I usually try to stay on the positive side. As a matter of fact, when I was in the Master's program for Social Work, that was actually one of the criticism's that a professor gave me. She would approve of me today. I am just tired. What does a mother of four do when she is not feeling well, but can't take the time out to rest?
This week is a significant week for all of my children. David has a track meet tomorrow, Zachary begins a new season of Tae Kwon Do, and Joshua has so much make up homework due because he missed school all of last week. Wading through the mounds of sixth grade math, geology and English (poetry) just seems to take forever. I have to be very careful not to display any hesitancy with Joshua as he is very sensitive and will think that he is bugging me. Luckily, Zachary keeps himself busy writing in his blog, reading or emailing his friends on the computer.
As my sister-in-law Cindy says, "tomorrow is a brand new day, with no mistakes in it." Usually days like this I go to bed early and start fresh the next day. Although I don't have these days very often, I think that it is important to acknowledge them. Everybody has challenging days and when I actually put my day into perspective, I have a lot to be thankful for. So I will soldier on and look forward to tomorrow!
To live!
Michelle summer 2009
Monday, March 30, 2009
Sunday, March 29, 2009
To Swim or Not to Swim
Joshua is 12 years old now and has been swimming on the Loveland Swim Club since he was three years old. He has been regularly attending practice since fourth grade. However, middle school has been a huge change for him. In elementary school, he was in one classroom and pulled out for an hour a day for extra help in math, reading and writing. However, now he has to organize his books, keep his locker organized, attend six classes (with two classes switching off each day,) and make sure he has his homework. This is hard for any sixth grader, but it is especially challenging for Joshua, who still has some difficulty remembering more than three steps.
We have never had an issue with Joshua going to swim practice three times a week, for an hour. He enjoys swimming and is really adept. However, this year he has been balking. At the beginning of the year, he had some difficulty with his ventriculo-cysto-peritoneal shunt. It was leaking around the temporal site. When we went to see the neurosurgeon, we had good news and bad news. The good news was, the problem resolved itself without any surgical intervention. The bad news was that sometime between his last shunt surgery when he was four, and now, he had developed a Type 1 Chiari Malformation. Obviously, around that time, swimming was the first thing to cut down and he only went two days a week. However, we have been trying since that time to build up to three days a week again. It seems like some weeks we only go once because Joshua is so overwhelmed and tired when he gets home from school.
Most parents would advise me to pull Joshua out of swimming. But, I believe that the reason Joshua has done so well over the years is that I continually push him past his comfort zone. Most people who meet Joshua, have no idea that there is any medical issues or delays. He has gone from significant special education intervention in the public school to being completely integrated with the regular curriculum, performing at age level or above in all subjects but writing.
I was so proud of Joshua in January when he tried to go out for wrestling (with the neurologist and neurosurgeons permission, of course.) The practices were too intense for him, however, and he ended up with an increase in seizures. It was his decision to drop out after about a month. This brings me back to the question of swimming. He has had a hard time getting back into the mode of swimming. He took a break while wrestling, but I put him back in after he dropped out. I did this for two reasons. The first reason is that it is wonderful exercise for him. Second, it really helps him with cross coordination.
My dilemma is whether I should pull him out of swimming for the rest of the school year and let him just focus on school, or whether I should have him go two times a week. I can see the argument for both. It has been a difficult year for him, but also rewarding. His teachers can't say enough about how hard he works and how impressed they are that he never asks to get out of work, comes in over his lunch hour to finish projects and also attends after school tutoring sessions. Given this extra effort, he probably needs to just rest after school. However, I really believe that physical exercise in and of itself is a wonderful reliever of stress and it is a good habit to develop when you are young.
I will continue to puzzle over this quandary and write of my final decision in April. What to do, what to do...
For information on arachnoid cysts: http://www.ninds.nih.gov/disorders/arachnoid_cysts/arachnoid_cysts.htm
For information on Chiari Malformations: http://www.ninds.nih.gov/disorders/chiari/chiari.htm
For information on Seizure Disorders: http://www.epilepsyfoundation.org/about/types/
We have never had an issue with Joshua going to swim practice three times a week, for an hour. He enjoys swimming and is really adept. However, this year he has been balking. At the beginning of the year, he had some difficulty with his ventriculo-cysto-peritoneal shunt. It was leaking around the temporal site. When we went to see the neurosurgeon, we had good news and bad news. The good news was, the problem resolved itself without any surgical intervention. The bad news was that sometime between his last shunt surgery when he was four, and now, he had developed a Type 1 Chiari Malformation. Obviously, around that time, swimming was the first thing to cut down and he only went two days a week. However, we have been trying since that time to build up to three days a week again. It seems like some weeks we only go once because Joshua is so overwhelmed and tired when he gets home from school.
Most parents would advise me to pull Joshua out of swimming. But, I believe that the reason Joshua has done so well over the years is that I continually push him past his comfort zone. Most people who meet Joshua, have no idea that there is any medical issues or delays. He has gone from significant special education intervention in the public school to being completely integrated with the regular curriculum, performing at age level or above in all subjects but writing.
