the eb reality

This week is EB Awareness week. As you may recall, last year I wrote this letter about EB and stuffed about 100 of them in neighbors mailbox flags. This year I just thought I might write a few things that might enlighten some of you (or your friends, neighbors, people you know) to the realities of EB.


First off, if you want to send people to a comprehensive, easy to understand, accurate description of what EB is, send them HERE.

Our reality:
- a child who doesn't eat anything but a few (I really mean a few, three) bites a day. That means we can't get out very much and have to do tube feedings wherever we are, if we HAVE to be gone during meal time.
- daily two hour bath/dressing changes
- constantly fearing that Jonah will fall
- cleaning up blood, draining blisters, bandaging boo boos on the spot, even when we're at weddings, parties etc because he's a little boy, wants to run, and most always falls at some point.
- constant blistering of Jonah's face and hands, with no way to protect him AND allow his face and hands to be free. draining blisters two to three times a day.
- severe fragility of Jonah's skin, even the bandaged parts. Today I unbandaged him and he had a HUGE blister on his left knee and a huge wrap around blister on his lower left arm. new blisters every day.
- stares and questions (sometimes rude, sometimes not) every single time we go out in public
- having only two babysitters that know how to do g-tube feeds and can keep Jonah if we ever need/want to get out of the house together
- LOTS of money spent on over the counter products (formula, cloth diapers, disposable diapers (to cut elastic off of), flaxseed oil, avocado, Desitin, diaper salve, seamless socks, iron-on grippers for seamless socks, etc) that we only have to use because of the effects of EB. things you'd never think of.
- eleven medicine doses a day
- constantly figuring out a blended diet. blending TONS of mixed veggies, broccoli and cheese, avocado, and blueberries. trying, for the love of all things nutritional, to figure out how to stuff the calories he needs into seven oz servings while still allowing him to experience hunger in the hopes that he might eat by mouth.
- making and blending meals every morning
- a kid who screams in agony every time he has to poop his diaper
- hardly getting outside at all from the months of May through September
- having to run a water pump overnight because he also won't drink anything but a few sips of water every day. gags on milk, juice, or any other liquid that has a taste.
- severe acid reflux and throwing up
- thinning hair
- weekly feeding therapy
- monthly nutritional and developmental therapies
- teeth that have very little enamel and anticipating many future dental surgeries/probable false teeth. like by the time he's a teenager.
- marital stress. feeling guilty that you can be normal and do normal things when your only child cannot.
- watching your child suffer and being able to do very little about it.
- always coming at your child with a needle or suture scissors to "clip clip" one more "boo boo". a child who knows the sound of the sterile gauze packet opening and screams in fear before you've even touched him.
- causing a corneal abrasion if you accidentally poke your kid in the eye, ripping his ear lobes or taking the skin off his chin if you take off his shirt the wrong way, giving him huge wrap around arm and leg blisters if you lift him the wrong way etc.
- between three g-tube meals a day, two hour bandage changes, and nap time, there are about two hours of the day we can leave the house, given it's not too hot.
- having to avoid large crowds, knowing that your kid wants to walk and run around like everyone else, but that if he gets bumped or knocked over, it's bad news.
- wondering if the next time he gets a normal cold or virus, THIS will be the time he ends up in the hospital with his breathing issues
- having a child that refuses to wear anything but regular crocs, because he's afraid of other shoes because of the pain. no tie-ups. no boots, and now a refusal to wear his NB sneakers because when his feet were so torn up (for almost three months) they made him hurt.
- wondering if your child will have a hard time making friends, get made fun of at school, ever have a girlfriend, get married, have sex, or get to have kids of his own. wondering if he'll live long enough to even get the answers.
- wondering how in the world to explain to him that God really does love him and made him special. praying desperately that he'll not use EB as a reason to turn his back on or hate God.


