I thought this was pretty cool. Musician's from all over the world got together and played a song for peace.
To live!
Michelle summer 2009
Tuesday, April 28, 2009
Tuesday, April 21, 2009
A Week of Doctor Visits
Yesterday Zachary and I headed down to Denver for his monthly infusion of experimental medication. We dropped Josh (who was feeling dizzy) off at school and hit the highway. It was one of those days I dreaded at the infusion center. They were short nurses and we had to wait an hour before someone came to the clinic to give Zach his physical before the infusion could be started. Each visit has its own special protocol and yesterday, Zachary not only required a physical, but a pre and post blood test. To make everything a little more frustrating, there were not enough rooms available so we were in a room with three other women receiving infusions for various medical conditions. While Nikki, the nurse in charge of Zach's case, was trying to explain the next requirements for the study, the women (understandably) were chatting, making it difficult to concentrate on what Nikki was saying. By the time Zach had his second blood test and we left, we were both emotionally exhausted.
When I returned home I was really looking forward to just laying on the couch and taking a rest, but that was not to be. When I picked Joshua up from school, he was frustrated and frantic about a literacy project he was working on. I decided to call the teacher to find out what he was suppose to do for the project and when each section was due. As I talked to her, I found out that for the past week, all of Joshua's teachers have been concerned about his general confusion in their classrooms and although he was turning in homework, it was often the wrong assignment. I put on my to-do list, call the neurologist.
Giving up all hope of getting any rest, I went and worked out at the gym while waiting to pick up David from track practice, and then rushed home to go to the Columbine Concert that the TVHS band was performing that evening. It was an absolutely awesome concert and definitely the highlight of my week. However, before even going to the concert, I had to get Jeff out the door to the airport as he is spending the week working at Lawrence Livermore National Labs in Livermore, CA.
After falling in bed after all the kids were settled for the night, I was awakened every couple of hours by Rascal, our Black Lab. She has an ear infection and was in a lot of pain. Finally I remembered that I had some left over Remidryl (doggy ibuprofen)gave it to her, and was able to sleep from 2:30 AM until 6:00 AM. I woke Joshua and David up at 6:00 to get them out of the house at 7:00, but Joshua had trouble waking. When he did finally get up, I had to help him down the stairs because he felt so dizzy. By 8:00 AM I had called the vet, Josh's pediatrician and the neurologist. Rascal has a vet visit tomorrow at 9:00, Joshua has a neurological work-up at 4:20 tomorrow as well and Zachary has to go back to Denver on Thursday for a three-day blood test for the study.
This week is why it has been and will be difficult to ever have a career while my children are still young. There are stretches of weeks where everything goes smoothly and then these situations inevitably happen. What I find interesting is how quickly I usually forget weeks like this and then ask myself "why can't I ever get anything done?"
As my mother-in-law always reminds me, "this too will pass." So, I will turn to my favorite Bible verse to lift me up, James 1:2-4 and listen to one of my favorite songs "You Never Let Go" By Matt Redmond and go on, hopefully with a good attitude.
James 1:2-4:" Consider it all joy, my bretheren when you encounter various trials knowing that the testing of your faith produces endurance. And let endurance have its perfect result, that you may be perfect and complete, lacking in nothing."
When I returned home I was really looking forward to just laying on the couch and taking a rest, but that was not to be. When I picked Joshua up from school, he was frustrated and frantic about a literacy project he was working on. I decided to call the teacher to find out what he was suppose to do for the project and when each section was due. As I talked to her, I found out that for the past week, all of Joshua's teachers have been concerned about his general confusion in their classrooms and although he was turning in homework, it was often the wrong assignment. I put on my to-do list, call the neurologist.
Giving up all hope of getting any rest, I went and worked out at the gym while waiting to pick up David from track practice, and then rushed home to go to the Columbine Concert that the TVHS band was performing that evening. It was an absolutely awesome concert and definitely the highlight of my week. However, before even going to the concert, I had to get Jeff out the door to the airport as he is spending the week working at Lawrence Livermore National Labs in Livermore, CA.
