The boys are doing well. Gideon turned five in August and Jonah is 8 and a half. DON'T FORGET THE HALF. Jonah's EB is getting worse, I'd say, although it's tough to measure that kind of thing. His arms and legs are pretty much a disaster all the time, and we're in a vicious cycle. Itch, Scratch, Blister, Heal, Itch, Scratch, Blister, Repeat. And of course, all of his wounds are in different parts of this cycle, so he's basically in rough shape all the time. He is still one of the happiest kids ever though, but I definitely think things are starting to get to him more. Not that things are significantly worse, but pain, tiredness, not being able to participate in everything he wants etc just seem to affect his mood more than they used to. But part of that is that he's getting older and moodier. And mouthier. :)
He and Gideon have a love/hate relationship like most brothers do. They can be the best of friends and the worst of enemies. Gideon is into all things nerf guns, wrestling, and super heroes. Jonah is all about NASCAR (more posts coming on that soon!) and still loves car shows, car videos on Youtube, and talking cars or racing with anyone who will listen.
DID YOU KNOW THAT WILLIAM BYRON WILL BE DRIVING THE 24 CAR NEXT YEAR?
Well, know you do. You're welcome.
We have just ordered a new tub for Jonah that I am super excited about. It is called the MicroSilk tub, and it should help his skin a lot. It has these tiny micro bubbles that can basically gently exfoliate his skin, fight bacteria in his wounds, super-hydrate his skin, and aid in healing. Several EB families have tried them with good results. I will try ANYTHING to relieve his itching. It should be here on Friday. I'm sure it will take us a while to get it installed and to reconstruct around it (I love you, Dad), but I'm so pumped. You can read more about it here if you're curious. I'll keep you guys posted!!!
We went to the pumpkin patch today, and it is always one my favorite places to get pictures of the boys each year. I love this time of year, and since it's finally decided to NOT be 85 degrees every day, maybe the leaves will actually start turning. We had a good time, and Gideon was especially excited about picking out at least one "punkin" of each color. "I want to carve one punkin and paint one punkin. Look at this red punkin mom. Ooooooh look! One with bumps!"
Here are the pics. Just can't believe how big they're both getting.
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| I call this one - "Take one more picture of me and see what happens." |
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| My hair was tickling him, and we got the giggles. |
I'll try to post soon about our TV and Nascar adventures. A lot of crazy (fun!) things have happened that I want to record here. Life is crazy! Thank you for still being here with us!
9 comments:
Great shots of your darling guys! Jonah and Gideon have really had growth spurts! The new tub for Jonah sounds promising. I hope it brings relief to his symptoms. I've added Jonah to my prayer list and will pray for healing and relief of his discomfort, and, yes,for improvement. I'm glad you blogged! Enjoyed your update!
So fun to see a post from you again! Wow the boys are really growing up! I thought Jonah was 5... man I hate how fast kids grow! Adorable pics :)
Look at those handsome boys!! I've followed along since Jonah was born and it's hard to believe he is so big! Will keep him and your family in my prayers!
My daughter was born just before Noah and I have been reading your blog since that time. I loved this update and a fresh reminder to continue to pray for him. Your family is really beautiful.
Love to hear how you all are doing! Prayers that the tub will help!
Was wondering how you guys were doing , pray for some comfort and nix😠on that itching.
https://www.nbcnews.com/health/health-news/gene-engineered-skin-grafts-save-boy-rare-disease-n818936
I happened to read this today and thought about you. I have followed your blog for a while.
I love watching your boys grow all the way from Germany.
I heard a fascinating article on NPR on medical advances in treating patients with EB and I thought of your family. I was directed to your blog years ago through Katherine's blog. I used to check in weekly but now that my kids are older and busier, I haven't been checking blogs as frequently. Hearing that article made me wonder how your son and your family were doing and I was so happily surprised to see that you had recently updated your blog! I'm sure the new procedures will take time and won't work for all the people with EB, but it's always so wonderful to hear that advances are being made.
Happy fall!
I used to read your blog and many others after Jonah was born, but I guess life and raising kids got in the way of blog reading and I eventually stopped. Earlier this week God put Jonah on my mind to pray for him and your family. I’m sorry he is going through a rough time right now. But it was also so nice to see the boy he is growing into and sweet Gideon too. When I was last reading you hadn’t yet adopted him yet. You’re family is beautiful and I will continue to pray for Jonah’s health and that you, Matt, would have peace and wisdom. 💗 Kait
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