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Wednesday, February 13, 2013

Ben Jr's 2nd Valentines Day


Hello everyone. Wanted to drop by and let everyone know that Ben Jr has a infection right now, we are treating it with home remedies. It is not bad, but is draining a little greenish discharge, so far, it is looking better. We are keeping it watched. Ben Jr has EB and EB not only effects the outside skin, but the inside skin as well. We were all diagnosed with Influenza A about 3 weeks ago and during this time, Ben Jr did very well, although the coughing here and there irritated Ben Jr's throat and caused internal blisters, he was vomiting blood and skin. He has recovered well and so far he has been fine. Thank the Lord. Up coming Doctors Appointments these next couple weeks. To check his weight, blood work, find a formula/milk he can tolerate and drink, and touch base about his skin graft cell therapy for his left foot that is still raw from birth. On a good note, he is eating more and moving all over, he is trying to put pressure on his feet and knees, but he is still hesitant to do so. Also going to talk to his pediatrician about PT. 

Please do not forget to spread the word about EB... tell the gas station teller, or the person at the window at McDonald's... tell your co-worker.... and please continue to pray everyday for us, it is the hardest thing that a parent could ever go through, sometimes I see FB friends sharing Ben Jr's photo's and I am in aww, reality hits me and I think "that is my baby, this is my life" sometimes it is just surreal. 


We have the auction coming up!!!!!!!!!!!!!http://bidsforben.wordpress.com/  Please help us with items for the auction!! We are in need of any item that you may find valuable! email bidsforben@yahoo.com for more information =)
Also, we do have a amazon wish list that can be found by going to http://www.amazon.com/gp/registry/wishlist/3OYWOYPSQ0F3M/ref=topnav_lists_1


If anyone would like to mail items to Ben Jr or to mail a "buck for Ben Jr"they can be mailed to;
 1557 NW Eucalyptus Ave
Arcadia,FL 34266 


I am so thankful for everyone that has followed our journey so far, we focused so much on Ben Jr's care the first 9 months of his life and we have only been public about our story since August 2012. Prayers are cherished more then anything in this world, we serve a mighty God and I know that he is able. Thank you all for your continued support.
~Sirena

Friday, January 18, 2013

100 pennies



Have any of you ever taken the cushions off your couch and found a bunch of change hidden in the cracks and crevices?


When I was younger and in need of money for the penny candy aisle at our neighborhood market I would always go down to our basement and lift up the cushions on my dad's couch.  It was rare if I found less than $1.  Do you know how much candy a kid can buy in the penny candy aisle for a dollar?  I would walk back home with a little paper sack full of candy- it was heaven for a 10 year old kid, those are good memories for me.

One dollars worth of change got me a whole lot back then, but one dollar can still do a whole lot these days.  I'm not asking you to go buy a bag full of penny candy- though I don't know of any stores that even have penny candy anymore.  But I am asking if you would please consider donating one dollar to Ben Wiley Jr.  One dollar from each of us would add up in such a way that we could be a help to Ben Jr's family and the medical expenses they incur with his EB.  One dollar, one Buck for Ben.  Most people have spare change hanging around their house somewhere- 4 quarters, a few dimes and nickels, a jar filled with 100 pennies.  Just one dollar. 

 
We've made it easy for you to donate too.  Look to the sidebar on the right side of this page- at the top is a "donate" button from paypal.  Just click on that and you'll be redirected to paypal's secure website.  If you already have a paypal account the donation will be super quick and easy, but you can still donate through paypal's website even if you don't have (or want to get) a paypal account- it only takes a minute.

One minute- One dollar- One Buck for Ben Jr. 

I have good memories of those penny candy days, but we can all make new and good memories by helping and being a blessing to the Wiley family. 

Please go now and donate your Buck for Ben Jr.

Thank you,
Julianne Smith


 
To learn more about Ben Jr. and epidermilysis bullosa (EB)  go to the About page of this blog.
Also visit and "like" Ben Jr's facebook page (click on the link in the sidebar)

Wednesday, January 9, 2013

Ben Jr's Journey Day 1

Oct 26, 2011

Just like any normal day, Brasaya was off to school, and we were headed to another Doctors appointment. Dr. Dan, was my OB/GYN for all three of my children, older man, in his 70's, tells me  "your dilated 2 cm., we will see you next week, if you do not go into labor by next Wednesday we will induce labor". As we went home that day I called my aunt and she was excited and was bragging that Ben Jr. would be born on her birthday, Nov. 3. Home we went. I was miserable, 40 weeks pregnant and it was my due date.

 When we got home I went to sleep. I woke up and told my husband that I was not feeling well. Ben Sr. was all excited and said, "YES hospital time baby!!! Give me my SON!" He shouted jokingly! We decided to go to the hospital, packed the girl's bags, dropped them off at my mom's, contractions were coming, but they were very different then I remembered.