Other EB Sufferers' Reality:
- battling infections every day
- becoming immune to oral and, often times, IV antibiotics
- seemingly constant hospital visits and doctors' appointments
- having esophageal dilatations two or more times a year because of strictures (scarring) in the throat
- tracheotomies (due to scarring in the trachea)
- struggling to eat
- sloughing of intestines
- struggling to breathe
- disfigurement of hands, feet etc because of deep scarring
- six hour bandage changes
- agonizing baths because of open wounds that just won't heal
- getting nutrition through a g-tube or having a liquid diet through a straw. not being able to open your mouth wide enough to bite into a hamburger or chew up a steak.
- constant stares, questions, and ridicule
- corneal abrasions
- loss of eye sight because of scar tissue
- severe malnutrition. never being able to gain weight. being undersized. having limited mobility.
- severe swelling/side effects of having to be on constant steroids
- having to use a wheelchair, because it's just too painful to walk
- never being able to play sports or even an instrument
- dying in infancy from infection and/or malnutrition
- dying in your twenties from skin cancer


I know it's easy to look at Jonah and see him thriving, and believe me, I'm thankful for that every single day. But there are so many kids out there who have it SO MUCH worse than he does. And his certainly isn't a walk in the park. We desperately need a cure.


THERE ARE SO MANY.





What you can do:
- pray
- share about EB, educate others
-  follow @EBResource on Twitter today and retweet their EB tidbits for the next 24 hours and earn $1 for DebRA, for every tweet, up to $2,500. include #ebfund in your tweets today because that earns money too.
- text BELLA (in remembrance of Bella) or TRIPP (in honor of Tripp) to 50555 to give $10 to PUCK (Pioneering Unique Cures for Kids) to further fund the research for the bone marrow transplants, our closest hope of a cure. see puckfund.org.
- pray (some more)


Thanks for loving our kids!

a few eb things

I just wanted to blog a piece of info, a prayer request, and a sweet video, all related to EB.


I got the following email from Karyn a couple of days ago. I thought it might apply to some of you.
There is a program called the Combined Federal Campaign that is open to all federal employees; each year they have a booklet of various charities that you can donate to via a one-time donation or a recurring monthly contribution over the course of a year.  DebRA is one of the organizations that is available to donate to, the charity code is 11990. 


I would also ask that you go over and meet nine year old Nicholas. He has EB and is day +193 after his bone marrow transplant. He is not doing well. His mom's latest journal entry:
Here's the update as of this week.... Nicholas has yeast infection in his lungs (and fungal pneunomia) and CMV infection in his lungs (CMV pneumonia) plus the yeast infection in his blood. The massive steriod dose that was started (to attack GVHD)  suppressed his immune system which most likely started the lung and infection issues. We had no choice but to stop treating GVHD and try to get all the infections under control. He is still in the PICU and intubated. At 1:00am each morning an x-ray is taken and we've seen alittle change but nothing significant. The next fews days will hopefully tell us something.


He could really use your prayers. You can visit his Caringbridge HERE if you'd like to read more and offer his parents some prayers and words of hope.


Also, I don't know if you remember me posting about a one month old baby, Lucas, who passed away over the summer from EB. His dad wrote this song and created this beautiful video in memory of Sweet Lucas, and I wanted to share it with you.



The song is called “Butterfly Child” by Rob Duskey and Friends and it is now on iTunes and Amazon mp3 with all the money brought in going to DebRA. 


Hug your family tightly, and don't forget what's really important. We are doing a Beth Moore study at church, and she was talking last night on the video about how we so often turn "irritation" into "tribulation" and complain and act like the world is falling apart and life's not fair and so on and so forth. And the world isn't fair and certainly there is plenty of negative you could choose to focus on, but don't turn your daily irritation into tribulation. Satan is prowling the Earth trying to steal your joy (and your soul). Don't let him win. Your God is Greater and Mighty to save.

kyle!

