we are loved

Jonah fell last week on the sidewalk at school and caught himself with his hands. It was bad and he took all the skin off his palms. He fell because he was skipping because he was happy. He is all healed up now, but for four days, he could barely use his hands, and for seven, they were bandaged.

After a couple of "good" days, he woke up this morning with a corneal abrasion unable to open his eyes. We spent the whole day in the dark and will probably spend the next two days like that as well.

So needless to say, it has been a rough couple of weeks in terms of his EB and the pain he has been in. BUT this is my Facebook status tonight and it goes for you guys who faithfully read this blog too... even though I only post once a month... :)

Although I HATE EB and all it has done to my Jonah the last two weeks especially, I am overwhelmed (and sporadically in tears) over how incredibly loved we are. To know you guys are praying for him, thinking about him, asking how you can help... it's so good. His Kindergarten teacher, Ms. Pabon came over this afternoon, after teaching 11 other kids all morning, to visit with him and bring him audio books (and a casette player because ours is in storage), Grandaddy brought us milkshakes and told him approximately 107 stories, his other Kindergarten teacher, Ms. Boone called tonight and let him chat her ear off for 20 minutes to break his monotony, and Mimi Marykay came tonight with a stack of books to read to him (by flashlight because we had to be in the dark) and spent a long time entertaining both boys. So as much as I hate EB, I think about how much we might be missing out on if we weren't forced to slow down and let ourselves be loved. It's an important thing. To ask for help, to let people into your life, to be real with each other. To be vulnerable. I'm thankful for the hundreds (thousands?) who love and pray for us. And I'm thankful to know it. Fully.

Eddie Vedder publicly advocates for EB research!

Several famous people are have been and are becoming proponents and public advocates for EB research. The most recent is Eddie Vedder of Pearl Jam. This is so amazing. Awareness means money means research means a cure. Check it out!

And this video and a short article were on Rolling Stone today too HERE.

What is so exciting about Dr. Tolar's work is that it could not only be the answer for EB sufferers but for sufferers of thousands of genetic diseases. How quickly could we get to five million if we just got the word out and everybody gave a little? I'm so thankful that Jonah was born at such an active and amazing time in terms of EB research. I truly believe I will see a cure in his lifetime. And I'm praying it's much sooner rather than later.

"Butterfly Girl" movie

I don’t know the right way to start a movie review, but I will say this. I just watched a documentary and I liked it. That’s not normal for me. :)

This past weekend I had a special opportunity to watch and review the movie “Butterfly Girl,” a documentary about Abigail Evans, an 18 year old girl living with Recessive Dystrophic Epidermolysis Bullosa. It was amazingly well done. The music was written and performed by her father (really good… kind of a folk rocky sound), and the cinematography was beautiful.

Abbie, at the time of filming, was 18 years old, and like most teenagers, ready for some independence. The whole film, while showing her struggles with EB, focused more on who she was and her dreams. I liked that. I think so much of the time, people tend to look at what they can’t do or what they won’t accomplish, rather than chasing their dreams. EB kids are limited in so many ways, but this movie focused on all the things Abbie could do and wanted to do, rather than her limitations. It gave me hope as an EB mom that Jonah will be able to do more than I ever expected. There were a couple of times in the movie that Abbie sat on a rock and on a metal deck railing, bandage free, and Matt and I were astonished. Those things may seem little to people who don’t live with EB every day, but it really is huge when your skin is so very fragile.

Of course I watched the movie as an EB parent, so watching Abbie with her parents and their special dynamic really moved me. Abbie’s dad is kind of rock-n-roll and “tough love” and her mom is super compassionate, makes her smoothies, and stresses out when she can’t be there taking care of her. In Abbie’s words, it is “the best of both worlds.” While her parents lovingly meet her every need, they also encourage her to be adventurous and to go out on her own. They are so supportive when she says she wants to go to college and go to California (from TX) on her own to be part of a research study. As she’s about to leave for CA, her mom is visibly worried, knowing this is the first time Abbie will be on her own for something medical like this. And that she’ll be a plane ride away. Although they both act tough for her, I could see in their eyes, as she walked away from them at the airport, exactly what I would feel if Jonah were walking away from me for the first time.

