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Sunday, April 15, 2012

All about Joey

Last week Joey turned 13 months old!  So I thought i'd share about what he has been up to!

he prefers to eat with a fork or spoon vs his hands.  But with only4 teeth he is limited to what he can eat with a fork and spoon!  Neither pick up goldfish crackers very well!

he has about given up naps:(  he is so not a sleeper.  Sometimes he'll sleep from 11pm-6 or 7am, but then he is DONE!  Other times he is up every hours all.night.long.  When he does nap I am VERY lucky if he sleeps 30 minutes at a time!!

he can say mama, dada, all done, yum, baba, 
hi and uck (duck)

he can wave bye bye when someone says bye bye, he can shake his head no (he loves that one) he can get into the crawling position but has only crawled a few inches once.  He will stand with help and will walk around furniture and walk super fast while holding ours hands, but can not balance on his own.  He can not pull himself up yet.  He loves ANYTHING that opens and closes and will sit there for a long time and open and close what ever toy he has!  He prefers a book over most toys too.  

as long as we use the coconut oil and probotics his skin is doing really good! (knock on wood)  see this post if you have no idea what I am talking about.


anything sweet (yup another one w/ my sweet tooth!)

Gracie's Little Mermaid cups

a water bottle with a top he can take off and put on

going outside in his wagon or swing but that makes his already severe allergies much worse:(

Favorite parent: 

Favorite Sister

here are some pictures of him making a mess 
enjoying some yogurt!

Sunday, April 8, 2012

And the band played on....

Yesterday the EB community suffered another loss.  2 days shy of 8 months old, little Quinn lost her battle to junctional EB after undergoing a bone marrow transplant. 

last night after the Easter Bunny came, I still wasn't able to sleep and this is my Easter Eve ramblings I posted on Facebook:

Just my rambling thoughts on this Easter Eve......

Many years ago there was a movie that came out about the start of HIV and AIDS called And the Band Played On. When Tripp Roth passed away in January he had rallied so many people from around the world around him and around EB. And after he died, many of those people said they pictured him up in Heaven playing his drums; Heaven's little Drummer Boy. And it got me thinking...

I have been part of the on-line EB community for the past 13-14 years (WAY before I ever knew about Facebook) and have heard about a lot of babies being born with EB and I have also heard a lot of EB babies dying from EB. It's not something you will ever get use to hearing...but the reality is it's apart of life and it's apart of EB. I will always remember the first EB baby that was born and died after Sami with born, her name was Jordan. And the same goes for the ones who came and went around the time Garrett was born and died and around the time Joey were born too. So for the newest members of the EB community, I know the news of a new life claimed by EB is difficult to hear and it makes us sad and angry and all we want to do is turn off our computer screen and run and hide in our cozy beds with your kids pretending it doesn't exist but it DOES exist and I think that might be hardest part of all to accept. But we need to keep marching forward, toward a cure; The stories of Quinn, Chloe, Tripp, Seth, EJ, Bella, Elle, Nate, and all the other EB Angels, I wish I had the space to list them all, but their stories lead thousands of people to learn about EB and join our cause; And now even those great leader have gone on to better place, we are their band, And the band will play on....

Birthday Fun!

We finally had Summer and Joey's birthday celebration last weekend!  It was suppose to be at a local park but of course it had to rain so we moved the party to our house and once the weather cleared up we were able to enjoy sometime outside!  Thanks to the great friends and family who came out to help celebrate! 

Saturday, April 7, 2012

coconut oil, probotics and chamomile tea

I am sure as soon as I publish this posts I will have jinxed us and things will go down hill from here!  LOL  but I wanted to share somethings hoping it will help others.

When Joey was in the hospital when he was 2 weeks old he contacted the bacteria Pseudomonas.  For anyone who as ever dealt with it knows how difficult it is to get rid of.  Its one of those things that almost never goes away even with antibiotics.  Soaking in a vinegar solution helps but it still never went away 100% and after many, many months of dealing with it. it was starting to impacting the healing of his skin.  Then one day I got a message on Facebook from this wonderful family, who despite their overwhelming loss was still able to take time to share with me what helped Tripp when he was battling Pseudomonas as well  And that tip was Chamomile Tea baths!  I never would have guessed!

So we we started the Chamomile Tea baths.  I take 4 tea bags and soak them in 4 quarts of water (the time varies depending on how soon I remember to get it ready before his bath)  Then at bath time I add that solution to the bowl I fill with the water I use to pour over him and add hot water make to make it warm enough for him.  Then I pour the water over his body until the solution is all gone and I DO NOT rinse him with clean water.  We started this about 2 months ago and I did the Chamomile Tea baths about two times a week (the other days we alternated btw bleach, vinegar and baking soda) and we were getting neon drainage (classic sign of Pseudomonas) from many areas of his body every day.   Within a couple of weeks I noticed less neon colored drainage, so we started doing more Chamomile Tea baths and we were seeing less and less drainage!  And his skin wasn't as red as it had been before!  So now we do the Chamomile Tea baths 4-5 times a week and are very happy with the results! 

Since Joey was born we did regular bleach solution baths (1 teaspoon of bleach per gallon of water) to help prevent and clear up skin infections.  They seems to be doing a good job keeping the infections away but it was really rough on his skin.  About a month ago we realized that the bleach was killing not only the bad bacteria but the good bacteria as well causing yeast to colonize ALL over Joey's body.  His doctor would only prescribe topical medication but it was wide spread so I began researching all natural ways and came up on using Coconut Oil!  So I got some and we tried it.  Not only did it get rid of the yeast it started to heal wounds that hadn't been healing for months!    It was absolutely amazing!  We also started giving him probotics once a day and were able to reduce the amount of acid reflux medication he was taking.  I suspect it is also helping with is skin externally as well.  He has gone from 70% affected skin to about 30% (depending on the day)  We still wrap from the neck down but for protection mostly vs healing.  We no longer wrap his feet and his legs are good enough not to wrap but he LOVES to itch them so we need to wrap to protect him from doing more damage.  His torso/back is still the worst area but it is getting better.  Here is his back and upper thigh BEFORE we started the coconut oil and probotics:

And here is his back and upper thigh today: 
 (the middle of his back still has a ways to go, but its the lower back that is much better)

I still can't believe the improvement myself!  We will keep using these things and hopefully get the rest of him cleared up!  

So he still gets bathed and changed every day but now we ONLY do Chamomile Tea baths, Vinegar Baths and sometimes baking soda baths.  No more bleach baths unless we have massive issues with staph or MRSA.

I don't usually post wound pictures of Joey on here but for something like this I know you would need to see to believe.  Hopefully by sharing this will be able to help others.