I miss you

I miss blogging. I will be back soon. Stay tuned.

Not in the Photo Friday

Shameless plug warning!

Please vote for my kids in these 2 contests :)


Nylin at Parents.com Kid of the Week Contest

and

Jackson at Z1077.com's Jingle Baby Contest.

THANKS!

Wordless Wednesday

I know I need to do a Thankgiving day post, and I will. I am just super busy today and I HAD to share this picture with you.

I am so excited!

Thanksgiving is so close I can already smell the turkey and dressing cooking in my oven. I am so excited this year because my family from Georgia and Arkansas are coming up. I love me some crazy family time, and I need it. There is nothing better to me than sitting around the table or living romo with my family and just being with each other. LOVE IT!

I am not quite as excited about the food this year since I realized I am overweight, ergh. Back on the super diet plan and working out for me. I am going to start the Couch to 5K program, again. I have only ever made it to week 5. I am determined to be able to run a dang 5K though!!!!! If you are not familier with the program, take a look at it. It gets you off your rear (couch) and gets you running (a 5K) by doing interval training. I LOVE IT and HATE IT at the same time. I will try to remember to update you all on my progress.

Still in a funk....

I have been in a funk lately. My heart is aching so badly for all these little EB angels. My blog is suffering. Something has too and it can't be my home life. It can't be my husband, kids, family, friends or my job, so the blog it is.

Sorry for that.

I just do not really know what to write here. Do I put it all out there and risk exposing my true feelings and show much I am really hurting? or do I keep it vague? I don't really know how I feel about each of those options.

Jason and I are working HARD to get me out of this funk so hopefully I will be back to regular blog posts soon.

In the Photo Friday

Wordless Wednesday

So proud!

Kara is doing so well with potty training!!!!! We just decided over the weekend it was time and she went with it. She is so excited about wearing "und ware". We have had a few accidents but most of them are when she is running to the potty and she can;t get her pants down in time.
It will be GREAT not to buy diapers anymore!!!!!!!!!!!!!!!!!!!!!

Love you Kara Ann, You are such a big girl and Mommy is SO proud of you!!!!

Jace

Oh how I love this little boy. He can drive me crazy one minute and the next he can melt my heart.
Last night while putting him to bed he hugged me nicely and said "You my girl Momma"

Heart officially melted.

I tried adding more pics but the stupid uploader is just that, stupid!

What are you thankful for?

Nylin came home from school yesterday with a new book.  It is about being thankful. Very fitting for the month of November huh?

After reading the book Nylin asked me what I am most thankful for. I told her that I would tell her but she had to tell me first. her response?

"My family. I love you, daddy, Jace, Kara, Jackson and Buddy so much."

Sweet right?

Then she goes on.....

"and I am thankful that you have a good job so you can pay the bills and we can have a house."

I love this girl! She is so smart and loving, and one of the big reasons I am so thankful!



Wrodless Wednesday

CUTE CUTE CUTE!

Visiting Granny before the festivities!

JaceBot

My Pretty Little Butterfly

My Fierce Bat!

Bag of Peanuts and a Little Froggy!



Bag of Peanuts!



In the Photo Friday

Answers- EB Awareness

How do people respond to Jackson when you take him out in public?

We get a lot of stares but we do not mind. We think Jackson is perfect in everyway. We want people to see his awesomeness!


Do they comment or ask you questions about his blisters?

A lot of people will ask how he got a boo boo on him, or something similar to that. I would rather them ask then give dirty looks so it gives me a chance to educate someone about EB.


How do you respond?

We tell them that Jackson has a genetic skin disprder called Epidermolysis Bullosa, but we call it EB. Someone once told me that you should always give it a name and then you should tell the nickname. It makes it sound like a real thing and not something you made up. We try to explain as much as we can in the short passing we have with them. We want every one to know about EB and just telling every one we see is a good start, we think anyway.




Thanks for posting this. Is this a recessive gene, that brings it out. Like I know with CF its recessive and both parents have to carry the gene. Can your other kids get tested for the gene?

There is actually a reccecive type and a dominat type. I am not really good at this medical crap but I am going to try as hard as I can to explain this correctly.
There do not have to be 2 mutated genes in order for a baby to be born with EB. Just mom or just dad can carry the mutated gene and pass it to the baby. If both mom and dad had the mutated gene then the baby can have the recessive type of EB which is usually more devastating.

In dominantly inherited EB, the mutated gene is from only one parent who has the disease. When a disorder is dominantly inherited, only one faulty gene is required for the disorder to occur. A parent with a dominant form of EB has a 50-50 chance with each pregnancy that the baby will have EB. Birth order and sex of the child do not affect inheritance. If the abnormal gene is not passed to the child, the child will not have EB and cannot pass on the disorder.

