Rachael Anilyse

Check out this site I stumbled upon tonight.  I didn't know her personally but remember her mom from the EB groups many years ago.

EB Info for Hospital

This can be printed out on colored paper and hung above your child's bed or on the door to remind the medical staff to enter with care.

STOP!!! 

PLEASE READ BEFORE TOUCHING ME!!

I have Epidermolysis Bullosa.  It is a connective tissue disorder that causes fragile skin, internally and externally.

Here are the ways you can SAFELY care for me

1.  If you have not worked with an EB patient before, please ask my parents how to care for me,

2. I CAN NOT have ANY tape, even paper or hypoallergenic tape used on my skin.  Mepitac tape is the ONLY safe tape that can be used on my skin.

3.  A Blood Pressure Cuff MUST be used over clothing or bandages, otherwise, the pressure will rip my skin

4.  When taking blood, the tourniquets MUST be placed over clothing or bandages because the pressure will rip my skin.  Blood draws may be difficult and can only be taken by an EXPERIENCED NICU nurse or while using IV radiology to find the best vein and avoid multiple sticks.   Do not rub the skin with alcohol wipes.  Gently dab the skin with an alcohol pad.  

5. DO NOT slide me during bed transfers.  Lift me by rolling me from side to side into your arms or let my parents show you how to move me.

6. For diaper changes, it usually takes two people.  DO NOT grab my feet or ankles.  Instead, one person should lift me with one arm under the back of my knees, and the other should change the diaper.  DO NOT rub the skin with wipes.  Use warm water to clean the area and gently pat dry. 

7. Coat exam gloves and any tubing that comes into contact with the skin, externally and internally with a non-petroleum-based lubricant.  

8.  Temperatures CAN NOT be taken rectally or in the ear.  Under the arm is the safest method, using a non-petroleum-based lubricant.  Infrared Thermometers can also be used, but are not always accurate in EB patients due to temperature regulation issues. 

9. PLEASE USE common sense and ask questions if you are unsure about my care.  

Created by ©Garrett's House http://http://ingarrettsmemory.blogspot.com/

EB in the News

 

S. Ind. 8-month-old continues to fight rare skin disease with help from community.  You can read about baby Brody here

EB in the News

A very interesting article about the causes of pain 

in those with severe EB.

Scientists Discover Cause Of Severe Pain Experienced By Patients With Epidermolysis Bullosa (EB)

December 6, 2011- 7 years later

Garrett would have been 7 years old on December 6th.  VERY hard to believe its been 7 years already.  Some days it still feels like a life time ago and other days like it just happened last week.   For those new to my blog you can ready Garrett's Story and how we typically celebrate his birthday here.

This year the 6th was a Tuesday so Joe had to work and the girls had school, so it was pretty much a normal day till everyone got home.  We had our usual Spaghetti dinner for dinner and we usually have cheesecake for dessert but the store was out of Jello No-Bake Cheesecake mix and I was NOT about to try and make one from scratch for the first time, we had a pre-made Coconut Cream Pie instead:)  It was just as yummy!  

Due to lack of a lot of time after dinner and before bed time, we opted to downsize this year in terms of a Gingerbread House... to Gingerbread people!

here's Joey checking out the action munching in crackers

afterwards the kids opening a present

 (Grace fell at the park earlier in the day and landed on her face and scrapped it up pretty good:(

 oh! presents!!

Then after they went to bed, I decorated Garrett's Christmas tree:

This year was kinda of hard...not so much that is been 7 years...but that fact we now have the same # of people in the family who remember Garrett and 3 who never met him and find it difficult to understand what happened to him, where he is at and why we still celebrate his birthday each year.   Summer and Grace weren't as excited about it as Sami was and I know that is part of the age and the fact they really don't understand what happened.  I am hoping it gets easier as time goes on.  Its hard to want to keep our yearly tradition when not everyone is excited about it as I am.

I used this song a couple of years ago but feel that is it fitting for this year as well since it makes reference to seven years going by so fast.

"Wake Me Up When September Ends" - By Green Day

Summer has come and passed
The innocent can never last
wake me up when September ends

like my father's come to pass
seven years has gone so fast
wake me up when September ends

here comes the rain again
falling from the stars
drenched in my pain again
becoming who we are

as my memory rests
but never forgets what I lost
wake me up when September ends

summer has come and passed
the innocent can never last
wake me up when September ends

ring out the bells again
like we did when spring began
wake me up when September ends

here comes the rain again
falling from the stars
drenched in my pain again
becoming who we are

as my memory rests
but never forgets what I lost
wake me up when September ends

Summer has come and passed
The innocent can never last
wake me up when September ends

like my father's come to pass
twenty years has gone so fast
wake me up when September ends
wake me up when September ends
wake me up when September ends