A good friend of mine has a blog called, This Little Light. Today she chose to write about my family. You can find the post here: A Gift to the EB Community
January 20, 2013
January 19, 2013
Infection Control in the Laundry Room
It might have been just me but I always assumed clothes washed in hot water and detergent was enough to kill germs and bacteria. Well it turned out my assumption was wrong! Hot water and soap alone is not enough to kill germs and bacteria on clothing. Bleach on the other hand will but its not safe for clothes and cloth safe bleach is expensive especially when you do 14+ loads each week like I do. So I started looking in other things to add to the wash that aren't expensive and found three things: Peroxide, Vinegar and Baking Soda. I personally have not tried peroxide yet and have only used baking soda and vinegar. I also found how you separate clothing is also important. I use to throw like colors together in the wash and then towels and socks and undies together but when you think about what your most germest clothing is (socks and undies) you really don't those to be washed with the towels you dry yourself with AFTER you are already clean!??!?
So I came up with own laundry system! This is just what works for us and is just an example:
pinks/reds/oranges together with a 1/2 cup of baking soda
blue/purple/green together with a 1/2 cup of baking soda
browns/cream/yellow with a 1/2 cup of baking soda
jeans with a 1/2 cup of vinegar
whites with 1/2 cup baking soda
towels/sheets with a 1/2 cup baking soda
socks/undies with 1 cup vinegar
Joey's clothes/blankets/towels with 1 cup vinegar and I always wash his clothes alone so his germs don't spread to us and so other germs/bacteria don't spread to him.
I also do the socks/undies load LAST and when what I done I run a rinse cycle with 1/2 cup of bleach to kill any bacteria residual in the washing machine and wipe down the dryer with a Clorox wipe after the socks/undies load dries.
I don't have a specific day of the week for each load, just whenever the basket fills up!
Joey's occurrence of infection has really cut down since I started the new laundry system a few months ago.
You can also use a Chlorhexidine solution in the laundry as well. Just follow the instruction on the bottle. You can buy it in bulk cheaply at Tractor Supply ( or other farm and feed stores)
©Garrett's House 2021
December 18, 2012
December 18
To
some people today is just an ordinary day; a week before Christmas.
But for us it's the anniversary of the last time we held our baby boy,
Garrett James. Today it's been 8 years since he took is last breath; 8
years since ours lives were changed forever; 8 years since our hearts
were broken.
In the past 8 years I have learned:
- that time does NOT heal all wounds
- who my true family and friends are
-hearing of the death of another child is incredibly heartbreaking (needless to say this week in particular has been vary hard to comprehend)
Even after 8 years I still remember:
-the exact words from the doctor that he was gone
-the conversations I had with friends and family when I called to tell them the news
-planning his funeral
-all the people who came to his funeral
And ever since that day 8 years ago I /we
- still celebrate his birthday every year
-still wonder what life would be like had he lived
-tear up when I hear/see an emergency vehicle with their lights/sirens on
In the past 8 years I have learned:
- that time does NOT heal all wounds
- who my true family and friends are
-hearing of the death of another child is incredibly heartbreaking (needless to say this week in particular has been vary hard to comprehend)
Even after 8 years I still remember:
-the exact words from the doctor that he was gone
-the conversations I had with friends and family when I called to tell them the news
-planning his funeral
-all the people who came to his funeral
And ever since that day 8 years ago I /we
- still celebrate his birthday every year
-still wonder what life would be like had he lived
-tear up when I hear/see an emergency vehicle with their lights/sirens on
In loving memory:
Garrett James
December 6, 2004 ~ December 18, 2004
October 31, 2012
EB Awareness Week: Because of EB.....
Because of EB, I have a wonderful, thoughtful, pretty stubborn but independent, 10 yr old daughter
Because of EB, I have my own personal guardian angel
Because of EB, I have a loving, smart and giving 6 year old daughter
Because of EB, I have a happy, energetic, eager-to-learn almost 5 yr old daughter
And because of EB, I have a very hyper, always busy, happy, and not so little 19 month old son
Today is the final day of EB Awareness Week! If you have read each of my post, thank you! I hope you have learned something you didn't already know; I hope you still spread the word about EB! Awareness is the key!
Because of EB, I have my own personal guardian angel
Because of EB, I have a loving, smart and giving 6 year old daughter
Because of EB, I have a happy, energetic, eager-to-learn almost 5 yr old daughter
And because of EB, I have a very hyper, always busy, happy, and not so little 19 month old son
Today is the final day of EB Awareness Week! If you have read each of my post, thank you! I hope you have learned something you didn't already know; I hope you still spread the word about EB! Awareness is the key!
October 30, 2012
EB Awarenss Week: The sad part of my "job"
This post may be controversial to some people and it will revel my true feelings about certain things and that may cause some people to change they way they think about me. I don't normally take that kind of risk or expose myself in this way, but I think sometimes people (even myself) realize I am human too and have my own thoughts an feelings on things even if I don't express them often.