In recessively inherited EB, both parents carry an abnormality or mutation in the same gene. But because recessive traits and disorders require two copies of the gene for the trait or disorder to be present, neither of the parents has EB. Instead, the parents are carriers of this abnormal gene. In these parents, the second copy of the gene is normal. In order for EB to occur in their children, both parents must pass the mutated copy of the gene to the child. When two copies of the abnormal gene are paired, recessively inherited EB occurs. If only one parent passes the abnormal gene to the child, then the child will be a carrier but will not have EB. With recessive inheritance, there is a 25 percent chance with each pregnancy that the child will have the disorder. An individual with a recessive form of EB will be at risk of having an affected child only if he or she has a child with a carrier or another person with recessive EB.


and if that is not confusing enough-

EB also can be acquired through a new or spontaneous mutation. That is, a child is born with a dominant genetic mutation that causes EB, despite neither parent having EB. When this occurs, it is because the gene spontaneously mutated in either the sperm or the egg before conception. Once the child has a dominant gene for EB, he or she has a 50 percent chance of passing the disorder to his or her children, as explained above. There is no scientific evidence that the parents could have prevented such spontaneous mutation, and there are no known environmental, dietary or behavioral triggers for this type of mutation.

yes all the kids can be tested to find out if they are carriers. When they decide to have babies in the future I am sure they will all be tested. There are also medical tests that can be done during pregnancy to determine whether the baby will have EB or not.



If the kids are carriers and want to be sure NOT to have a baby with EB then they can do insemination. I know one of the girls with an EB baby now is already talking about doing this for her next child. Using her egg and her husbands sperm they will "get pregnant" in a dish and then do the testing to make sure the "fetus" does not have EB. This is something I NEVER supported before coming in contact with this nasty disorder but I would NEVER wish EB on any innocent baby and think this is a good option for people to be sure they do not have to go through this.
It did not come out wrong at all. There is no wrong in my eyes when it comes to EB questions. I am glad you asked!







You are VERY correct in saying that Bella's was more severe than Jackson's. Jackson has EB Simplex- meaning that the "glue" from the TOP layer of his skin is missing. In Bella's case her "glue" was missing all the way down to the basement layer of her skin. Her type is called Recessive Dystrophic, or RDEB for short. This is generally the most severe type. The glue that I am referring to is the collagen genes that are mutated or missing.

check out this chart to kind of see where each type affects the skin-

Inbetween the 2 levels I already mentioned there is a form called junctional- depending on the actual type of junctional- it can be deadly as well.

So there are 3 main types of EB, Simplex, Junctional and Dystrophic. Inside each of those types there are further subtypes.


Jackson has been diagnosed with Simplex but without further testing we are unsure of the exact subtype of that. We guess sometimes but the type we guess varies daily, lol.


We will not need to know that further subtype unless there is ever a cure. In order to know what gene to replace we would need to know what gene is missing or mutated.

Is EB something that ever goes away or gets better over time?

There is a very very rare form of EB called Transient Newborn EB.

Sometimes the affected gene is just slow to form and it goes away around the onje year mark. Getting this type is even more rare than getting EB itself.

As far as getting better or worse over time- Every EB patient is different. From what people have told me it is worse as they are babies and as they get older the blsiters kind of change locations. Like when he starts crawling he will have more blsiters on his knees, when he walks he will have more on his feet, etc.

How does this affect him as he gets older?

Every EB patient is different. It could get better, it could get worse. I am sure there will be things he will have to avoid, like contact sports, running long distances, or maybe even walking. A lot of people with Jackson's type usually end up in a wheel chair for outtings because walking long distances can really affect the feet.

Will he have to wear protective items to make sure he doesn't get hurt?

It will be up to him how much or how little he wants to wear. I am not going to make him be in a "bubble" his entire life. I will let him decide what he wants to do. When he crawls I will make sure we put some sort of non-adhearent (regular adheasives tear his skin right off) bandage on him so he does not cause friection on his knees. If he has a very open area then I will make him cover it up in order to avoid infection.

Wordless Wednesday

EB AWARENESS

Hello again. Sorry if you feel like this blog has been taken over by EB. I have a lot of other things to post about and I will get to them, after this week. EB is very much a part of our daily lives and I want it to be a part of your life too. I want you talking about it. I want you telling people about it. I want YOU blogging about it, facebooking about it. EVERYTHING! Join the Webb family in getting the word out about EB.