When you have been your child’s everything since the day they were born - when you’ve fed them, bathed them, tended their wounds, done their dressings, helped them go to the bathroom, changed out their g-tube, cried with them through their hardest and most private moments – how do you start to let go? Knowing it’s best but longing for them to need you like they always have. Wanting to protect them and do everything in your power to keep them safe, but letting them go, because you know that life is more about their happiness than their safety.

I really encourage you to see this movie and if it comes to your area, it is more than worth your time. Abbie is amazing and her attitude is so positive and upbeat. I pray for Jonah, all the time, that he will not become angry and cynical, but that he will love life and live it to the fullest. Abbie gave me hope.

Matt and I have always said that, if Jonah wants to do or try something, we will do everything we can to empower him and help him do it. And then he can weigh the risks and decide if it’s worth it (maybe no tackle football though). :) I’m hopeful that he can have a life full of adventures, dreams fulfilled, and happiness in who God made him to be… whether he has 20 years or 80, I pray he lives them with hope.

Matt and I will be going to Durham this Friday for the Full Frame Documentary Film Festival, where "Butterfly Girl" will be showing. There will be a Q&A with the film makers afterward, and we would love for any of you, who can, to join us. It's worth taking your lunch break to come see. I promise.

Here are the details:

Friday, April 4 at 1:30pm
Carolina Theatre – Cinema 1
309 West Morgan Street
Durham, NC 27701

For ticket information, click here: http://www.fullframefest.org/passestickets/tickets/

Feel free to email me if you decide to come. Would love to come say hi.

To learn more about Butterfly Girl, visit: http://www.debra.org/ButterflyGirlMovie

i was here

Thanks to my friend and amazing EB advocate, Christie Zink, for this beautiful video. Amazing work, as always.

Jogging for Jonah - we need your help!

Hi Friends. Jogging for Jonah is quickly approaching, so I just wanted to make sure those of you who aren't on Facebook know about it. It will be May 4th at Tanglewood in Clemmons. There will be a 5K and a 1 Mile Fun Run. Walkers are welcome at both, but we ask if you are walking and pushing a stroller in the 5K, you try to stay to the right so runners can pass. 

We are desperately needing business sponsors, volunteers, and donations for our raffle and race prizes. You can also just make a straight up donation if you're not local but would like to help. All proceeds go to DebRA.

Even more than the money, I just want us to get the word out about EB and have tons of people come out and have a great time, celebrating God's goodness in Jonah's life and fighting for a cure. If we all do a little, we can make a huge impact.

I don't think I've shared this here on the blog, but this conversation happened a few weeks ago.

Me: Jonah, you think you might get married someday?

Jonah: BUT I can't get married with bandages on.

Me: Why not, Buddy?

Jonah: But I don't want to have bandages when I'm a grown up.

Me: Well, baby, you might always have to wear bandages.

Jonah: (tearing up) But I don't want to have bandages anymore.

Me: Well, I don't know Buddy. But let's just start praying now that you won't have to have them when you're older. Maybe God will heal you.

Jonah: (sadly) Okay, Mom.

I hope and pray that my sweet boy can grow up and get married (if he wants to) without his bandages. Although I know an ultimate healing will come in Heaven, I hope and pray he can know a life without boo boos and pain here on Earth. He was born at a good time, and there are huge strides in research happening. I pray things move quickly and Jonah will see a cure in his lifetime!

Okay, I'd love to have you there or would love your support if you're not local. It means so much to us how y'all have wrapped your arms around us since the very beginning. We appreciate you. 

I'm going to give you a list of direct links here to make it easy.