Kyle did great through transplant and went home yesterday. Please keep him in your prayers. I can't wait to see the results of BMT. Praying for a very very very bright future!

blue

I'm feeling a little blue tonight. I just got trapped in Harris Teeter for a while (have no idea how long) because of a bad storm and still had to eventually give in and go out. Soaked to the bone, loading groceries, afraid of lightening, no fun. That's not why I'm blue but the weather has kind of reflected my mood.


And I've missed my run the last two nights because of storms. It's not that I crave the running (don't be crazy) but I crave the time with my friend, Barbara, and I crave being outside. AND, I haven't run since Friday, and I just don't want to take any steps back.


But the real reason I'm blue and what's motivating the funktification of everything else...


We have lost three EB babies in the last five days.


The first was Lucas, one month old, with Junctional-Herlitz. His dad and I corresponded by email early last week. He passed away on Friday.


The second was Baby AJ, 14 weeks old. I'm not sure what type he had, but he died on Sunday.


And the third, Friends, was sweet Baby Malachi, two months old, the baby boy I had the privilege of getting to know and help with for a few weeks in April and early May. He was here at our local NICU, and his mom and I have regularly emailed back and forth and shared several phone calls since they've been home. They had just found out he was Junctional-Herlitz. He died on Monday morning.


When I think about the three families who have just had their tiny babies ripped from them, I think about the loss of our own tiny baby, and I think about all the things that EB takes away from Jonah, from our family and from countless other families all over the world, it makes me so angry. Why is it allowed to rob us of so much?


Run free, sweet babies. Our hearts are breaking, but your hearts are full, and your skin is whole.

No words...

I love Tripp and all these other EB Sweeties (and their parents) so very much.



http://thebutterflyfund.org

john and carson

This is John. He is an orphan with EB. He is in an institution (too old for the orphanage) in Eastern Europe.

This is his brother Carson. He is also an orphan and has EB. He is still in the orphanage but not for much longer. He will soon be institutionalized.

Carson just turned eight in April, and I believe John is a year older. 

This is their family. The Cannells from Lodi, CA.

Donnie and Karrie are an amazing couple. They are a "his, mine, and ours" family. Karrie had four children from a previous marriage, Donnie had two, and they have two together. Yes, EIGHT! To add to that, Donnie's 20-year-old daughter has EB, so they have lots of Butterfly experience. They have been in the process of trying to adopt Carson for a long time, but in the last few months found out he had a brother and of course, decided to adopt him too! The boys are currently separated and, needless to say, are living in conditions that are not exactly EB friendly. We need to get them home fast!

Get this - the Cannells are paperwork ready. Their final forms are in route, so all they are waiting on now is an appointment to go meet the boys for the first time. Here's the deal though, adopting both of them is even more expensive than it was going to be. We are talking $30 or $40 thousand dollars. They have $6,300. 

I know I've asked a lot of you guys lately. But I also know that if EACH AND EVERY ONE OF YOU who reads this clicks HERE and donates just five dollars, we can make a HUGE dent in their expenses. They are praying that God will do something huge, and I know that He will. And wouldn't it be cool if we could be a part of it? 

Please, for one day, if you have anything extra, give up your McDonald's or your Starbucks or your Chick-fil-A (pointing to myself on this one) or spend five less dollars at Target (again, me) and go give just five dollars. You can help change these boys' life and bring them home to their big, wonderful, eager, loving family.

Those boys deserve to come home. And that Mommy deserves to finally give her boys a hug.

Will you help them? Please? You can click HERE to make a secure donation through PayPal, and you can follow their journey HERE.

Thank you.

baby m

There is a new EB baby at our local children's hospital. It is the first one since Jonah was born. I found out about him on the Thursday before we left for vacation. He was less than 24 hours old and the diagnosis had not been confirmed. I knew it was EB, but since then, a biopsy has confirmed it. 


