologist. He immediately asked if he'd have to get "poked" (that's what the child psychologists say we should call a shot these days...it sounds less threatening, but hurts the same....whatever.....). I answered that he would be getting a poke, and then he gave his lungs a good exercise. He had settled down by the time we got to the doctor, and did pretty darn well until the lab tech called his name.
We entered the lab room and he asked if it was going to hurt. The lab tech, who seemed about 15 years old, answered, "Uh, yeah....but not bad." (Thanks, Cyndi, lab tech girl. Really appreciate that.) He began to wail. I talked to him and told him it would hurt less if he was still like a statue, and it would only pinch for one second. Then we started timing seconds. He thought it might be bearable. The poke came and he yelped for a minute until it was all done, then picked his sticker out and we were on our way!
On the way out, we sat on a bench to catch our breaths and so I could give him a big hug. I told him that he was very brave. He furrowed his little brow and said, "No, not really mom. But maybe just a smidge." What a trooper. I've laughed about that ever since. I love his sincere honesty.
I'm praying we will find out what is bothering his little tummy with the upcoming tests. I'm scared, and I know he will be too, but maybe I can be very brave.....or even just a smidge.
Friday, September 17, 2010
My Mom, My Friend
I visited with my mom today, as I do almost every day. She was having a hard day today. Her mom passed away in June. I don't know how to help her, and I dearly wish I could.
Mom's family has always been matriarchal. This stems back to her great-grandmother, and continues today with my sisters and I. It's just the way the women in this family are. My sisters and I are the same, and if I had a daughter, it's probably how she would be too. Along with being strong women, the women in our family are also best friends - so when my grandmother passed away, it left quite a hole.
I struggle with this because mom misses her best friend. And, I naturally want to help since seeing her hurt is painful for me. I would love to fill that hole, but I simply cannot. I don't have the history, I don't know about the "good ol' days", and I'm in a different place in life. Where she's quilting and camping with dad - I'm still potty training and packing school lunches.
I do see where she's coming from though. I look at her loss & put myself in her place. It would be like me losing her, and that thought is unbearable. I have great empathy for her.
I'm unsure of what to do. I suggested some groups at church that have women her age in them, but I think she is scared to start something new. I know that time will help. For now, I'll just continue listening and be her daughter & friend. I just wish I could take her pain away.
Mom's family has always been matriarchal. This stems back to her great-grandmother, and continues today with my sisters and I. It's just the way the women in this family are. My sisters and I are the same, and if I had a daughter, it's probably how she would be too. Along with being strong women, the women in our family are also best friends - so when my grandmother passed away, it left quite a hole.
I struggle with this because mom misses her best friend. And, I naturally want to help since seeing her hurt is painful for me. I would love to fill that hole, but I simply cannot. I don't have the history, I don't know about the "good ol' days", and I'm in a different place in life. Where she's quilting and camping with dad - I'm still potty training and packing school lunches.
I do see where she's coming from though. I look at her loss & put myself in her place. It would be like me losing her, and that thought is unbearable. I have great empathy for her.
I'm unsure of what to do. I suggested some groups at church that have women her age in them, but I think she is scared to start something new. I know that time will help. For now, I'll just continue listening and be her daughter & friend. I just wish I could take her pain away.
Wednesday, September 15, 2010
Sweet Spot
With fall comes a new bible study and this season we are studying "Cure to the Common Life" by Max Lucado. I think it's going to be a great study.
The first chapter talked about finding that "sweet spot" in your life. The spot where you are gifted, where God intends for you to be, where you are comfortable and effective. Some of us are so busy fitting into so many roles, I don't think we really know or remember what our sweet spots are. I know this is true for me.
He talks about how a room full of preschoolers can be a noisy, chaotic mess. But, to God, it is a masterpiece in the making. Every child is working in his/her sweet spot. Some might be painting, some may be building, some may be nurturing a baby, some may be tapping rhythms on a drum and some may be "acting out" to gain attention. Every preschooler in the room is performing in their sweet spot & pleasing to God - even the one "acting out."
I see this daily with my little guys. I watch as Hamilton problem solves with his intricate buildings and know that one of his gifts is problem solving and thinking outside of the box. I know that Harrison is a "feeler" and is very aware of the emotions and happenings of the world around him. Even though Harrison is vocal (wow - does that boy's voice carry!) and is viewed by some to be "too loud", I know that what now might seem "acting out" could be a valuable trait for a leader in the adult world. And I know that Henderson is an entertainer. He loves making people smile and talking with people - he's never met a stranger.
It occurred to me while reading this bible study that while I relate almost everything to my children, I am God's child. I sometimes forget that. I imagined him looking over me in several things I'm trying (leading a bible study, cooking more elaborate meals, sewing more...) . It gave me chills to think of my Father God looking at me through the parent eyes I see my children through.
He gave me the gift of music. It's a God-given talent I have. I've put it away for the past 10 years. In fact, while it used to be my only identity, now most of the people in my life have no idea I possess this gift. I think it's time I stop hiding this gift or "sweet spot" and start sharing it. I'm looking forward to digging into this bible study and discovering my other "sweet spots" and maybe help someone else find theirs too.
The first chapter talked about finding that "sweet spot" in your life. The spot where you are gifted, where God intends for you to be, where you are comfortable and effective. Some of us are so busy fitting into so many roles, I don't think we really know or remember what our sweet spots are. I know this is true for me.
He talks about how a room full of preschoolers can be a noisy, chaotic mess. But, to God, it is a masterpiece in the making. Every child is working in his/her sweet spot. Some might be painting, some may be building, some may be nurturing a baby, some may be tapping rhythms on a drum and some may be "acting out" to gain attention. Every preschooler in the room is performing in their sweet spot & pleasing to God - even the one "acting out."
I see this daily with my little guys. I watch as Hamilton problem solves with his intricate buildings and know that one of his gifts is problem solving and thinking outside of the box. I know that Harrison is a "feeler" and is very aware of the emotions and happenings of the world around him. Even though Harrison is vocal (wow - does that boy's voice carry!) and is viewed by some to be "too loud", I know that what now might seem "acting out" could be a valuable trait for a leader in the adult world. And I know that Henderson is an entertainer. He loves making people smile and talking with people - he's never met a stranger.
It occurred to me while reading this bible study that while I relate almost everything to my children, I am God's child. I sometimes forget that. I imagined him looking over me in several things I'm trying (leading a bible study, cooking more elaborate meals, sewing more...) . It gave me chills to think of my Father God looking at me through the parent eyes I see my children through.
He gave me the gift of music. It's a God-given talent I have. I've put it away for the past 10 years. In fact, while it used to be my only identity, now most of the people in my life have no idea I possess this gift. I think it's time I stop hiding this gift or "sweet spot" and start sharing it. I'm looking forward to digging into this bible study and discovering my other "sweet spots" and maybe help someone else find theirs too.
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