 At the hospital they hooked me up to monitor Ben Jr. and the nurses bragged about  how strong his heart beat was and how he sounded so well. 9:15 p.m. soon became 11 p.m. the nurse came in and checked me, I was dilated 3 cm. The nurse goes on to tell us that they will be discharging me and for me to come back when my contractions are 2-3 mins apart.  I told her that I thought that it would be a waste of time due to the fact of my labor's always going by really fast.

Oct. 27, 2011

Next thing I know I am walking around the labor room, rocking in the rocking chair, squatting and   screaming in pain with every contraction. My husband just told me, " walk it out, its going to be alright."  Nurse comes in and says, " since your contractions are not showing up on the monitor we need to check you again", at 1 a.m. she checked me and I was a full 10 cm dilated  Shocked she called Dr. Dan in and moved me to the delivery room. Screaming with every contraction, I was so scared, again, here I am in the same delivery room, but it was so different this time, I was bringing my son into the world, our first son. I was so ready to meet him and his room was ready and waiting for him. He would be the first grandson, great-grandson, and nephew in our family, the anticipation of meeting Ben Jr was so welcomed by so many!

About 5-6 pushes and Ben Jr. was out. Dr. Dan as always, let me do the work and deliver how I wanted, he set my son on my stomach and Ben Sr. cut the umbilical cord. I remember holding Ben Jr. and he was so perfect. Immediately nurses took him and was cleaning him and checking him. My husband looked at me and said "Whats wrong with him, there is something wrong with his hands?" I never noticed it, I looked over and seen complete raw skin on his hands and one foot. First thing that I thought of was those red birth marks. Dr. Dan and my husband were talking and Dr. Dan looked at my husband and I and said " I have never seen that before". Coming from a OB/GYN that has over 40 years of experience, that sentence was scary.

Dr. Dan ordered the nurses to call in Ben Jr.'s pediatrician. Thank God that she knew what it was. She seen Ben Jr. and then came straight to me, I was still on the delivery table! She came in and she said " Well you have a very healthy son int here but we are going to have to transfer him to All Children Hospital In St. Petersburg, Florida in order for him to get the care that he needs", then as she started to cry and choked up she adds, " By sight it looks like he has a condition called Epidermolysis Bullosa." She continued to cry, and I was in shock. First thing out my mouth was "Ok, so what do we need to do to cure it?" She began to break down and said, "There is no cure".... I am laying here, on the delivery table, just about 10 mins after giving birth and I have never heard of EB in my life. Now my son, is born with it. I looked at Dr. Harrison and I said " Thank you for getting up at 1 a.m. in the morning to come see him, I know that you have a family of your own and I hate that you had to get up for this" she cried some more and said "Thank you, no one has ever said that to me"  It was quiet for a minute and I just remember starring at the sink and I said "You know,  there is a cure and his name is Jesus, I have to give it all to God and trust that he has a plan."  Dr. Harrison replied, " Yes you are so right, Amen. I agree."  I told her, that I felt helpless, there was nothing that I could do, and when your in that moment, it is out of your hands, and there is only one thing to do and that is humble yourself to God's will.

I was moved to a room and Ben Sr. never left Ben Jr.'s side. He watched as the nurse pricked the sole of his foot to get blood and the skin rubbed right off, the nurses had never seen EB before and they were all in shock. Dr. Harrison had the nurses wrap Ben Jr. in Vaseline gauze and cotton blankets for transfer, they brought Ben Jr in my room and I got to feed him before he left on his transport. He cried and cried, every time he opened his mouth you could see that his mouth was full of blisters. He looked at me and I sang to him, " In the name of Jesus, in the name of Jesus we have the Victory" he quieted down and just looked at me as I sang to him, he was so sweet.  Through this whole time I never shed a tear. I was trusting in the Lord and I had a peace within me that everything would be alright. I thought that I would get to go with him to St. Pete, but I was not able to. I had to stay and wait at least 12 hours before being released. Ben Sr. was planning on going with Ben Jr. They were going to air lift him out, but since the wind was too strong they had to send a ambulance. So, we have a good 3 hours with our angel before transfer. (All the above took place in about 1 hour after birth)

Transport got there a little after 4 a.m. and they came into my room, they looked like a team of astronauts all suited up, ready for take off.  The sweetest people you will ever meet.  All Childrens Hospital sent 4 Pediatric EMS transport members since it was considered a severe case, and there would be no room for Ben Sr. to go. They explained everything and said that they would take the best care of Ben Jr. as possible. I asked which one was the driver and I told him, " Now you are carrying precious cargo, make sure our son gets there safe and make sure that when you get there, the nurses and doctors know what they are doing."  He told me that I can rest assured that he would make sure Ben Jr. was in good hands with someone who knew about EB. I felt safe and secure, especially when he mentioned, that he says a prayer before every transport and had to hug me before leaving. I want to add, that during this time, there is nothing that I could do. We were clueless as to what EB was, I had no intentions of this happening, in my mind I was going to have my son, go home and we would go right back to work and everyday life. I had to trust that this medical team and hospital were what was best for our son. It was a decision that I put in God's hands. Little did I know, our normal everyday life died that minute that Ben Jr was born." Forever changed by EB",  is an under statement.

