Bennetts Big Cousin Jennie is in college and doing a paper and asked me to answer the following questions and I decided to post my answers on my blog to continue to make others aware of how our lives truly are behind closed doors. It was hard to type this up but I will do anything for cousin Jennie because one day she just MIGHT BE helping Bennett in school since she is studying that major. Wouldn't it be cool if Bennetts cousin Jennie was her aide in school?? Enjoy!
What special need does your child have?
Cystic Fibrosis
DIOS (Distal Intestinal Obstruction Syndrome)
Atrophic Kidney
Severe Asthma
Incontinence of the Intestinal and Rectal Muscles
How did your child obtain their special need (if known)?
Cystic Fibrosis is an inherited genetic lung disease.
DIOS is a condition that stems from the Cystic Fibrosis
Atrophic Kidney – Unknown
Severe Asthma – Family History
Incontinence of the Intestinal Rectal Muscles – Unknown
What types of treatments or medications must your child undergo daily? (Maybe, what does a typical day of treatment and medications look like?)
Our daily routine on a “healthy” day is as follows:
7am – Inhaled Medications:
Albuterol Nebulizer
Pulmicort Nebulizer
Mucomyst Nebulizer (winter months only)
Pulmozyme Nebulizer
Airway Clearance VIA the SmartVest:
Pressure of 50, 8 Hz for 15 minutes
Pressure of 50, 8 Hz for 15 minutes
Pressure of 50, 10 Hz for 15 minutes
(A total of 45 minutes)
Manual Chest Percussion Therapy VIA The Electro Flo 5000 – a total of 30 minutes
Oral Medications:
30Mg Of Allegra
15Mg Solutab Prevacid
3.5 Gram Benefiber Tablet
1000UI of Vitamin D (5 tablets)
500Mg of Calcium
500Mg Vitamin D
Cystic Fibrosis
DIOS (Distal Intestinal Obstruction Syndrome)
Atrophic Kidney
Severe Asthma
Incontinence of the Intestinal and Rectal Muscles
How did your child obtain their special need (if known)?
Cystic Fibrosis is an inherited genetic lung disease.
DIOS is a condition that stems from the Cystic Fibrosis
Atrophic Kidney – Unknown
Severe Asthma – Family History
Incontinence of the Intestinal Rectal Muscles – Unknown
What types of treatments or medications must your child undergo daily? (Maybe, what does a typical day of treatment and medications look like?)
Our daily routine on a “healthy” day is as follows:
7am – Inhaled Medications:
Albuterol Nebulizer
Pulmicort Nebulizer
Mucomyst Nebulizer (winter months only)
Pulmozyme Nebulizer
Airway Clearance VIA the SmartVest:
Pressure of 50, 8 Hz for 15 minutes
Pressure of 50, 8 Hz for 15 minutes
Pressure of 50, 10 Hz for 15 minutes
(A total of 45 minutes)
Manual Chest Percussion Therapy VIA The Electro Flo 5000 – a total of 30 minutes
Oral Medications:
30Mg Of Allegra
15Mg Solutab Prevacid
3.5 Gram Benefiber Tablet
1000UI of Vitamin D (5 tablets)
500Mg of Calcium
500Mg Vitamin D
20Mg Claritin
20Mg Zyrtec
5Mg Singulair
1 Tablespoon of Milk Of Magnesia
1 Tablespoon Fletchers Castoria
Multi-Vitamin
10 Billions Cells of Culturelle (Probiotic)
5Mg Singulair
1 Tablespoon of Milk Of Magnesia
1 Tablespoon Fletchers Castoria
Multi-Vitamin
10 Billions Cells of Culturelle (Probiotic)
Sinus Medicatons:
2 Sprays in each nostril of Flonase
2 Sprays in each nostril of Ocean
Other Medications:
17 Grams of Miralax
2 drops in each eye of Ketotefin
11am – Inhaled Medications:
Albuterol Nebulizer
Airway Clearance VIA the SmartVest:
Pressure of 50, 8 Hz for 15 minutes
Pressure of 50, 8 Hz for 15 minutes
Pressure of 50, 10 Hz for 15 minutes
(A total of 45 minutes)
3pm – Inhaled Medications:
Albuterol Nebulizer
Airway Clearance VIA the SmartVest:
Pressure of 50, 8 Hz for 15 minutes
Pressure of 50, 8 Hz for 15 minutes
Pressure of 50, 10 Hz for 15 minutes
(A total of 45 minutes)
Other 3pm medications:
17 Grams Of Miralax
1 Tablespoon of Milk Of Magnesia
1 Tablespoon of Fletchers Castoria
10 Billion cells of Culturelle (Probiotic)
7pm – Inhaled Medications:
Albuterol Nebulizer
Pulmicort Nebulizer
Mucomyst Nebulizer (winter months only)
Pulmozyme Nebulizer
Airway Clearance VIA the SmartVest:
Pressure of 50, 8 Hz for 15 minutes
Pressure of 50, 8 Hz for 15 minutes
Pressure of 50, 10 Hz for 15 minutes
(A total of 45 minutes)
Manual Chest Percussion Therapy VIA The Electro Flo 5000 – a total of 30 minutes
Oral Medications:
30Mg Of Allegra
15Mg Solutab Prevacid
3.5 Gram Benefiber Tablet
1000UI of Vitamin D (5 tablets)
500Mg of Calcium
500Mg of Vitamin D
20Mg Claritin
20Mg Zyrtec
5Mg Of Singulair
1 Tablespoon of Milk Of Magnesia
1 Tablespoon Of Fletchers Castoria
Multi-Vitamin
10 Billions Cells Of Culturelle
Sinus Medicatons:
2 sprays in each nostril of Flonase
2 sprays in each nostril of Ocean
Other Medications:
17 Grams of Miralax
2 drops in each eye of Ketotefin
When she is not feeling well we up the inhaled medications to every two hours and the airway clearance is upped to six times daily.