I was so proud of Joshua in January when he tried to go out for wrestling (with the neurologist and neurosurgeons permission, of course.) The practices were too intense for him, however, and he ended up with an increase in seizures. It was his decision to drop out after about a month. This brings me back to the question of swimming. He has had a hard time getting back into the mode of swimming. He took a break while wrestling, but I put him back in after he dropped out. I did this for two reasons. The first reason is that it is wonderful exercise for him. Second, it really helps him with cross coordination.
My dilemma is whether I should pull him out of swimming for the rest of the school year and let him just focus on school, or whether I should have him go two times a week. I can see the argument for both. It has been a difficult year for him, but also rewarding. His teachers can't say enough about how hard he works and how impressed they are that he never asks to get out of work, comes in over his lunch hour to finish projects and also attends after school tutoring sessions. Given this extra effort, he probably needs to just rest after school. However, I really believe that physical exercise in and of itself is a wonderful reliever of stress and it is a good habit to develop when you are young.
I will continue to puzzle over this quandary and write of my final decision in April. What to do, what to do...
For information on arachnoid cysts: http://www.ninds.nih.gov/disorders/arachnoid_cysts/arachnoid_cysts.htm
For information on Chiari Malformations: http://www.ninds.nih.gov/disorders/chiari/chiari.htm
For information on Seizure Disorders: http://www.epilepsyfoundation.org/about/types/
Saturday, March 28, 2009
Being a Crack-Filler
My mother-in-law, mother of seven, has an interesting description of herself. She calls herself a crack-filler. What she means by this is that when she was raising her children, she found it difficult to volunteer to lead any church committees or school committees because of all of the time commitments she she had raising her children. However, she really wanted to help out and volunteer. Her strategy was to contact the head of an event to find out what different activities had not already been covered and she would fill in the cracks. If someone needed cookies, she baked them, if an event needed help setting up or cleaning up, she was the one to call. She wanted to find a way to be helpful and involved in all areas of her family's lives and this is how she was able to successfully do that.
Although my mother-in-law did not have any children with special needs, her strategy has been very helpful to me. When my third child, Joshua was going through the diagnosis and initial treatment for seizures, and an arachnoid cyst, I was not able to focus on anyone but him. It was a very traumatic time for our whole family. My oldest two really suffered for this as they were just beginning in their school career.They would have really liked to have their mommy help out in the classroom, or even volunteer for parties. Unfortunately, with emergency trips to the hospital being a regular occurrence, I was not able to be a reliable source of help on a scheduled basis.
As Joshua grew older and we started to learn how to live around the doctors visits and hospitalizations, I began to try to be a "crack-filler." At first, I asked the elementary school teachers if I could grade papers at home. It didn't make a lot of sense to me to hire a babysitter for my two little ones, Joshua and Zachary, but I wanted my two older kids to know I was interested in their lives. When my second child, David, joined Cub Scouts, I was able to volunteer to be the assistant leader to his den. I made cookies and other food for Teacher Appreciations and I always tried to be the one to call people when that became necessary. By the time Joshua was eight years old, I actually began coaching gymnastics two days a week to participate with my daughter and also became more involved with Cub Scouts with my second, David.
It is so easy to get caught up and worn out by a child's health issues or developmental delays. It is extremely important to compartmentalize your various activities, even when you feel overwhelmed and especially if you have other children. Our family's experiences have taught us that a child can have an illness or disability, but it is only a part of who s/he is, not their whole existence. When another of your children or your spouse needs to have time and energy, sometimes the child with the disability or health problem has to take the back seat. The same holds true with just taking time to enjoy yourself. Being a "crack-filler" is a very valuable contribution you can make to help out organizations, your family and even yourself.
Although my mother-in-law did not have any children with special needs, her strategy has been very helpful to me. When my third child, Joshua was going through the diagnosis and initial treatment for seizures, and an arachnoid cyst, I was not able to focus on anyone but him. It was a very traumatic time for our whole family. My oldest two really suffered for this as they were just beginning in their school career.They would have really liked to have their mommy help out in the classroom, or even volunteer for parties. Unfortunately, with emergency trips to the hospital being a regular occurrence, I was not able to be a reliable source of help on a scheduled basis.
As Joshua grew older and we started to learn how to live around the doctors visits and hospitalizations, I began to try to be a "crack-filler." At first, I asked the elementary school teachers if I could grade papers at home. It didn't make a lot of sense to me to hire a babysitter for my two little ones, Joshua and Zachary, but I wanted my two older kids to know I was interested in their lives. When my second child, David, joined Cub Scouts, I was able to volunteer to be the assistant leader to his den. I made cookies and other food for Teacher Appreciations and I always tried to be the one to call people when that became necessary. By the time Joshua was eight years old, I actually began coaching gymnastics two days a week to participate with my daughter and also became more involved with Cub Scouts with my second, David.