Ben Sr. watched as they prepped Ben Jr. for transport, well actually he filmed the entire thing. When they left he followed them out and talk to the drivers, they assured him many times that he was in good hands. When Ben Sr. came back up to the room, he cried, like I had never seen a grown man cry before. He said, "that's my son, I don't want him to go alone, he is going to be scared I need to be there with him, but I cannot leave you, I have to have both of you well, I cannot live with out you both"

We slept until about 8 a.m. Transport called us around that time and said that they made it safely and that Ben Jr did excellent on the way there. There was a nurse assigned  to Ben Jr. named "Melissa" and she knows about EB very well. She was a primary nurse for another EB baby that was born in 2010. They gave me a number and said that we could call her with any questions.  All the nurses there at the hospital where we were came in to talk to us and recommended that we do not google EB. Dr. Dan came in and we talked about everything he said that I was free to go after 3 p.m. and he laid out rules for me to follow, I was to answer his calls daily so he could check on me, etc. My grandparents came up to the hospital and we prayed together, I talked to my father that I had not talked to in about 6 months, my sister in law googled it and she was in shock and completely scared. I was discharged and we went and picked up our daughters and off to St. Pete we went. 3 hour drive. We only had one car at the time and it was not in good shape, so we took my grandparents car.

When arriving there, Ben Jr. was on the 6th floor NICU...  When we finally got to see Ben Jr., he was like an angel. His nurse Melissa was like a bull dog! She was strict to any one and very, very organized. She had everything in order. His wall above his bed was completely covered in neon signs that read "NO TAPE, DO NOT TOUCH ME ask my NURSE first." The girls, they did not see the bandages and wires strapped to him, they seen their little brother. I remember sitting in a chair and listening to the girls talk to Ben Jr. and I over heard the nurses behind me say " Why are there 4 of them back here, they're only allowed 2 back at a time?" The other nurse responded, " they need a moment together, he most likely will not make it" ... (the devil is a lair)

We left Ben Jr. after he ate and returned to sleep. We went out of the NICU into a room with a huge table, like the ones you see on TV where they have big board meetings. We sat down with a group of Dr.'s and skin team that treated Ben Jr. when he first arrived. They explained to us that they thought that it was EB and that it was severe. They went on saying that they could not get him to eat, he blistered within minutes, they were going to need a dermatologist to come in a take a skin biopsy to send off for testing. skin team would do dressing changes, a plastic surgeon was coming to see Ben Jr. as well, he had 2 around the clock nurses and a A.R.N.P that was specifically assigned to him..etc.etc.etc. They asked us if we had any questions and the first thing my husband asked was " Will it get better?" they replied, " I have seen some that did and some that didn't, it all depends on the type. There were 8 doctors, 6 out of the 8 had never seen EB before. My question was," what are we looking at as far as health and over all life span", one lady doctor said " Everyday dressing changes and care hourly, as far a life span it ranges, lethal in 24 months to 30 yrs" When they left out of the room for us to have a minute, I broke down like I never had in my life, my husband and I held each other and cried and prayed together.

We had no money on us at that time, my family and  friends let us borrow money until we could get it back to them. Finally we were in touch with the Ronald McDonald house and they had a room for us to stay in. They were across the street from the hospital. Going to see Ben Jr. before we went to lay down for the night, the nurse told me that she was worried, Ben Jr. vomits everything that she tried to feed him. I told her that he was probably lactose like his sisters and maybe she should try soy milk.We left Ben Jr. for the night and his primary told us that she would not leave Ben Jr. with someone that she didn't trust, and she made sure that Carrie knew everything about him and what to do. We went to the RMH and got settled. Carrie called me to inform me that Ben Jr. drank about 1 oz of soy formula and kept it down. =)

All this in one day.

 My next blog I will include learning dressing changes, RMH, doctors  nurses, bad experiences, meeting another EB family, and our 3 weeks at All Childrens Hospital in St. Pete, FL.... and the story begins.