To register: 

https://secure.commonground.convio.com/debra/2013joggingforjonah/

To volunteer: 

http://www.joggingforjonah.com/how-can-i-help.html

To buy a t-shirt (if you are registering to walk/run, a t-shirt is included in your registration fee):

http://debraofamerica.bigcartel.com/product/jogging-for-jonah-t-shirt

To be a business sponsor: 

https://secure.commonground.convio.com/debra/2013jfjsponsor/

To create your own fundraising page: 

https://secure.commonground.convio.com/debra/joggingforjonahpfp2013/campaign.html

To make a monetary donation, you can use my fundraising page:

https://secure.commonground.convio.com/debra/joggingforjonahpfp2013/project.html?personalFundraisingProjectId=a0qA0000002HnLGIA0

To donate a raffle or race prize:

Email my friend, Jenn, at j4jraffle (at) gmail (dot) com.

To see all of this info in one place, visit http://joggingforjonah.com.

Thank you all so much!

Patrice William's Interview about EB from deric roger cook on Vimeo.

i miss my sweet baby gabe

Thanks to my EB Friend, Sara, for such a beautiful tribute.

To Bella, Leah, Garrett, Gabriel and all the other EB Sweeties we've lost.



Text "BELLA" or "TRIPP" to 50555 to donate $10 to research for a cure.

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!

No words...

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



http://thebutterflyfund.org

the big reveal!

A message from Katie. Auction Site HERE.

The BIG Reveal!!
Sunday, February 20, 2011

Today's the day!  Tonight at 7:30PM EST, you will start to see auction items appearing one at a time at the rate of *about* one item per minute.  Over the course of more than 2 hours, you'll get to see almost all of the awesome items that have been donated.  There will be a few more items and gift cards added in the next couple of days, so keep your eyes peeled for that. (If you donated an item and you don't see it, or there is an error in the post, please email me at jonahsebauction@gmail.com.  I tried to double check for errors, but Patrice and I are only human and there are a lot of items. :))

Also over the next couple of days, you'll see a post that covers all of our legal jargon, as well as a bidding tutorial to help you prepare to bid on your favorite items.

Currently, all of the listings are locked.  Actual bidding on items does not start until Thursday (2/24) at 8pm EST.  Just before the start of the auction, all the posts will be unlocked so you can place your bids.

I hope you are as excited as we are.  This is going to be amazing.  I just know it!

Thanks for being awesome.

Katie

grrr

It is likely that Anton cannot be adopted by someone without "direct EB experience." Let me get this right, Judge, you will most likely deny this family because they don't have direct EB experience, but you're fine with Anton being kicked out of a medical facility with one-on-one care and put into an orphanage where the staff to child ratio is 1:20? Yeah, you have his best interest at heart. Sure you do.

Y'all I am so so angry that there is a family out there wanting to bring Sweet Anton home, and so many obstacles stand in their way. I know that God is in control, but I want control of this so badly I can barely stand it. Will you please pray? Pray for Anton's family, whoever they are, that all the details will come together and it will all work out. Or that if he's supposed to be somewhere else, God will reveal that family and quickly. I'm so terrified he's running out of time. One caregiver to 20 children is not enough. Especially when (at least) one has such demanding needs. If something happens to that sweet boy because he gets stranded in an orphanage when there is a family desperate to have him... so help me, I'll go crazy. This is NOT right.

(I should not let myself get overly tired. Forgive me. Tomorrow is a new day.)

a giveaway!

Speaking of getting free stuff (oh we weren't... well, anyway) head over to Jonah's EB Auction Blog. Help us advertise the auction and enter for a chance to win a $20 gift card to your and my favorite store, The Target.  Get the details HERE.


Sorry to bombard you with links... but not really, cause all this stuff really excites me. Seriously, I'm about to pee my pants. You're welcome.

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.

boo boo face update

Day two of boo boo face. He slept peacefully last night but I could tell he had rubbed his nose at some point, as it was pretty bloody. I knew he would look pretty rough today but things were scabbing over well... until... he was playing in the kitchen and bumped his nose into the cabinet, ripped off what had already scabbed and also the rest of the skin that had been okay. He also added another forehead blister to his collection. Bummer. This whole toddling thing is killer.

Then, I tried to put some ointment on it to help it heal faster, but all that did was soften the scab on his cheek and so that's raw again too. Sigh.