I literally talked to everyone I saw about EB yesterday. I talked about it at physical therapy, dance class, facebook, blogging and on a private paretning board I am blessed to be a part of. Everyone is asking questions and I am doing my best to answer them. Who did you talk to about EB yesterday? Even if you just call a family member and educate them on it, that is one more person that knows about EB.

Please go to dEBra and look around and learn a few things, donate a few bucks in Jackson's name while you are there! Or go to EB Nurse and learn a few more things.

Knowing is half the battle people.

Just think of my little man for a second and really think about what he wants you to do.

How can you say no to this face anyway?

EB AWARENESS WEEK

Thanks for the picture Courtney!

EB Awareness Week

Today is the first day of EB Awareness Week. I am trying to tell everyone I know about EB.

PLEASE if you have any questions you have been meaning to ask or maybe just thought of, please ask. I want YOU to know as much about it as I do.

No question is a stupid question and no question is too personal. I WANT to talk about it. Do you want to know how to pronounce it? Do you want to know what causes it? ANYTHING, JUST ASK!!!!

I think a lot of people in my life are afraid it will upset me but it doesn't. I makes me happy to talk about it.
EB is so rare and it is REALLY hard to get funding to find a cure. The doctors at Stanford University are trying everyday to find a cure for this devastating disorder but without awareness and funding that will never happen. Please help me help them today by learning something new about EB.

Sorry

I just can't blog lately and I am sorry for that. I do not know what the right words are right now. I am mourning the loss of a beutiful little butterfly, Bella. Her parents are doing a much better job than I am myself.

How is that even possible?

Well, I think they are in a much better place with their faith than I am.

Since Jackson was born I have been questioning my faith and my beliefs. I have been so damn angry and I hate myself for it. I know He has a plan for all of us but quite frankly I do not like this plan. I know it is not my place to dis-like any plan He has for us but dang it why? Why do all these little babies have to suffer? I understand the sin of the world and mankind having to pay, blah blah blah, but why? Why little babies? It just makes me so sad. As I type this I have tears streaming down my face. It is an occurrence that happens a lot more than I would like. I love my son and I am so very thankful that God has blessed my family with these amazing little children. I think God every day for my children. Sometimes I even ask him to give me some understanding. Someone told me the other day that it is not for me to understand. Ergh. I KNOW that BUT I WANT to, dang it.

Jackson is doing so well and everyday I just hug him a little tighter. After "attending" Bella's memorial service yesterday I realized I really need to get right with myself and my faith. The way that Tim, Ang and Ali understand God's plan for Bella is the way I want to understand God's plan for Jackson. Please say a little prayer for me because I have a lot of soul searching to do!

Blogging may be few and far between for a while but I promise I will try.
I hope to post Jackson's 5 month pictures soon. That's right, 5 MONTHS!!!! He is such a big boy!

Anabella Claire Ringgold

May 27, 2009 - October 11, 2010

 

Sweet Baby Bella went to be with Jesus yesterday. Please say a little prayer for her family.

If you have not already read her story go here Care for Anabella

My heart just aches for the Riggold family. I know Bella is in a better place now but I just can't imagine the pain that the Riggolds are in right now.

Rest in peace Bella.

Wordless Wednesday

October

October is always a favorite month of mine. There is always so much going on and I just LOVE IT. There are so many reasons to love October.....

The weather changing is something I look forward to every year. I wish it would stay like this though. Highs in the 60's and lows in the 30's is PERFECT weather.

My amazing husband was born in this month too, that makes it all that much better. Today is his birthday! Happy Birthday to the one and only love of my life. I would be lost without him. I love my husband more and more everyday. I thank God for him always but the month of October makes me thank God a few extra  times!

I also love Halloween. I love going to the pumpkin patch, carving pumpkins, getting the kids all dressed up and of course the candy!!!!

And my newest reason for loving October?? The last week of October is International EB Awareness Week. The week is October 25-31, 2010. 
The main objectives of International EB Awareness Week, and the Walk a Mile in My Shoes campaign, is to boost awareness among policy-makers and society at large about EB and its impact on the lives of patients and patient families.  As the month progresses I plan to post a lot about EB. I hope that new people come to read about it and I pray that some people learn some things. I am so new to the EB world and the only thing I really have to offer is my experiences so far and my BIG MOUTH! I knew having a big mouth would pay off someday!!!!

Wordless Wednesday

I am so thankful today.