After falling in bed after all the kids were settled for the night, I was awakened every couple of hours by Rascal, our Black Lab. She has an ear infection and was in a lot of pain. Finally I remembered that I had some left over Remidryl (doggy ibuprofen)gave it to her, and was able to sleep from 2:30 AM until 6:00 AM. I woke Joshua and David up at 6:00 to get them out of the house at 7:00, but Joshua had trouble waking. When he did finally get up, I had to help him down the stairs because he felt so dizzy. By 8:00 AM I had called the vet, Josh's pediatrician and the neurologist. Rascal has a vet visit tomorrow at 9:00, Joshua has a neurological work-up at 4:20 tomorrow as well and Zachary has to go back to Denver on Thursday for a three-day blood test for the study.
This week is why it has been and will be difficult to ever have a career while my children are still young. There are stretches of weeks where everything goes smoothly and then these situations inevitably happen. What I find interesting is how quickly I usually forget weeks like this and then ask myself "why can't I ever get anything done?"
As my mother-in-law always reminds me, "this too will pass." So, I will turn to my favorite Bible verse to lift me up, James 1:2-4 and listen to one of my favorite songs "You Never Let Go" By Matt Redmond and go on, hopefully with a good attitude.
James 1:2-4:" Consider it all joy, my bretheren when you encounter various trials knowing that the testing of your faith produces endurance. And let endurance have its perfect result, that you may be perfect and complete, lacking in nothing."
Wednesday, April 15, 2009
What Joshua Taught Us
I watch my 11 year old son swim with his age group in swimming and my heart swells until it feels like it will burst. The parents around me are reading, chatting or watching their own children practice. However, to me, watching Joshua swim and blend in with everyone else on the team is akin to being the mother of an Olympian swimmer watching her child compete with the best. You see, Joshua was born with a congenital abnormality in his brain.
As a school social worker in Illinois, I worked with children with disabilities. I never dreamed that any of my children would be affected. I had my Master's Degree in Social Work and my husband had his PhD in Electrical Engineering. I envisioned perfectly healthy children in the not too distant future. I was 27 and I couldn't wait to begin raising a family.
In 1992, I gave birth to my first, a wonderful little girl who was the spitting image of her Daddy. In 1994, my second child was born; a son. Blond haired, blue-eyed, he was the image of my side of the family. Then, in 1996, my third child was born. He had the physical features of his sister combined with the fair coloring of his brother. It was a happy, yet busy time. I was living my dream and cultivating my young children's minds by providing them with a variety of stimulating educational opportunities, play groups and even sports activities.
Joshua reached his initial developmental milestones, such as rolling over, sitting independently and babbling as quickly as my other two children. When he turned six months things began to change like a light snow builds into a blizzard. It started with an infection in Joshua's little toe on his right foot. We were told he had a little infection due to an ingrown toenail that would get better on antibiotics. He didn't get better. He started running fevers, he stopped developing language and even after fifteen months he was unable to walk.
After a year of agonizing over what was wrong with Joshua, through a series of medical tests we found that he had an arachnoid cyst in next to the right temporal lobe in his brain, as well as a problem with his immune system. Apparently, when he was in-utero, his arachnoid membranes (the lining of the brain that creates cerebral spinal fluid or CSF) split into two near his right temporal lobe and then filled up like a balloon with CSF fluid, creating pressure in his brain. At one point we were told he didn't have a right temporal lobe as the cyst compressed it!
Although family life had already become filled with tension, things became worse. Life for everybody in our family became an endless parade of doctor's appointments, hospitalizations and emergency room visits as Joshua developed seizures and sometimes after a seizure,temporary paralysis. My two older children had to grow up quickly. They were frequently dropped off with friends, family or just picked up from school to accompany us on our medical emergencies. Outside activities came to a standstill. Luckily our family pediatrician was a strong Christian and really helped us through the medical mazes and was an amazing support. However, our search for answers continued for four years and in the midst of this craziness, we had our fourth child, another son.
When my fourth child was born, I was pretty sure I would have a nervous breakdown. The pregnancy had been unplanned and I was scared. However, Zachary was an easygoing, flexible baby. He hung out at doctor's visits, occupational therapy, physical therapy and teacher visits. He and Joshua seemed to develop at the same rate. By the time Zachary was able to walk and talk, Joshua was reaching the same milestones and they developed a strong friendship. To this day they call each other "best buddy."