We're pretty sad about it, to say the least, but he always heals, and this too shall pass. He has acted fussier today than usual, so I do think he's had some pain from it. But he did great during bandage change and I didn't have to redrain anything on his face, so that was awesome. He does NOT want me to touch it. I probably shouldn't have, but I put some Bactroban on it tonight to try to get it to scab over more quickly and I'm keeping him on Ibuprofen. Poor Buddy. I just wish there was a way I could wrap it up and protect him from himself. But Matt and I decided long ago that we'd rather him live and get hurt than not live. We protect him the best we can and we pray for mercy and healing to fill in the gaps. A boy's got to explore!

The good news today? THESE SHOES!

Y'all would not believe the shoes I have tried to get on Jonah's feet. I've tried Pedipeds, Preschoolians, Crocs, Stride Rite and on and on. The ONLY thing he could wear was the Converse One Stars, but we had to completely unlace them, shove his foot in (to the point where he was often in tears), and then relace them. Because of all the bandaging on his foot (three layers), nothing has been wide enough or had a deep enough toe. But these? THESE ARE AWESOME! They are New Balance Extra Wides and they slip on like a breeze and the velcro actually goes (almost) all the way across. I ordered him a size 6, which are too long but will go on, so I just ordered some 5.5's that I want to try. I hope they'll go on too! Either way, I'll keep the 6's and use them even if they are too long. Thank you, God, for REAL shoes that will go on easily!

Thanks for all the prayers for Jonah. We feel them. So far his lip hasn't opened back up, so that is great news. Please pray for his sweet nose. It was so raw tonight, it wouldn't even hold any cream. :(

As always, many many thanks!

we're still here

I'm sorry I haven't updated lately. We've been busy with little things and I just haven't blogged about the day-to-day.

Matt's parents came into town Sunday through Tuesday, we went to Shaina's choral concert on Monday night, and went to a Bible Study/Christmas party tonight. It's been a good week, but we've mostly been staying at home during the day. It's been so cold and wrestling a thickly wrapped EB kid in and out of a coat is a pain in the you-know-what. 


Things are good. Jonah is stable. Life is stable. We are happy. Thank you so much for your continued prayers and love. I know Jonah and all the other EB Sweeties you pray for are so thankful.


Please keep Charlie in your prayers. He will soon begin the bone marrow transplant. We've lost four out of fourteen of our babies, but several of the survivors are showing great improvement. It's a scary but exciting road. You can follow his site HERE and it will always be on my right sidebar. I hope you got to watch the TLC special last night or have plans to watch it in the future. It was really amazing. 


Please remember who we're fighting for, and if you are considering end of the year donations, please consider DebRA or EBMRF. 

EB on TV!

UPDATE (again): I know I keep adding stuff but just saw this article on Payton. Read it HERE. He gets to go home on the 28th. Months earlier than expected!


UPDATE: Wow. That was amazing. If you missed it and are interested, it will show again at 1:00 am and again on 12/19 at 8:00 pm and 12/20 at 1:00 am. (Thanks, Jackie!) Some of you are asking if Payton has a blog. He has a CaringBridge site HERE and I also always have it on my right sidebar. Thanks so much for caring!


TLC will air a special documentary tonight, called "My Skin is Killing Me," which will be following Payton (on my right sidebar) who recently underwent the experimental bone marrow transplant for his EB. It will show at 8:00 pm EST. Set your DVR's!

new brenner site!

The new Brenner Children's Hospital (our hospital here in town where Jonah has been/is treated) website is up. I don't know if you remember that I posted about agreeing to share our story (you know, the appointment I forgot about) on the new site, but we did. And it's up!


You can see it here.


And to get back at a later date, just go to http://brennerchildrens.org, click on the about tab, and then the link to the patient testimonials is on the left-hand side.


As always, thank you for continuing with us on this journey. We have received many blessings these last 20 months, and Brenner is way up there on the list of reasons we're thankful!