I was not yesterday. Yesterday I felt sorry for myself and for Jackson and all he has to go through. I was angry and depressed all day. I wanted nothing more to just crawl back into bed and not face the day or the blisters or the diaper changes that revealed my sons raw hiney. I just hated everything and even said out loud several time "I HATE EB!!!!!!!!!!" I really do hate it but what gives me the right to feel sorry for me???

Around 4 yesterday afternoon while I was lying on the couch feeling sorry for myself I decided that was it. I got up and told Jason "I guess I need to snap out of it and stop feeling so damn sorry for myself." He just smiled at me. He knew I was going to realize that eventually and just let me come to it on my own. Some days we just move on like normal and some days I need that slap!

Today I am so thankful for everything in my life. Not just the normal stuff like my husband, my kids, our health and our jobs. I am really truly thankful for things like the ability to hug and hold Jackson, my ability to dress him in normal clothing, put him in a car seat, and even just to feed him. I am just so thankful for the little things that we get to enjoy with Jackson. Even though EB really sucks no matter the type or the severity,at least we have some things to be thankful for. Do we have to be super careful? Yes, but at least WE CAN do some things. Some EB babies are covered from head to toe with bandages and they wake up and go to bed in pain. Hugs, clothes and food are all things those babies hope for.

Although Jackson's wounds make me sad everyday I just realized that I have to stop feeling sorry for me. Really how is feeling sorry for me going to do any good? How is it going to do Jackson any good? It's not. Not at all. Of course I can be sad for Jackson sometimes but not to the point where it is going to slow him down. From the looks of it, this kid is not going to take EB lying down. I am sure he will have his days where he screams "I HATE EB!" just like his mommy BUT I bet he laughs at himself when he is done. That is just who he is. I can tell already. I am so thankful for that!!!!!

A BIG thanks to  Courtney for helping me to realize that we have so much to be thankful for. Courtney is an awesome mother and I just pray that one day I have the same strength and faith that she does. The way she carries on her life with her amazing son Tripp is a true inspiration. To make a long story short, Tripp has junctional EB and has been having a rough time lately. Please say a prayer for Courtney, her husband Randy and Tripp. I know I do, everyday.

So Big!

My baby boy is growing like a weed!!!

A few things.....all about Peanut

I do not have much time today. I really should not even be here now but I need a break from this crazy project I am doing for work.

- Jackson is rolling over. He is rolling from his back to his belly. When he gets onto his belly he screams. He HATES being on his belly.

- Jackson is cutting teeth. Yuck. Last night was terrible and he was up every. single. hour. My new best friend is Hylands Teething Tablet! Thanks Angie!

- I am super happy to tell you all that we are going to Ohio in December. Jackson will be seen by a team of doctors that  know all about EB. Cincinnati Childrens EB clinic is one of very few EB clinics in the country. I have talked to a few people that have been already and they LOVE LOVE LOVE it. Often the parents know way more than any local doctor about EB. Even though Dr. W is amazing and takes very good care of my children, he asks me questions about EB and how to care for Jackson. EB is just SO RARE that there are not many people that know about it, much less specialize in it.
Now for the fun part- getting it all approved with our health insurance. We will be seeing several different specialists and each requires a separate co-pay. Hopefully since we are double covered we won't have to pay a penny. Going out of town in December is crazy enough!

- Speaking of EB being rare, an EB friend of ours is doing a fundraiser in order to raise money and awareness for EB. Head on over to Chris' Dunk Tank page and vote for an idea or submit an idea of your own! Chris will be doing whatever crazy dare wins in October during EB Awareness Week.

Wordless Wednesday

Welcome to Holland By Emily Perl Kingsley

Jason and I ran across this the other day when reading another EB parents blog. We both think that this is the best way to describe how we feel. It was written by Emily Perl Kingsley. Emily has been a writer for Sesame Street since 1970. She has a son with Down Syndrome. you can read more about her on her Wiki Page.

WELCOME TO HOLLAND- by Emily Perl Kingsley.


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.


After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."


"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."


But there's been a change in the flight plan. They've landed in Holland and there you must stay.


The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.


So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.


It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.


But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

In The Photo Friday

Tired of pictures of me yet???

4 Years ago today I became a Mrs!!!

I am so proud that Jason chose me to spend the rest of his life with. Everyday is even better than the last when you are spending it with the love of your life.

I love you honey!

Wordless Wednesday

In the Photo Friday

Nylin and I at Sarah's 5th birthday party last weekend.

Never a dull moment....

It is always crazy busy around here with 4 kids. Sometimes I barely remember to brush my own hair. Every once in a while the kids like to add a little more mayhem to the mix. This week we have:

• Jace acting like he has been raised by baboons
• Jace having asthma attacks
• Jackson developing a staph infection.