As Joshua grew older, the doctors were better able to diagnose him. We moved from California to Loveland, Colorado and The Children's Hospital in Denver had a neurosurgeon who was able to figure out the elusive problem that had interfered with all of Joshua's treatments. Dr. Handler identified that Joshua had hydrocephalus as well as an arachnoid cyst. He replaced the single shunt in Joshua's arachnoid cyst with a shunt with two ports (cysto-ventriculo-peritoneal shunt.) Finally, at four years of age, Joshua began to take off and develop both intellectually and physically.
Now, seven years later, I watch my son blend in with everyone else. What used to seem like a tragedy has turned into a blessing. My husband and I feel like, without us knowing, God had prepared us for Joshua. My years as a social worker enabled me to to advocate for my son, not only medically, but educationally as well. With the training and work experience I had received I was able to make my way through the mazes of doctors, therapists and teachers and keep sight of our ultimate end goal, to help Joshua live a quality life. Ironically, though arachnoid cysts are recognized as rare disorders, we have met families of at least three other children with arachnoid cysts and have been able to offer them our knowledge, experience and support.
The life I imagined at 27 is certainly not the life I have lived these past 17 years. However, our experiences have provided our family with a great appreciation for the little things in life. My husband and I actually smile when Joshua is arguing with his siblings, because he can. And in the end, we have something better than a perfect family, we have a family that, although we have our share of arguments, loves and appreciates each other. We know that in spite of bad things that happen to us in life we can get through anything together...as dealing with a disability has taught us.
As a school social worker in Illinois, I worked with children with disabilities. I never dreamed that any of my children would be affected. I had my Master's Degree in Social Work and my husband had his PhD in Electrical Engineering. I envisioned perfectly healthy children in the not too distant future. I was 27 and I couldn't wait to begin raising a family.
In 1992, I gave birth to my first, a wonderful little girl who was the spitting image of her Daddy. In 1994, my second child was born; a son. Blond haired, blue-eyed, he was the image of my side of the family. Then, in 1996, my third child was born. He had the physical features of his sister combined with the fair coloring of his brother. It was a happy, yet busy time. I was living my dream and cultivating my young children's minds by providing them with a variety of stimulating educational opportunities, play groups and even sports activities.
Joshua reached his initial developmental milestones, such as rolling over, sitting independently and babbling as quickly as my other two children. When he turned six months things began to change like a light snow builds into a blizzard. It started with an infection in Joshua's little toe on his right foot. We were told he had a little infection due to an ingrown toenail that would get better on antibiotics. He didn't get better. He started running fevers, he stopped developing language and even after fifteen months he was unable to walk.
After a year of agonizing over what was wrong with Joshua, through a series of medical tests we found that he had an arachnoid cyst in next to the right temporal lobe in his brain, as well as a problem with his immune system. Apparently, when he was in-utero, his arachnoid membranes (the lining of the brain that creates cerebral spinal fluid or CSF) split into two near his right temporal lobe and then filled up like a balloon with CSF fluid, creating pressure in his brain. At one point we were told he didn't have a right temporal lobe as the cyst compressed it!
Although family life had already become filled with tension, things became worse. Life for everybody in our family became an endless parade of doctor's appointments, hospitalizations and emergency room visits as Joshua developed seizures and sometimes after a seizure,temporary paralysis. My two older children had to grow up quickly. They were frequently dropped off with friends, family or just picked up from school to accompany us on our medical emergencies. Outside activities came to a standstill. Luckily our family pediatrician was a strong Christian and really helped us through the medical mazes and was an amazing support. However, our search for answers continued for four years and in the midst of this craziness, we had our fourth child, another son.
When my fourth child was born, I was pretty sure I would have a nervous breakdown. The pregnancy had been unplanned and I was scared. However, Zachary was an easygoing, flexible baby. He hung out at doctor's visits, occupational therapy, physical therapy and teacher visits. He and Joshua seemed to develop at the same rate. By the time Zachary was able to walk and talk, Joshua was reaching the same milestones and they developed a strong friendship. To this day they call each other "best buddy."