Baby M is adorable. He started out with blisters on his hands and feet but they are spreading up his arms and legs. His little bottom area looks terrible, but I have hope that it will improve with some TLC and a few Fuzzibunz. :) I took some supplies when I first found out about him but went last night to help with a dressing change. Matt took some more supplies this morning.


I cannot tell you all the memories that flooded me going back there. 


Patrice, park in the orange deck. Orange is the new purple. It'll give you the straightest shot and it's less crowded up there. Floor 6, remember? There's the waiting room. There's Erica at the reception desk. Can I go in? Buzzzzzz. Remember that that soap breaks you out. Use the hand sanitizer instead. Hi, Sabrina. Hi, Doctor Heather. Hi Brook. Hi Paige. Beep. Beep. Beep. Oh, that's Jonah's room. Oh, Hi, Baby M, in Jonah's room. There's my corner. That's my window. Hey, where's my chair? Beep. Beep. Beep. Aquaphor. Vaseline Gauze. I hate Vaseline Gauze. We're almost out of Transfer. They take so long to get things shipped here. Do you have non-latex gloves? Can I bathe him? Wow, it's impossible to wrap those fingers. He won't relax his foot. Oh my goodness, what are we going to do about that bottom? Hi, Sweet Baby, it will all be over soon. Can we get some morphine over here? Here, Sweet M, have some sucrose. It's okay, Baby. We're almost done. Wow, almost two hours and we only did his limbs. Beep. Beep. Beep. When have you last eaten, Mom? If you're tired of cafeteria food, there is a Panera across the street. You have to take care of yourself. You need to go where you'll have the biggest support network. You need to take a break. Eat. Pump. Sleep. Bye, Bye, Sweet M. When will you be discharged? Mom, this will get better. You'll adjust to a new normal. I know you feel overwhelmed, but you'll learn to be happy. Take breaks. Eat. Pump. Sleep! God is with you. Don't worry about all the what-if's. Focus on today. What are the victories today? He's beautiful. You can do this. Eat. Pump. Sleep. Pray! I'll try so hard to get here on Thursday. I'll send you that information. Call me if you need ANYTHING. 


Validated parking. Go straight to get back on the highway. Oh there's my exit. Hey, Matt. That was so so hard. I forgot how hard that was. Smell my hands. Don't they smell exactly the same?


So tired. Heart-broken for her broken dreams. 


Goodnight, Jonah. You're my hero.

our visitor

This is Vanessa.

She is our special visitor. I picked her up at the airport today, and she will be staying with us through next Monday. 

She's VERY serious about adopting an EB baby who is an orphan. I can't mention his name here until their home study is approved and she and her family can make an official commitment. She is here for "EB Training" this week. Their home study is a week from Saturday (on March 19th). If you could be in prayer for their home study preparations (preparing their home, forming a continued EB training plan, that they can get the required 10 hours of online adoption training in time etc.) and that his government will accept and approve them as qualified parents.


I told her today that she'll be WAY more prepared, experienced, and qualified than any of us were when our EB babies were born. I'm LOVING having her here and her eagerness and passion to learn the world of EB. And, oh my goodness, you should see how comfortable she is with Jonah (and how much he already loves her!). God is preparing her. It's so exciting to see his plan unfolding. 


Please be in prayer that if this is God's will and what is best for that sweet babe, that God's favor would fall on them and their preparations and that Baby will have a family by summer. 


As always, many thanks.

details on how to help anton

Oh man, I am being worked on here. I was just talking to Matt the other night about God calling me to something, but I just couldn't figure out what. I said something like, "I feel like he's given me the blog for a higher purpose than just, 'Jonah is doing well. We didn't do anything today. The End.'" And I know it's more than that, so I'm not trying to dismiss how many prayer warriors we've gained or the effect Jonah has had on peoples' lives or how God has worked through our struggles. But now, as things are becoming more and more stable, I just want to use the blog and the readership for more than just our day-to-day happenings... although I want to keep including that stuff too. Because it's still important. 


En-ee-ways...


