Boo Boo Face - Day 3 (yesterday)
Boo Boo Face - Day 4 (today)
This crying wasn't from pain. Mean Mommy wouldn't give him the camera.
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We've had a rough couple of days, as you can see. Jonah will go all day not hurting his face, and then BOOM he has a little, normal, toddler fall or bumps into a corner or I have to pat his face to clean it, and all of his skin comes off again. The two on his forehead keep growing and filling up, so I have to cut them with suture scissors, which makes them look worse. His upper lip has opened twice today and bled like crazy both times, so that's no closer to healing. Ugh.
Tomorrow we leave for Matt's parents house. I'm excited about a few days away. We were going to go to this tomorrow night, but we may just do the drive through part now. Jonah won't know what he's missing and I just don't know that we can handle the stares and questions. He looks so incredibly rough right now, and there will be so many kids there. And kids ask questions... I'm so torn. Part of me is like, "Screw it. Forget everybody else and just give Jonah the experience." The other part of me is like, "Getting mean stares and comments and questions all night sounds miserable, and after this tough week, I just don't feel like I have the emotional energy to deal with it." I guess it's yet to be seen what part will win out.
Please keep praying. He has been much fussier the last few days. I'm sure a lot of it has to do with his face, but he's also throwing up more and seeming more mucusy, so he may have a touch of something. Matt has a sore throat, no voice, and is super achy, so Jonah may be picking that up too.
I don't like being down at Christmas time. :( Good thing tomorrow is a new day!
32 comments:
Poor guy! Praying for healing. Hope you all have an awesome Christmas! You and your family are amazing!
Poor Jonah! Safe travels to you. Enjoy your Christmas holiday.
Girl these pictures just show the world, or the part of it that sees your blog what EB really is. I had never heard of it until I found your blog. You have done a more than amazing job of keeping Jonah so protected. Its a wonder that his face doesnt constantly look like that. He is a toddler. Thats why they call it toddle! You are doing a super amazing job as his mommy. God bless. Praying.
Poor lil guy! Hope he heals soon and that ya'll have a very Merry Christmas!!!
Dear Patrice,
Many prayers for sweet Jonah's face to heal and not cause him so much discomfort.
I really hope you are able to relax and enjoy the holiday!!
Many hugs and prayers. Happy Holidays :)
Hang in there and stay positive...as you already are. You are so full of grace. Sending up prayers for quick healing. You're such an awesome Momma to Jonah! Merry Christmas to you and yours.
Praying for that sweet Jonah to heal quickly! Praying also for safe travels for you, and that your trip will be happy.
Hope you have a great Christmas!
Love from TX,
Laura
His face does look rough, but my goodness(!) all I see are those beautiful blue eyes in the second to last picture! I know your mommy heart aches to see him like this, but you DO do such an amazing job of keeping him safe! Enjoy your family and I hope you have a wonderful Christmas! We're praying for all of you...
That looks so painful. :( Poor guy. Ya know what... I've seen Jonah almost everyday since he's been born and I always see his blue eyes before any of the owies. He's such a beautiful boy, ouchies and all.
Sweet baby. We can't wait to see you guys. Love.
oh man, poor jonah. i hope he heals up quickly!
Aw, poor bug! Breaks my heart! Praying for him and lots of healing and soothing vibes!
BTW, I may have mentioned it earlier in a comment, but I was wondering if Emu oil is ok for EB? I had a bad reaction to a belly button piercing (dehiscence and infection) and used emu oil and it was just amazing how much it helped. We have a disorder related to EB (Ehlers Danlos, we are affected with a different collagen) and have somewhat fragile skin as well, although no where near the extent as EB.
HTH and hope he is better soon!
Praying! You do such a great job with Jonah!! I saw a segment on the news about EB the other night and immediately told the story of little Jonah :) He's a blessing! Stay strong! We all love you guys!
You are an amazing mama and I love all of you..merry Christmas to a wonderful family..prayers for all.
Love
Poor J! Hope he heals quickly and that you all have a wonderful holiday!
Sweet, sweet boy. I agree with the poster that said that all she sees is his beautiful eyes.
I know you didn't ask me my opinion but just in case... :) I would go to Santa's Magical Village and I would have a blast watching him experience all the sights and sounds. Who cares what other people think? I know it's easier said than done. For me the holidays are abouot making memories for my family.
Wishing you the best holiday season ever!