Sirena







Monday, January 7, 2013

Hello Everyone this Is Kay Broad! For those of you who do not know me already, i'm a friend of the family :) The other day I was checking my messages and came across a message from a sweet family, Mike and Julianne. Julianne had a wonderful Idea to start an event for Ben Jr. called " A buck for Ben"! :) In no time we created the event and started sharing it on Ben Jr.s page! Such and amazing Idea Julianne!! :) THank you so much for your idea! This means EVERYTHING to Ben jr. and his family! Your idea couldnt have came at better time! This month Ben jr. has cell therapy and genetic testing coming up that may not be covered by insurance and as always this family is in need of supplies to care for Ben Jr.  Bandages alone can cost $10,000 per month!! Not even half of that is covered by insurance!! " A buck for Ben" is a Blessing! Just $1 can help sweet baby Ben jr. and his family so much! If just everyone of Ben Jr.s followers gave a buck, it would add up so quickly and help Ben JR. and his family so much!! It would make their lives a little easier! They have enough to worry about and as Ben Jr.s EB Prayer Army if we all come together, we can do so much to help them!! I want to Thank all of you from the bottom of my heart for all the prayers, love, support, warm wishes, kindness, supplies, fundraisers, gifts and all that you do for sweet baby Ben Jr. and his family! This means so much to me and EVERYTHING to Ben jr. and his family!! Special thanks to you Julianne for going even further to help Ben jr. and his family by creating this blog to reach many more followers outside of facebook, as not everyone has facebook. Thank you for helping us spread awareness of EB , as awareness is the key to  cure! A cure needed a long time ago! Please everyone share this blog with everyone you know and  "a buck for Ben" as we hope to make this event big for Ben jr. and his family! They need our help! Sirena and Julianne, I look forward to blogging with you both! God BLess you both and your family and may God's Blessings rain down upon all of you today and everyday!! :)                                                    
         
                                                                                          Kay Broad :)
Hello! I am very excited about being able to blog finally. Being a mother of three children, I have never had the time to sit down and create a blog, but thanks to Julianne Smith, now I can. She is an amazing woman that I have never met before, yet she took time out of her everyday schedule to make a blog page for Ben Jr. I am honored and I thank God for the great people that he has sent to help us along  our journey. 

Looking forward to blogging and getting the hang of things. Hope that we are all having a happy New Year.
God Bless and thank you all for following us.
Sirena

Sunday, January 6, 2013

Saturday, January 5, 2013

 
This past year I came across a facebook page called, Honoring a EB Soldier "Ben Wiley Jr". The face of the baby was precious, and he stole my heart instantly. But my heart was pained as well because of the condition he suffers with on a daily basis. It is called epidermilysis bullosa, EB for short. Benjamin Joseph Wiley, Jr. was born on Oct 27th, 2011. Though it had been a normal, healthy pregnancy and delivery for Ben and his mom, it was immediately clear that something wasn’t right: baby Ben was missing the skin on his hands and his left foot, and had blisters in his mouth and on his lips.
In a nutshell, EB is a connective tissue disease causing blisters in the skin and mucosal membranes, with an incidence of 1/50,000. Its severity ranges from mild to lethal. It is caused by a mutation in the keratin or collagen gene. People with EB lack these protein anchors, so when there is any friction on the skin, the two layers rub against each other and separate, resulting in painful sores and blisters.

The pictures of little Ben Jr. broke my heart, the posts from his mother tore at my heart even worse. As a mother myself I couldn't imagine what Ben's parents, Ben Sr. and Sirena go through each day. To witness the pain Ben Jr. is in each day seems unbearable, but then to have the cost involved in taking care of his wounds each day is an added weight on their shoulders. My mother's heart is to be able to help them by easing the burden of the cost involved. I know times are hard- financially speaking, but I truly believe there is a way to help in a BIG way, but that would only leave a teensy-weensy dent in our wallets. It's called "A Buck for Ben Jr.". One buck, one dollar, that's it! I know to us one dollar doesn't seem like much, but if EVERY ONE of Ben Jr's followers donated just one dollar to the family it would add up so very quickly and help them out in a HUGE way!

Would you please consider donating a Buck for Ben Jr?

It is easy to donate via paypal. Paypal is a safe way to transfer money easily using your email address. Signing up for paypal takes only a few minutes, and donating a dollar is safe and easy. Just click on the donate button on the sidebar to be redirected.  You can donate even if you don't have a paypal account, use your credit card or bank account to easily make a donation by clicking on the donate button.

If you would like to learn more about Ben Jr. and EB please visit their facebook page: https://www.facebook.com/#!/BenWileyJr

and please Share this page, Pin it, Tweet it, etc. The more exposure "A Buck for Ben Jr." gets the more this family will be helped!


Be a blessing by donating "a Buck for Ben Jr."! Thank You!!