I am committed to help advocate for Anton until we find him his Forever Family (or rather, until God leads them to each other), and I'm also committed to fundraising until he can come home. I feel a great Spirit led (I hope, anyway) urgency to pursue funds for Anton and help bring him home, wherever that may be. 


So a couple things:


1) I know everyone wants to help one way or the other, and I'm so thankful. I hope you can find a way, through the fundraisers we come up with or with an idea of your own to donate to Anton's adoption fund if you feel so led. His PayPal button is HERE or you can mail a check to Reece's Rainbow at PO Box 4024 Gaithersburg, MD 20885 (this is better for large donations, as they don't get hit with large PayPal fees). Make sure to include "Anton(15AAC)" in your "FOR" line.


2) I know not everyone is qualified to adopt Anton, so don't feel guilty if you are not in that place. Not everyone has space in their home or a hospital close by or can take on the time it requires to properly care for an EB child. Let's face it, as much as I would love to adopt him myself, I honestly don't know how we would/could care for both boys' needs. I already have help come in every day to help with Jonah's dressing change. I can't imagine having to ask for help for an additional two hours every day. (And dressing change is really the least of my concerns.) Plus, Anton will face many challenges due to RDEB that Jonah won't and he will face additional emotional and physical delays due to his circumstances. I'm not trying to talk you out of it, but please if you are considering, pray about it, contact DebRA or other EB Folks who can share their "reality" with you, and truly prepare yourselves for what his care, both physical and emotional, will entail. Believe me, whatever it is, it is TOTALLY WORTH IT.


3) If you are feeling like God might be calling you to this, please see these eligibility requirements and you can contact Larisa Ulinova at 215-264-3704 or larisa_ulanova (at) hotmail (dot) com with inquiries. Also, you can contact the folks at Reece's Rainbow or http://aboutachild.org, an adoption agency that partners with Reece's Rainbow.


4) I'm setting up a new blog, called Hope for Anton, where I will be adding fundraising opportunities through Thirty-One and Pampered Chef among others. Let me know if you have any fundraising ideas or suggestions or anything you'd like to "sell" with all proceeds going to Anton's fund. You can email me at momtobabyjonut (at) gmail (dot) com with any questions. I'm also going to be holding a "yard sale" online there at some point, selling some of my books and our nice, lightly worn, name brand clothing in hopes to raise some funds. I know that's kind of lame-o but here's the deal: I am not creative. I don't bake. I don't sew. I don't paint or build or make. But I like to read and I wear clothes. So there you have it. We all do what we can. 


I love you guys. You just don't know. I KNOW we can do this. Will you help spread the word? And go on over to the new blog, which currently has no posts, and become a follower or a Google Readerer or whatever you call it so you can get updates when new items/opportunities arise. 


Some may call this impulsive. I just call it RADICAL. :) 


"This is where we come face to face with a dangerous reality. We do have to give up everything we have to follow Jesus...The gospel does not prompt you to mere reflection; the gospel requires a response. In the process of hearing Jesus, you are compelled to take an honest look at your life, your family, and your church and not just ask, 'What is he saying?' but also ask, 'What shall I do?'"
- David Platt, Radical

funds for anton

I want to let you know that I am working today on getting the information on how to donate and what agencies to contact if you are interested in adopting Anton. He has a page now on Reece's Rainbow if you would like to donate immediately. I will also be working on organizing some set fundraising events and campaigns to raise money. But all monies will have to be donated through Reece's Rainbow eventually. It will be the only legal way to donate... which I think is good. People will know it's legitimate. 


I want you to know that I am praying and thinking about this all the time. I keep thinking the words over and over, "widows and orphans, widows and orphans, widows and orphans." This is something big and I feel a great sense of urgency to raise these funds as quickly as possible.


I'll give you more details later today (the mornings are kind of busy for us :) ). 