As Joshua grew older, the doctors were better able to diagnose him. We moved from California to Loveland, Colorado and The Children's Hospital in Denver had a neurosurgeon who was able to figure out the elusive problem that had interfered with all of Joshua's treatments. Dr. Handler identified that Joshua had hydrocephalus as well as an arachnoid cyst. He replaced the single shunt in Joshua's arachnoid cyst with a shunt with two ports (cysto-ventriculo-peritoneal shunt.) Finally, at four years of age, Joshua began to take off and develop both intellectually and physically.
Now, seven years later, I watch my son blend in with everyone else. What used to seem like a tragedy has turned into a blessing. My husband and I feel like, without us knowing, God had prepared us for Joshua. My years as a social worker enabled me to to advocate for my son, not only medically, but educationally as well. With the training and work experience I had received I was able to make my way through the mazes of doctors, therapists and teachers and keep sight of our ultimate end goal, to help Joshua live a quality life. Ironically, though arachnoid cysts are recognized as rare disorders, we have met families of at least three other children with arachnoid cysts and have been able to offer them our knowledge, experience and support.
The life I imagined at 27 is certainly not the life I have lived these past 17 years. However, our experiences have provided our family with a great appreciation for the little things in life. My husband and I actually smile when Joshua is arguing with his siblings, because he can. And in the end, we have something better than a perfect family, we have a family that, although we have our share of arguments, loves and appreciates each other. We know that in spite of bad things that happen to us in life we can get through anything together...as dealing with a disability has taught us.
Tuesday, April 14, 2009
Keeping a Medical Workbook
Having four children, two with significant medical issues, can be very overwhelming when trying to remember vaccines, surgeries, hospitalizations etc...I find it very helpful to keep a medical workbook for each child and bring it with me to all doctor visits.
I first began using medical workbooks when Joshua began having so many tests, hospitalizations and specialist visits, it was hard to keep track of all the information. I began a three inch binder and labeled the separators as Doctor Reports, Lab Tests, EEG, CT, MRI Reports, Surgeries and Hospitalizations, and Routine Care. After every significant visit, I would ask the office to send me the final report.
Now that I have a child with Eosinophilic Esophagitis (EE), I keep a workbook with labels that include foods tried, and foods to avoid. I also have a section labeled "studies" as he is participating in a study through 1st International Clinical Research Centers.
I keep a workbook for my other two children as well, even though they do not have any significant medical problems. It helps to know when that collar bone was broken, who took care of it and the hospital we went to get treated. With everything all in one place, it is a lot easier to address medical emergencies as they come up.
The final value of these workbooks is that you are aware of all that is being written an permanently filed about your child. You can be vigilant about making sure that there is a correct record of allergies and treatments.
I first began using medical workbooks when Joshua began having so many tests, hospitalizations and specialist visits, it was hard to keep track of all the information. I began a three inch binder and labeled the separators as Doctor Reports, Lab Tests, EEG, CT, MRI Reports, Surgeries and Hospitalizations, and Routine Care. After every significant visit, I would ask the office to send me the final report.
Now that I have a child with Eosinophilic Esophagitis (EE), I keep a workbook with labels that include foods tried, and foods to avoid. I also have a section labeled "studies" as he is participating in a study through 1st International Clinical Research Centers.
I keep a workbook for my other two children as well, even though they do not have any significant medical problems. It helps to know when that collar bone was broken, who took care of it and the hospital we went to get treated. With everything all in one place, it is a lot easier to address medical emergencies as they come up.
The final value of these workbooks is that you are aware of all that is being written an permanently filed about your child. You can be vigilant about making sure that there is a correct record of allergies and treatments.
Thursday, April 9, 2009
What To Do If The Ice Machine Is Broken
The automatic water on our refrigerator no longer works. It has not worked for awhile, but we seemed to muddle along for awhile expecting it to magically fix itself. However, we finally had to address the situation when we had company and no ice.
Finally, after weeks of whining about the ice maker, I got the brilliant idea to go buy some ice cube trays. My husband shut off the water as it was leaking and creating havoc not only with the ice, but the entire freezer. Once again we muddled along with three ice cube trays. Of course, our kids have grown up with everything automatic so once the ice cube trays were empty, they became confused and befuddled. I gently reminded them that they had to fill them up with water and put them in the freezer. We are still working on that.