That's right folks, no dull moments!

So let’s start with the baboon boy. For some reason my little sweet three your old son has turned into a wild animal. It is all we can do not to drop him off at the zoo and RUN! Some say it is because of Jackson (new baby in the house, no attention, blah blah bla) but I don’t think so. I think if it were Jackson then Jace would have been acting out more in the beginning, which he was but he got better and now worse again. I would like to think that it is just his age and this shall soon pass. If not you can you PLEASE pass me a drink.


see the resemblance???

While running around like an insane monkey three year old, Jace is having asthma attacks. I just mentioned to someone at the beginning of the week that he has not had a real attack in about a year. The next day he had an attack. Have you ever tried making an insane monkey three year old take a breathing treatment? It is NO FUN!

While all this with Jace was going on Jason started noticing a lump on Jackson’s chest. Basically it is on his breast. I did some google searches and thought it was due to witches milk. It is very common for boy and girl babies both to develop a tiny little breast bud while nursing. The increased amount of estrogen from mommy can sometimes cause this, no big deal. We left it alone. Then late Tuesday afternoon Jason tells me to take another look at it and thinks that it might be forming a small head on it. I freaked and called the doctor. Of course they thought it was witches milk as well. When I mentioned that it was beginning to look like a pimple they freaked as well. Wednesday morning we took him in to the Dr. W and low and behold, Jackson has a staph infection. Just the thought of having to take Jackson to the ER was giving me major anxiety. ER’s can be very dangerous for babies with EB. EB is so rare and people just don’t know what to do.

Luckily Dr. W was able to drain it in his office and put him on antibiotics. The draining was no fun at all but Jackson is a trooper. He maybe cried for 2-3 minutes. He is a tough guy!!! We are back home now and are running a 10 day course of antibiotics, keeping an eye on it and praying that it goes away!
We are hoping this is not the start of something with Jackson. Staph can be very serious (as I am sure you remember from Kara!). Kids with EB are much more prone to infection due to all the open sores on them. The strange thing about this spot is that there were no blisters or open sores in that area, ever.
They are guessing he may had had a small open pore there and the staph just made its way in there. Poor guy!

The really strange thing is- I just told someone earlier in the week that we have been able to keep Jackson infection free. A few days later, infection! No joke. I can’t make this stuff up people. I am just done making any comment whatsoever concerning my children’s health!

There is never a dull moment around here but I love my crazy life! If thing get a little crazy I like to call my juggling act cardio. It makes me feel better.

Wordless Wednesday

Blogger Blah

I am sorry I have been kind of blah with the blogger lately. I spent yesterday and today going back and reading my posts from 2008 and 2009 and I realize my blog is seriously lacking in something. I have been so busy that something had to suffer. I feel like my blog is a bunch of pictures with no back story and that is not me.
I hope to get back to daily (or at least 3x a wk) blogging. I really love documenting everything that goes on in our lives. I know that my family (in and out of town) enjoy it.

The future of this blog has had me stumped for quite sometime. I have been trying to decide if I should include everything related to Jackson and his EB in this blog or start a new one. Well after reading all of my old posts I have decided to keep everything here. Jackson's EB is just another part of our crazy lives and why make it crazier by adding another site?? If Jason and I are able to start up some fundraisers for EB awareness the way we want to then I may start another blog for that. For right now I think keeping everything here is the way to go.

I am going to try and make more posts throughout the week and try to keep everyone updated on everything. I think blogging helps to keep me sane as well. Laughing at all the crazy things that goes on around here makes things a lot easier!!!

I hope you all stick around and keep reading and I hope we have not lost all of our readers during our hiatus. I do hope you understand our hiatus. I struggled with Jackson's birth story and his EB story for a long time. I felt like I needed to write it, or something, to move on with the blog. I am glad I did and it makes me feel MUCH better to have it all out there. I hope to continue to write about his EB but to also focus on the other kids and the things that they have going on in their lives. Each of the children are growing and changing everyday. It is fascinating to watch them (and a little stressful!).

If there are things you would like to see in my blog or questions you would like answered feel free to post them in the comments section and I will do my best to get to them. Thanks for being so understanding of my crappy blogging as of late and I promise to change that! It might take me a week or so but I plan on re-vamping this place. Stay tuned.....

Peanut needs your help!

Jackson MUST dress as a Peanut for Halloween. I am having a hard time finding something cute.

I am not a fan of this at all.


and this one is okay, I guess, but I want something SUPER cute.



Do a little searching around for Peanut and comment with any good finds!

Please?!

Thanks!