It is so easy to get caught up and worn out by a child's health issues or developmental delays. It is extremely important to compartmentalize your various activities, even when you feel overwhelmed and especially if you have other children. Our family's experiences have taught us that a child can have an illness or disability, but it is only a part of who s/he is, not their whole existence. When another of your children or your spouse needs to have time and energy, sometimes the child with the disability or health problem has to take the back seat. The same holds true with just taking time to enjoy yourself. Being a "crack-filler" is a very valuable contribution you can make to help out organizations, your family and even yourself.
Friday, March 27, 2009
Eosinophilic Esophagitis
Aside from being hard to pronounce, Eosinophilic Esophagits is an elusive disorder that can mimic indigestion and reflux. Although some children have this disorder so severely that the only thing they can consume is a special formula, others have to listen to their siblings say that they are faking their stomach ache. This is where my ten year old Zachary lives. He always had difficulty eating, even as an infant and was actually diagnosed with reflux when he was weeks old. However, with Reglan and time, he outgrew his reflux and developed into an extremely picky eater. He had approximately ten foods that he survived on, along with liquid vitamins.
Our first indication that there might be a bigger problem for Zachary was when he had an anaphylactic reaction to a white chocolate macadamia nut cookie from Sam's Club on the way to kindergarten. His eyes swelled shut, his throat started closing and at the same time he was vomiting. Luckily, we were right by our pediatrician's office and I rushed him in, where they took him back and gave him epinephrine immediately. Within a short time period, he was reacting to all tree nuts and we now know he is allergic to at least one of the preservatives they use in baked goods.
A year later, Zachary's first grade teacher called from school to say that he was in the nurse's office because he had choked on a cracker. Choked on a cracker? I could see a toddler doing that, but not a six year old child. I was baffled, but tucked it away in the back of my mind until Zachary began having chronic stomach aches that would just have him curled up in his bed crying.
After several visits to Zachary's pediatrician over the stomach aches, our regular pediatrician, Dr. Bruce (who was just as baffled as I was) referred Zachary to a Gastroenterologist because he was clearly unhappy and losing weight. Zachary began seeing a Denver pediatric GI specialist, Dr. Rosensweig in October, 2005. Within two months, he was scheduled for an endoscopy and biopsy to try and determine what these mysterious stomach pains were all about.
The entire time that Zachary was being seen for his stomach, as a mother, I was being pummeled with concern and advice. Very well meaning friends inquired whether Zachary didn't like school, had separation anxiety or just needed to be treated for reflux. I doubted myself as to whether I was taking these stomach aches too seriously. However, about a week before Christmas in 2005, the biopsy results came back and Zachary was diagnosed with Eosinophilic Esophagitis (EE).
Some links that I found useful after being presented with this diagnosis are as follows:
http://www.medicinenet.com/eosinophilic_esophagitis/page2.htm
http://www.apfed.org/ee.htm
http://www.apfed.org/ee.htm
Support groups have been very helpful in helping us deal with this disorder. Here are some links to support groups:
http://njpaeos.org/ee.html
Our first indication that there might be a bigger problem for Zachary was when he had an anaphylactic reaction to a white chocolate macadamia nut cookie from Sam's Club on the way to kindergarten. His eyes swelled shut, his throat started closing and at the same time he was vomiting. Luckily, we were right by our pediatrician's office and I rushed him in, where they took him back and gave him epinephrine immediately. Within a short time period, he was reacting to all tree nuts and we now know he is allergic to at least one of the preservatives they use in baked goods.
A year later, Zachary's first grade teacher called from school to say that he was in the nurse's office because he had choked on a cracker. Choked on a cracker? I could see a toddler doing that, but not a six year old child. I was baffled, but tucked it away in the back of my mind until Zachary began having chronic stomach aches that would just have him curled up in his bed crying.
After several visits to Zachary's pediatrician over the stomach aches, our regular pediatrician, Dr. Bruce (who was just as baffled as I was) referred Zachary to a Gastroenterologist because he was clearly unhappy and losing weight. Zachary began seeing a Denver pediatric GI specialist, Dr. Rosensweig in October, 2005. Within two months, he was scheduled for an endoscopy and biopsy to try and determine what these mysterious stomach pains were all about.
The entire time that Zachary was being seen for his stomach, as a mother, I was being pummeled with concern and advice. Very well meaning friends inquired whether Zachary didn't like school, had separation anxiety or just needed to be treated for reflux. I doubted myself as to whether I was taking these stomach aches too seriously. However, about a week before Christmas in 2005, the biopsy results came back and Zachary was diagnosed with Eosinophilic Esophagitis (EE).
Some links that I found useful after being presented with this diagnosis are as follows:
http://www.medicinenet.com/eosinophilic_esophagitis/page2.htm
http://www.apfed.org/ee.htm
http://www.apfed.org/ee.htm
Support groups have been very helpful in helping us deal with this disorder. Here are some links to support groups:
http://njpaeos.org/ee.html
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