I finally had the brilliant idea to fill up the ice machine with ice cubes from the trays each morning and evening. Voila! We finally had a solution that everybody could live with. The system actually works very well with relatively little effort.
This whole quandary probably seems very silly to the generations raised up through the seventies. However, in the past twenty years we have been making things so easy for ourselves and our children, we lose some common sense. The sad thing is that most people think that they cannot live without these modern conveniences and forget that there was a time when we did everything ourselves.
I see that all four of my children are missing the small tasks in life that used to be done by the children in the house. Since most things are done for them, they are constantly bored, as no one can play all the time. In a way, I welcome the ice machine breaking and I am not in any hurry to fix it. It is one small step for self-reliance. Now that my eyes have been opened by such a small thing I can maybe begin to address this whole boredom issue...laundry, mowing, weeding. The kids are in for a wonderful summer!
Finally, after weeks of whining about the ice maker, I got the brilliant idea to go buy some ice cube trays. My husband shut off the water as it was leaking and creating havoc not only with the ice, but the entire freezer. Once again we muddled along with three ice cube trays. Of course, our kids have grown up with everything automatic so once the ice cube trays were empty, they became confused and befuddled. I gently reminded them that they had to fill them up with water and put them in the freezer. We are still working on that.
I finally had the brilliant idea to fill up the ice machine with ice cubes from the trays each morning and evening. Voila! We finally had a solution that everybody could live with. The system actually works very well with relatively little effort.
This whole quandary probably seems very silly to the generations raised up through the seventies. However, in the past twenty years we have been making things so easy for ourselves and our children, we lose some common sense. The sad thing is that most people think that they cannot live without these modern conveniences and forget that there was a time when we did everything ourselves.
I see that all four of my children are missing the small tasks in life that used to be done by the children in the house. Since most things are done for them, they are constantly bored, as no one can play all the time. In a way, I welcome the ice machine breaking and I am not in any hurry to fix it. It is one small step for self-reliance. Now that my eyes have been opened by such a small thing I can maybe begin to address this whole boredom issue...laundry, mowing, weeding. The kids are in for a wonderful summer!
Saturday, April 4, 2009
A great article from the Michigan Daily about Gerald Ford
http://www.michigandaily.com/content/ford-left-lasting-impressions-colleagues-michigan
Palm Sunday Eve
This has been a very draining week, which is why I haven't posted in so long. Unfortunately, I developed strep throat. Being 45 years old, I thought that I just had a virus and waited five days before my 17 year old daughter coaxed me into going to the doctor by going with me. By the time I saw the doctor, my tonsils were so swollen that he prescribed liquid medicine (how embarrassing when I picked it up at the pharmacy.) Michelle, however, loved the role reversal and got a certain glee at seeing the shock on my face. Instead of pity, my whole family got to say "I told you so!" as they had been trying to get me to go in for days.
The whole experience was kind of like these rocks in the picture. They had cracks in them that filled with fluid, that then froze causing the rocks to break apart from the cliff and fall on the road. I had Jeff take this picture with his phone on the first day of my sore throat when we went for a walk. Little did I know then that they were a symbol of eventually happened to me at the end of the week!!
All week I kept thinking about those rocks and how they can also represent what happens when we don't fill in our lives with the Holy Spirit. We can think we are rock solid, that nothing can break us. However, when the little things keep being stored in the cracks, eventually everything can break and fall apart. However, keeping our eyes on God helps to fill those cracks and keep us strong.
Jeff and my experience in raising our four children has taught us that leaning on God to keep us whole has been an absolute necessity for both our marriage and our family. When one thing goes wrong with the children's health, or ours, it has the potential to pull our whole family apart. We couldn't begin to hold it together on our own.
On the eve of this Palm Sunday, I thought this was a good reflection. Throughout this Holy Week, so many events took place that could have pulled the disciples apart, but Jesus was the cement that kept them (and still us) together. Despite the challenges that we have in our lives that is the constant hope and promise that we can keep with us.
Have a blessed Palm Sunday!
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