While I TRULY enjoy my job, my responsibility, to help other EB Families, there are many days when that "job" is frustrating, sad and heartbreaking.
I wish I could save every EB baby that I come to know; I wish the term 'EB Angel' was a thing of the past. I know I can't save everyone; but I often feel like I failed when one dies. Don't worry, I know I truly didn't fail that family; that child. But that is one of the frustrating parts; did I give the family enough info to make the best decisions they can? The other frustrating part, NOT giving my opinion on certain aspects of EB care. I use to be a 'my way is the only way' person but I have changed a lot in the past 10-15 yrs. When I am speaking to an new EB Family I WANT to TELL then what to do. But I have to keep reminding myself that I am just the provider of information; NOT the decision maker and its up to the parent to make the decisions on issues such as g-tubes, trachs, medications, etc... and some days that is very frustrating for me. But I haven't alienated too many people so I must be doing a good job of keeping my opinion out of it!
Visual diagnoses by doctors is something else that also frustrates me. To hear that a baby is born with super long fingernail and just a few blisters/patches of missing skin here and there and the doctors are quick to say, 'oh they are so mild, its simplex.' So the parents go home relieved and happy only to have their hearts broken weeks later when the biopsy comes back as junctional-hertliz.
Or for the family who's child is more with massive skin loss and the doctors assume the child has junctional only to be completely shocked when the biopsy comes back as simplex.
In my observation those who start out mild tend to have a severe/progressive form of EB and those that start out severe tend to have a milder form of EB that improves with age. Granted it doesn't happen that way all of the time, but it seems to happen that way most of the time.
And that is also something else I struggle with; not giving families my opinion on what type of EB I think their child has (unless they ask of course!)
The sad and heartbreaking parts:
Of course learning of a new EB Angel is always heartbreaking, but for me knowing what the parents are thinking, feeling, and how they are suffering. That is more heartbreaking for me. I know what its like to lose a child; I know that the day after feels like; planning and attending the funeral of your OWN child; knowing what the first holiday, birthday and angel day will feel like without them. I want to tell them it will get better; but that would be a lie. It doesn't get better; it just gets easier to live with. And I have over 100 friends/acquaintances that know exactly that; and the list continues to grow every year:/
I am so glad those 100+ people are in my life, but I wish it was because of a different reason. And I know they feel the same way:)
Even though some days are sad, I will continue in my quest: to use my knowledge and experience of EB to make the journey of a new EB family a little easier to travel.
While I TRULY enjoy my job, my responsibility, to help other EB Families, there are many days when that "job" is frustrating, sad and heartbreaking.
I wish I could save every EB baby that I come to know; I wish the term 'EB Angel' was a thing of the past. I know I can't save everyone; but I often feel like I failed when one dies. Don't worry, I know I truly didn't fail that family; that child. But that is one of the frustrating parts; did I give the family enough info to make the best decisions they can? The other frustrating part, NOT giving my opinion on certain aspects of EB care. I use to be a 'my way is the only way' person but I have changed a lot in the past 10-15 yrs. When I am speaking to an new EB Family I WANT to TELL then what to do. But I have to keep reminding myself that I am just the provider of information; NOT the decision maker and its up to the parent to make the decisions on issues such as g-tubes, trachs, medications, etc... and some days that is very frustrating for me. But I haven't alienated too many people so I must be doing a good job of keeping my opinion out of it!
Visual diagnoses by doctors is something else that also frustrates me. To hear that a baby is born with super long fingernail and just a few blisters/patches of missing skin here and there and the doctors are quick to say, 'oh they are so mild, its simplex.' So the parents go home relieved and happy only to have their hearts broken weeks later when the biopsy comes back as junctional-hertliz.
Or for the family who's child is more with massive skin loss and the doctors assume the child has junctional only to be completely shocked when the biopsy comes back as simplex.
In my observation those who start out mild tend to have a severe/progressive form of EB and those that start out severe tend to have a milder form of EB that improves with age. Granted it doesn't happen that way all of the time, but it seems to happen that way most of the time.
And that is also something else I struggle with; not giving families my opinion on what type of EB I think their child has (unless they ask of course!)
The sad and heartbreaking parts:
Of course learning of a new EB Angel is always heartbreaking, but for me knowing what the parents are thinking, feeling, and how they are suffering. That is more heartbreaking for me. I know what its like to lose a child; I know that the day after feels like; planning and attending the funeral of your OWN child; knowing what the first holiday, birthday and angel day will feel like without them. I want to tell them it will get better; but that would be a lie. It doesn't get better; it just gets easier to live with. And I have over 100 friends/acquaintances that know exactly that; and the list continues to grow every year:/
I am so glad those 100+ people are in my life, but I wish it was because of a different reason. And I know they feel the same way:)
Even though some days are sad, I will continue in my quest: to use my knowledge and experience of EB to make the journey of a new EB family a little easier to travel.
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