For now, here is the link to Anton's Reece's Rainbow page. He is the second listing and his PayPal button is there. Please feel free to donate there if you feel so led. I can't thank you guys enough. Your response has been amazing.

please help save anton!

The hospital Anton is in is trying to get rid of him. He will soon be transferred to a Russian orphanage and will lose his one-on-one care. There is no way he can get the bandage changes and have the kind of care he needs in the orphanage. Things are certainly looking down. Please share his story with anyone you know who might be open to adopting him. I'm committing to help with fundraising through the blog and any other way I can help once a family has committed to him. Anton has just celebrated his first birthday and is as cute as a button.

His webpage is HERE and his Facebook page is HERE. 


Please, please, please, do your part in spreading the word. I don't know if he can survive in an orphanage. 


(I may have given you some misinformation in my earlier post. I have seen different things from different sources, but the last thing I read said he was born by surrogate to TWO PARENTS who sent a nanny by private jet to pick up the healthy twin, leaving Anton abandoned in the hospital. It doesn't change anything (except that now I have to work not to hate TWO people), but I'm just trying to be accurate. Sorry for the error.)

tripp and anton

This will not be a "happy" post, but sometimes things that are really important aren't always happy. 


First of all, I'd really like to ask for your prayers for Tripp. Things are really not good. He's losing his vision in both eyes due to all the corneal abrasions he's had and resulting scar tissue. He struggles to breath and can barely stand up more than five minutes at a time, and that's on a good day. And that's with a trach. It seems with the eyes and the breathing, Courtney is running out of options. He's not gaining weight, and his mouth is torn to pieces. His teeth are also in terrible shape, and again, because of the EB and probable damage, there aren't many options. In addition to all of that, their family is having struggles in other areas, and it's just a hard situation. I was about to type, "How Courtney does it every day I don't know." But that's not true. It's because of love and because she would do (and has done) anything for Tripp. But having to watch him suffer and feeling so helpless wears her down. Please lift their whole family up in prayer.


Secondly, I don't think I've mentioned this here before, but my heart is heavy for another little boy. This is Anton. 

Anton was born by surrogate and sperm donor to a mother in Russia. The surrogate had twins. One twin was perfectly healthy. Anton had/has Recessive Dystrophic EB. His "mother" took home the healthy child and left Anton abandoned in the hospital. For over a year, he has lived in the hospital, never knowing the joy of family. He does have a nurse who cares for him, but it is my mission this year to help find him a home. 


Anton has had a history of malnutrition and his fingers and toes have already contracted. The last several months he has been at a more specialized hospital, and his care has been one-on-one. He's gaining weight, his labs are better, and he's eating heartily by spoon! (More than we can say for a certain someone I know... ahem.) He, according to volunteers and his primary caregiver, has a sweet, funny disposition and freely gives out smiles to anyone who shows him some lovin'. :)


My heart breaks for this little one, and honestly, I have thought long and hard about the possibility of adopting him ourselves. Unfortunately, I'm not getting the go ahead, and I don't feel we can take on his care too. But I so would if I thought there was a way. I'm not telling you to adopt him (but seriously, adopt him) but if you know of anyone who is open to adopting a special needs child, Anton would be a pretty special one. He could get much better care here in the states, and he deserves a Forever Family! If only he had a Courtney. (And on a side note, if I wasn't trying so hard to be like Jesus, I'd hunt down his so called "mother" myself and... well, never mind.)

You can follow Anton's Facebook page HERE and a website is set up HERE with his story and how to donate to his care. Please share his story with everyone you know. Let's find this deserving kiddo a home by the end of the year (or month!). Regardless, please pray for him too.

sweet baby elle

I've been meaning to get this up all weekend. I wanted to let you guys know that the EB Community has suffered another huge loss. Sweet Baby Elle went to be with Jesus this past Thursday evening. She was an 11 month old with Junctional-Herlitz EB who was undergoing the Bone Marrow Transplant. She passed away at Day +43. Please visit her blog HERE to read her story and offer her parents messages of love and hope. And please donate and raise awareness as you are called and able. We are so desperate for a cure. 

meet the Ringgolds (and Jonah!)