(An aside: I would not be able to talk if I did not have hands.)

fun fundraising opportunity

Hi Friends,

I need your help. An EB/Internet friend of mine is doing an incredible fundraiser for United Survivors with Epidermolysis Bullosa. United Survivors with EB is a nonprofit organization, run mostly by folks with EB, whose mission is to "provide services that will assist people with EB in becoming more self-reliant through social, cultural, recreational, rehabilitative, educational and occupational opportunities. We value self-reliance because it inspires individual productivity, builds self-esteem, stimulates human happiness, and heals the dignity of the soul. These benefits particularly enable people with EB to not merely cope, but to rise to a position where they can succeed independently, help others to do the same, and contribute to society in worthwhile ways."

So Chris is this friend of mine who is doing the fundraiser. Chris does not have EB. But he was at the Twin Towers on September 11, 2001. When the buildings started to fall, Chris hid under a car for protection. When he came out, all the cars around him were flattened. Why had he been spared? He knew his life would never be the same.

Fast forward two years, he found out about Epidermolysis Bullosa through a little girl named Grace (http://ourgrace.org), and decided that he would dedicate as much of his life as he could "to all the Butterflies of the world. Their 9/11 is every day." Since then, Chris has done so much to raise EB funds and awareness. He was integral in creating a social networking site, that I am proudly a member of, just for EB sufferers, their friends, and family. It is an amazing place of discussion, support, and understanding for all those fighting this nightmare that is EB.

Well now, he's at it again. For EB Awareness Week, which is the last week of October, Chris has agreed to do any dare (that is "legal and tasteful, yet embarrassing") to raise money for USeb. You can go to his fundraising site HERE to come up with a dare for him or to vote on one or more of the dares that are already there. Whichever dare gets the most money is the one he will carry out. You have to donate to submit a dare or to vote.

Will you consider voting for one of the dares or coming up with your own? He's specifically trying to help USeb reach their goal of "setting up a house where adults and older teens with EB can live and learn how to become independent and self reliant. The house will be staffed by adults with EB who have already achieved this level of living." Sounds pretty incredible, huh?

If you go and donate, whatever amount you can, come back here and comment. I'll give away a $20 Target gift card to one random donor, but make sure you comment here so I'll know. Please don't comment on this post unless you donate. (And I'm sorry it's not more than $20, but $20 to the Greatest Store on Earth is pretty much as good as $100 to anywhere else, right?)

So go HERE to vote and then come back here to leave a comment when you're finished. I will close comments this Saturday night (the 18th) at 9:00 pm, Eastern.

Happy voting (and giving)!

Comments are now closed.

a whole lotta random stuff

Crazy after-nap hair from yesterday.

"Excuse me, Mom. I need to make a call."

"DADDY! Guess what? I have cuh-RAZY hair!"

(I don't place him in front of this door for the light, by the way. This is seriously his favorite spot in the house, and he crawls there and spends 20 minutes at a time playing and looking out the glass door. But the lighting is really good too... an extra perk!)

Jonah stood up on his own for the first time today. He's stood up by pushing up on something low (namely us when we're lying on the floor next to him), but today he pulled up to something higher. He's still not really using his hands to do it, but hey, it's a start. BIG BOY.

He was very happy about it, as you can clearly see.

And then he needed to take a rest and chill on his wobble penguin. All that standing up was hard work.

And I just thought this one was cute.

Speaking of cute, Courtney posted some ADORABLE videos of Tripp today. You can see them here, but I'm going to share this one, because you will be a better person for having seen it. Warning: your heart may just explode from the cuteness.

And something completely random - I love this blog. Katherine linked to it on her blog earlier in the week. It's a lady who dresses up her baby and creates scenes around her while she sleeps and then photographs her "day dreams." I know that sounds a little strange, but it really is amazing. Here's one of my favorites.

Oh my word. You should definitely stop by. There are tons of other cute ones.

And in the news today -

A USA Today article on the BMT transplants HERE.

A Star Tribune (Minneapolis) article HERE.
A Bloomberg Businessweek article HERE.

A write-up on the U of M site HERE with a great update on four of the patients HERE.

And a publication of the results HERE, in the New England Journal of Medicine.

(Thanks to those of you who sent them to me.)

Hopefully all of this being publicized will get more interest and funding. It's an exciting, yet terrifying, time for the EB community. Thank God for doctors and researchers who care enough to look for cures for the most rare diseases. Our kids need help too.