What preventative measures or precautions must be taken when leaving the home setting?
Each time we leave our home Bennett must wear a mask to cover her nose and mouth. If we are going into the doctor’s office or hospital setting she also wears gloves to prevent cross contamination of germs. We carry lots of tissues and hand sanitizer each time we go outside our home. If we are in a place where there is a lot of coughing or cold symptoms we keep our distance and do not allow them near her. We use a 4 foot rule. If you feel sick, showing symptoms of being sick or if you are a smoker and recently smoked a cigarette you must remain 4 foot away from her at all times. We avoid places that permit smoking.
How often do you visit the hospital or doctor because of your child's special need?
We visit the doctor’s office very frequently. She has between 10-15 appointments monthly that are just routine check-ups. We go more frequently when she is sick with a cold or showing any signs of not feeling well. For example: Since December 21, 2011 until January 11, 2012 we have gone to the doctor daily (Monday-Friday except the days they were closed due to the holiday) for them to listen to her lungs and monitor her.
Typically the check-ups are scheduled (when things are going well):
20Mg Zyrtec
5Mg Of Singulair
1 Tablespoon of Milk Of Magnesia
1 Tablespoon Of Fletchers Castoria
Multi-Vitamin
10 Billions Cells Of Culturelle
Sinus Medicatons:
2 sprays in each nostril of Flonase
2 sprays in each nostril of Ocean
Other Medications:
17 Grams of Miralax
2 drops in each eye of Ketotefin
When she is not feeling well we up the inhaled medications to every two hours and the airway clearance is upped to six times daily.
What preventative measures or precautions must be taken when leaving the home setting?
Each time we leave our home Bennett must wear a mask to cover her nose and mouth. If we are going into the doctor’s office or hospital setting she also wears gloves to prevent cross contamination of germs. We carry lots of tissues and hand sanitizer each time we go outside our home. If we are in a place where there is a lot of coughing or cold symptoms we keep our distance and do not allow them near her. We use a 4 foot rule. If you feel sick, showing symptoms of being sick or if you are a smoker and recently smoked a cigarette you must remain 4 foot away from her at all times. We avoid places that permit smoking.
How often do you visit the hospital or doctor because of your child's special need?
We visit the doctor’s office very frequently. She has between 10-15 appointments monthly that are just routine check-ups. We go more frequently when she is sick with a cold or showing any signs of not feeling well. For example: Since December 21, 2011 until January 11, 2012 we have gone to the doctor daily (Monday-Friday except the days they were closed due to the holiday) for them to listen to her lungs and monitor her.
Typically the check-ups are scheduled (when things are going well):
Cystic Fibrosis -- Every 4-6 Weeks
ENT -- Every 3 months
Allergist -- Monthly
GI -- Monthly
Nephrology -- Every 6 months
Those are the 5 main doctors that we see. We also see a phyiscal therapist, respiratory therapist, dietitian and a counselor
How does your child's special need affect their daily life? (Other than what has been previously mentioned)
Her daily life is affected in many ways. She is “tied” down for a total of 3 hours per day to do her airway clearance. Those three hours she could be playing and being a “normal” child. She misses a lot of cheerleading practices, competitions, soccer practices/games, etc due to not being able to participate because we are either at the doctors or she physically is unable to.
During the summer she is only permitted outdoors a total of an hour a day unless she is swimming, shaded very well or traveling in a car. She cannot be outdoors if the temperature is above 80 degrees.
She is unable to physically keep up with children her age when they are running and playing. She gets short of breath easily and begins to cough.
She often has a lot of pain from her kidney which also hinders what she is able to do physically.
Her diet is limited. She is no longer able to eat the foods that she loves the most. No red sauces whatsoever and her all time favorite food was pizza. She is not permitted to drink juice of any type except four ounces of apple juice daily. Only allowed one eight ounce glass of 2% (only) milk a day and the rest must be bottled water.
How does your child's special need affect your daily life?
