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.

hopeful

Today we heard of an amazing breakthrough that gets us one step closer to a cure for EB. I hesitate to use the term "cure," as that word just seems too good to ever be true. Not that I'm trying to be negative, but it just seems all the treatments and options up to this point have had too many side effects or risks for Jonah, considering how "stable" he is at this point.

But still, THIS IS BIG. To read the article, click HERE.

In a (hugely over-simplified) nutshell, Dr. Tolar has taken Charlie's own malfunctioning cells and basically taught them to repair themselves. His cells, still in a lab, are now creating Collagen VII, when before they didn't. Essentially, Charlie can receive back his own corrected cells, eliminating the need for chemo and the risk of rejection, two of the biggest things that make the current bone marrow transplants so so risky. Charlie has RDEB, a different type than Jonah, but if this works, I'm certain they will expand it to Junctional kids and other types of EB. 

We are praying that this will be our cure. Will you pray with me? 

Photos of my sweet Jonah taken at bath time tonight. (And he is one of the "good" ones.)

In the morning, LORD, you hear my voice; in the morning I lay my requests before you and wait in expectation.  
- Psalm 5:3

jonah update

I don't have the time or energy to blog tonight, but I wanted to let you do that Jonah is doing great! He started peeing regularly on Monday, and hasn't had much pain since then. He seems to have healed okay (without scarring closed) and is going around saying, "I all better now."

And while we're talking about bathroom stuff, Jonah was passing gas today and said, "I tootsing!" Ha ha ha! I love that kid.

i hate you, eb

You know what I said on Monday? I said, "Jonah's skin is the best it's been in his entire life." And I actually wondered and hoped for a moment that he was outgrowing his EB. I am so stupid.

I should have known.

Yesterday morning he woke up with his little man part blistered over. Like where his pee pee comes out. Closed off by a blister. He is holding his pee for as long as he possibly can and then when we finally convince him to go, he is screaming in excruciating pain. And his pee is coming out at a 90 degree angle, so he's peeing all over the walls, the floor, himself. He is in so much pain when he's using the bathroom. I've been in tears with him.

And how long will this take to heal? Every time he's going pee pee, he's reopening the wound. This is so crazy. It's one of those times I'm asking myself, "This is all a bad dream, right? Something so horrible can't really exist, right? This has got to be some kind of cruel joke."

I am so angry. I don't understand why God allows this. Why doesn't He fix it?

I hate you, EB. You are of the devil, and I hate him too. You are both evil and full of pain and suffering and death, and I can't wait until Jesus comes back and you both rot in Hell forever.

Please pray for my Jonah. My heart is breaking for him. Not being able to help your child has got to be one of the worst feelings ever.

i can't think of a title

Nothing much new to report. Jonah's bottom is looking some better. It's now healed over enough that I'm not having to use the stomahesive powder, as I can get the creams to stick on their own. Still a long way from healed, but an improvement. I found about three new little blisters on his butt cheeks today, but hopefully they won't grow anymore now that I've drained them. This heat right now is killer. I will not even let him step out of the house unless there is an errand that we just have to run. We will have to get out tomorrow, but today we didn't leave the house. I can't believe it's this hot already. What are we going to do??? Grrr. Contrary to popular opinion, summer sucks.


I think Matt and I are taking off a night from organizing tonight to watch our Netflix movie. I said, "What is it?" He said, "Hereafter." I asked, "What's it about?" He said, "It's Matt Damon." Alrighty then. Nuff said.


Oh, I wanted to point you to this post about John and Carson from "No Greater Joy Mom". She gives a great summary of their story, has a chip-in where you can donate, and is offering a Nook Color to one donor. Pretty sweet! Just in case you need a little extra motivation. :) I did receive two checks in our PO Box today for the Cannells. Thank you so much! If there are those of you who prefer donating by written check, please make it out to Donnie Cannell and send it to our PO Box (right sidebar) and I'll be sure to pass it along to them. Thank you guys so much!


I wish I had some cute photos or something to post, but we have literally done pretty much nothing all week. Oh well. There are certainly worse things than heat. At least we have an air conditioned house to keep him safe. I'm thankful.

today

Thanks to those of you who voted for Chris's Dare to raise money for USeb. I know several of you donated but didn't include your name in the comments. Thank you to you too. From those who did leave a comment, I'll pick a winner tomorrow.
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We haven't done much today. Jonah took a pretty good spill this afternoon and hit his gums, lips, and one cheek on the bottom corner of our TV stand. I was right there, saw it happening, and just couldn't get my hands around him in time. He cried. I cried. He bled. His cheek, upper gums and inner and outer upper lip are very swollen and blistered. He won't let me look at it. He acts okay though, so we'll just see how it's doing in the morning. This learning to stand/walk is such a scary stage. I don't think this fall would have hurt a non-EB child very much at all. He's so brave though. I took him out on the deck to get him calmed down and he was attempting to blow bubbles and mooing again within ten minutes. He's my hero.

I've been distracted this week from my book and Bible reading and worship, so I'm headed to do that now. I am constantly amazed at how I put everything else first, even when I KNOW what I should/want to do and what God desires from me. For what I want to do I do not do, but what I hate, I do... For I have the desire to do what is good, but I cannot carry it out. For what I do is not the good I want to do; no, the evil I do not want to do—this I keep on doing. Now if I do what I do not want to do, it is no longer I who do it, but it is sin living in me that does it. Satan knows when you are on the brink of coming Home. But I won't be stopped. Tonight, we regroup. :)

I have a little speaking part up on stage (in front of two to three hundred people) tomorrow. Nervous would be an understatement. But I'm confident that God will give me the words (that I've supposedly memorized) and give me the peace to get through it. I'm excited about the new series coming up, which is something along the lines of honestly talking to God. I gotta say, it may hit a little too close to home. Bring it on.