Hi Friends,


Something has come up and I need your help. 


Tim Ringgold (Bella's dad) emailed me yesterday and said that he, Ang, and Ali are coming here, to Winston-Salem, later this week. And Tim would like to have a get together between our two families and anyone else who reads either or both of our blogs and would like to come. It will be a great time of meeting one another, hanging out, and celebrating Bella and the love and support we've found in each other.


But we don't have much time! (Tim, you and your visionary spirit are KILLING me and my Type A/Planner personality... but I'll forgive you, this time.)


So, this coming Friday, October 29, please join us for a potluck dinner at Bolton Park Shelter at 5:00 (I'll probably be there a little early, and there's a playground right there, so feel free to come earlier). 


So...


What: a Potluck dinner celebrating Community and remembering Bella
When: Friday, October 29
Time: 5:00pm-7:30pm (or dark, whichever comes first)
Where: Bolton Park, large shelter


Here's what I need from you -
I have NO IDEA how many to expect. It could be 20. It could be 200. That's why I decided to do Potluck style, so no matter how many people come, there will be enough food. I'll plan on getting napkins, cups, plates, and forks/spoons. I need y'all to bring drinks, main dishes, sides, and desserts. 


Please email me if you plan on coming and let me know what you would like to bring. I just don't want us to get 40 Bundt Cakes and no real food, know what I mean?


You can email me at momtobabyjonut (at) gmail (dot) com and let me know. 


I hope we can see you there.

PS - If this doesn't work out and we don't get much response, we'll change it to BYOFF (Bring Your Own Fast Food) and everyone can just bring food and drinks for your own family. But I'd like to try the Potluck idea first, because dang it, we're The South, people, and that's just what we do. 


Looking forward to meeting as many of you as can come! Hooray!

meeting ella!

Last Friday, we had very special visitors. Ella and her beautiful mom, Katie, came for a visit. Ella has Recessive Dystrophic EB, and Katie was one of the first EB folks to contact us after Jonah was born. Katie has been a constant source of support and love (and a POSITIVE outlook) for us, and it was SO AWESOME to finally get to meet them. They were down here from DC visiting some family in Durham. 

We got to enjoy a great walk with the kids. It was a beautiful day. 

 Sweet Ella. Three years old with the vocabulary of a nine year old. :)

The four of us. (Jonah playing with Katie's earring... no concept of personal space.)

It's nice to spend time with someone who really gets what your life is like... not just the physical requirements of EB, but the emotional ups and downs of being an EB mommy. We didn't really have to do introductions or small talk. (I did cry a little bit, but that's kind of my thing. When I apologized for crying, Katie said, "Don't worry. Crying is my spiritual gift." Ha ha. I'm stealing that one!) We just got each other. And Ella is just as amazing as Jonah and Weston (an EB not-so-baby we met last year). The strength and determination of these EB kids young people (sorry, Weston) continue to blow me away.

We love you, Katie and Ella. Hope you come back down our way soon!

Bella

Anabella Claire Ringgold

May 27, 2009 - October 11, 2010

Sweet Bella passed away yesterday afternoon. Please carry her family in your prayers as you go through your day and upcoming weeks.

You can read about Bella here, on her blog, if you haven't already been following her story.

meet caroline!

If you have a chance today, stop by the Auction Blog to meet Caroline, a four-year-old EB friend in Illinois who also has Junctional Epidermolysis Bullosa.

Adrienne, Caroline's mom, has been a huge support and source of encouragement for us during this last year. She's always so positive and hopeful, and that's exactly what we need - HOPE. Caroline has probably been the closest case to Jonah's we've found, and she's doing GREAT!

Caroline makes us optimistic and excited about Jonah's future.

Make sure you stop by and read her story.

We love you, Provost Family!