Her special needs affect a lot in my daily life. My days are dedicated to assuring that she is as healthy as possible. I was working at one point until she had become very ill in June 2009. I had to step away from my job and be at home with her. Once I am finished with giving her all of her medications and treatments I am to worn out to do anything else. From the minute that I wake up to the minute that I go to sleep at night I am administering medications, doing airway clearance, calling insurance companies, calling pharmacies and making appointments for testing and the doctors. I get criticized often for certain choices that I make for my daughter.
How will your child's special needs affect them once they enter the school setting?
The affects that her special needs will have on her once she enters the school setting is that she will be missing a lot of days due to being hospitalized and attending frequent appointments. Also, she will have limitations when it comes to Gym and other physical activities as her Cystic Fibrosis progresses. She will still be able to attend a public school setting.
There will be several times where she will miss a class or two to do her medication and therapies at school. She will need to remember to go to the nurses office prior to lunch and take her medications.
Are you worried about your child entering the school setting? Why?
Yes, I am extremely worried about her entering the school setting because she is going to be exposed to many germs. Children will still attend school even though they are sick with colds and other illnesses. It will be hard to have each of the other student’s parents to take the extra precautions to ensure that she isn’t exposed to germs that can be avoided such as making the proper choices of keeping their child at home when they are sick. She understands to stay clear of children that are coughing and not feeling well. Also, I will be worrying whether or not the teacher and other school officials will follow the 504 plan an/or IEP that we will have in place for her.
Will an Individualized Education Program (IEP) need to be written to accommodate for your child?
Yes, there will be an IEP and/or a 504 Plan in place to make sure she is receiving the proper accommodations that she needs to ensure she is able to experience school to the fullest despite her special needs. Some of the things that will be in the plans will be allowing her to carry a water bottle in her backpack, extra trips to the bathroom, a few extra minutes to each her lunch, able to have excused gym days when she is physically unable to participate.
How does your child's special need affect their daily life? (Other than what has been previously mentioned)
Her daily life is affected in many ways. She is “tied” down for a total of 3 hours per day to do her airway clearance. Those three hours she could be playing and being a “normal” child. She misses a lot of cheerleading practices, competitions, soccer practices/games, etc due to not being able to participate because we are either at the doctors or she physically is unable to.
During the summer she is only permitted outdoors a total of an hour a day unless she is swimming, shaded very well or traveling in a car. She cannot be outdoors if the temperature is above 80 degrees.
She is unable to physically keep up with children her age when they are running and playing. She gets short of breath easily and begins to cough.
She often has a lot of pain from her kidney which also hinders what she is able to do physically.
Her diet is limited. She is no longer able to eat the foods that she loves the most. No red sauces whatsoever and her all time favorite food was pizza. She is not permitted to drink juice of any type except four ounces of apple juice daily. Only allowed one eight ounce glass of 2% (only) milk a day and the rest must be bottled water.
How does your child's special need affect your daily life?
Her special needs affect a lot in my daily life. My days are dedicated to assuring that she is as healthy as possible. I was working at one point until she had become very ill in June 2009. I had to step away from my job and be at home with her. Once I am finished with giving her all of her medications and treatments I am to worn out to do anything else. From the minute that I wake up to the minute that I go to sleep at night I am administering medications, doing airway clearance, calling insurance companies, calling pharmacies and making appointments for testing and the doctors. I get criticized often for certain choices that I make for my daughter.
How will your child's special needs affect them once they enter the school setting?
The affects that her special needs will have on her once she enters the school setting is that she will be missing a lot of days due to being hospitalized and attending frequent appointments. Also, she will have limitations when it comes to Gym and other physical activities as her Cystic Fibrosis progresses. She will still be able to attend a public school setting.
There will be several times where she will miss a class or two to do her medication and therapies at school. She will need to remember to go to the nurses office prior to lunch and take her medications.
Are you worried about your child entering the school setting? Why?
Yes, I am extremely worried about her entering the school setting because she is going to be exposed to many germs. Children will still attend school even though they are sick with colds and other illnesses. It will be hard to have each of the other student’s parents to take the extra precautions to ensure that she isn’t exposed to germs that can be avoided such as making the proper choices of keeping their child at home when they are sick. She understands to stay clear of children that are coughing and not feeling well. Also, I will be worrying whether or not the teacher and other school officials will follow the 504 plan an/or IEP that we will have in place for her.
Will an Individualized Education Program (IEP) need to be written to accommodate for your child?
Yes, there will be an IEP and/or a 504 Plan in place to make sure she is receiving the proper accommodations that she needs to ensure she is able to experience school to the fullest despite her special needs. Some of the things that will be in the plans will be allowing her to carry a water bottle in her backpack, extra trips to the bathroom, a few extra minutes to each her lunch, able to have excused gym days when she is physically unable to participate.
When I was in high school I had two sets of books. One at home and one in the class room, that way I wasn't carrying SEVERAL heavy books to/from my locker to each class! Just something I thought could help you in the future! :)
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