Praying for healing for sweet Jonah...my goodness, those baby blues still steal my heart vs. anything else I see. Merry Christmas, safe travels and let your heart decide for you on those lights, there is always next year!
Haven't commented in a long while, but I just wanted to let you know that we are praying for all of you, here in Washington.
You and Matt do a wonderful job of balancing protection and letting Jonah just BE. Obviously you guys have additional concerns, but truly, in the heart of the matter, you are more like "the rest of us" than you are different: we all worry about our little ones and want to protect them from as much as we can. I am not saying this to minimize the heartbreak, pain and worry that is unique to EB families, just wanting to let you know that when I read about your family what I see is that we have more in common than what is different.
You are a fantastic Mama.
God Bless. And Merry Christmas!
"Screw it. Forget everybody else and just give Jonah the experience." I like that option! Jonah is your world and the rest of the world is irrelevant. Let them know it. Trust me, I have experience with that!
With all my love for a very Merry Christmas and a Happy New Year. Uncle Chris
Had to stop by one more time to say I love that little fellow...these days Jonah is about the only reason I am smiling because I love him so much & know that Jonah is a miracle from God
Merry Christmas one more time
Poor little sweetie and poor mommy and daddy! It has to be hard to see him get such ouchy boo boos so easily. Praying for health and for a happy, fun Christmas for you all! There will come a time when he won't fall so much...hopefully soon!
Poor little fellow and mommy and daddy. I say let him do whatever in the world he wants to do (and you want to do) and give everyone the evil eye!
So, the hospital that is doing all the EB bone marrow transplants is really near our home- I saw this on one of our local news stations. Trully Amazing! I sure hope your Jonah is feeling great for the holidays! Merry
http://www.kare11.com/news/news_article.aspx?storyid=895663 Christmas!
I feel so sorry for Jonah. We'll be praying for healing. Wishing your wonderful family and Christ-filled Christmas!
Oh, that little face! Praying for your family from Wisconsin. Merry Christmas!" For a child will be born to us, a son will be given to us; And the government will rest on His shoulders; And His name will be called Wonderful Counselor, Mighty God, Eternal Father, Prince of Peace."
oh Patrice--I'm so sorry that his sweet face isn't doing well. I pray that he keeps it safe and protected somehow over the next few days, and that you guys are able to enjoy your Christmas without sickness!
On a side note--have you ever checked out colloidal silver for his booboos? Used for burn patients in healing and we use it in our house when someone feels sick :)
I have read this blog from the time Jonah was just 2 months old but rarely comment. I am a pediatic OT and love all that you share about Jonah. I think you should go to the christmas event , why miss out because of ignorant people. And why not reprint the letter that you handed out at halloween and pass it out when people stare, gives people a chance to be educated and saves you from telling his story a thousand times :) Just an idea . Have a Merry Christams! He is Beautiful boo boos and all!
I love you!! This makes me sad:(
I hope you guys have the best Christmas possible. Will be thinking of you as always.
He is beautiful! I love those blue eyes...they really talk!
Jonah is added to our prayer list.
I have been keeping up with you but just not commenting as much...I hate that Jonah might be in some pain. And I know it is hurting your heart so much and causing you more anxiety too. I have been praying that it will heal up soon.
As far as taking him to see the lights I was going to say if your heart says to go and people ask questions and stare then look at it as an opportunity to spread even more information and awareness about EB. I love what cow78girl suggested about passing out some letters like you did at halloween. That is a great idea. But at the same time, I can see how you just might not be up to that. I would guess at times it can just get mentally exhausting. But regardless of what you decide it is the right thing for Jonah because you are his mommy and you know what is best for him and you! I hope you all have a very wonderful and very merry Christmas!
My son has cerebral palsy and not a skin condition, but we still get stares and comments. If we carry him it's why we don't put him down and let him run around like his twin...then when he's in a mobility device people stare and point but say nothing. Honestly, besides therapy and dr appts I hardly go anywhere anymore just because I am not always up to being an advocate, ya know?
I miss the days of being lost in the crowd...not that that happens much with 7 kids anyways...LOL
Praying for him to heal quickly and for you guys as you endure the spotlight.
It's Christmas and I just wanted to say "Thank You" and that..
It's been a pleasure reading your blog this past year..
Hope you and your family have
wonderful Holiday and..
A Happy New Year!
Shirley H. From Singapore =)
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