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!
30 comments:
"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. "
And that, my friend, is just one of the reasons that you are an awesome mom! (I have a hard time letting my kids just be kids - but you have to!)
Yay for the shoes! I am SO stinkin' excited about the shoes! And glad to hear that Jonah is tolerating these new boo-boos ok. Praying for speedy healing.
I have been reading for a loooong time, but never commented...seeing these pictures though just broke my heart. I took forgranted something as simple as my son being able to take a small fall without worrying too much about serious injuries. I cannot imagine having to face toddlerhood with the extra worry about something that should be a given in life - skin. Jonah is in my prayers nightly, and I will say an extra one tonight that his face heals up quick. Poor baby...
poor poor baby - poor poor face!
:(
Bactroban - very smart idea!
Letting him LIVE - best decision EVER!
Love you guys!
J
Poor sweet boy! I'm so sorry he has these boo-boos on his face. Praying that they won't bother him too much and that they heal quickly.
Praying also for Tripp and Daylon.
Hope sweet Jonah has a good night and that you can rest too!
Love from TX,
Laura
I just see the smiles and personality in that face. Hope tomorrow is better for him with no pain ... and fewer stumbles.
I've read your blog since Jonah was born but rarely comment. I just wanted you to know that we always pray for him, but especially now for his boo boos on his face. Even with the boo boos, he is just the cutest little boy- seeing his pictures makes my heart smile:). You and Matt are doing an amazing job- hang in there. Have a very Merry Christmas with your precious Jonah!!
What a handsome little guy, boo boos and all! You have such a wonderful attitude. Praying that Jonah heals quickly.
Blessings from WA.
Praying Jonah heals soon!
For what it is worth, you may want to check out Soft Star Shoes.
www.softstarshoes.com
They custom make shoes for no extra fee. They have worked well for our son!
Praying for precious little Jonah this morning. I hope he feels better soon!
I am so sorry that his face is so sore, but glad that you guys do your best to let him explore!
On the shoe front, here are a couple other options (not sure how small they come in, he might not quite be into them yet). they are designed for children who wear the plastic braces (afos). So they have more space, and removable liner pieces so that you can adjust the amount of size in the shoe.
http://www.keepingpace.com/
http://www.hatchbacksfootwear.com/index.htm
even though he does have have a boo boo on his face he is still such a cutie!!!
I second,third, etc all the other comments..toddlers will explore, investigate, get into everything as their curiosity grows. Unfortuneatly, they have accidents but I am so glad that you & Matt decided to let him live as normal a life as possible. His pictures do not show him being in pain, but I am sure you see that part. Jonah is still a handsome bright eyed boy looking for his next adventure. Give him lots of hugs & kisses..lots of prayers for healing & comfort are being sent your way.
LOVE THOSE SHOES!!!!!!!!!!!!
MERRY CHRISTMAS & MAY GOD SEND MANY MANY BLESSINGS YOUR WAY.
LOVE YOU.
Jonah is always in my prayers but I'll add some extra in for his new owwies. Awesome that you found some workable shoes.
Oh sweet Jonah! You are ever in our prayers. Heal quickly my darling! You have some awesome parents who know you have to let go and let a boy live. That is so hard, no matter who the parents are and who the kids are! On the shoe front, we have had TWO podiatrists and a pediatric orthopedist tell us that New Balance shoes are the best. Not sure if New Balance pays them to say this or not.... However, we have foot issues too and need a wide toe area and lacing area. New Balance always has something that works for us. We have found that lacing ones are easier to manage than velcro but not sure when they start making them with laces. Good luck to you and I see others have left a few more places to try in the comments so God is good! Jennifer in Southeast, NC
Sending prayers for him to feel better and to heal fast.
Tina in NJ
Bella's friend
Seeing his boo boos makes my heart hurt. Poor boy! Praying for a quick healing for him.
He is a blessed little boy to have you and Matt as parents! "But Matt and I decided long ago that we'd rather him live and get hurt than not live." Such beautiful faith!
Glad you found some shoes that fit!...and are pretty awesome looking to boot!
Blessings.
Our child has to use braces on her feet, so we have to find "bigger" shoes. I don't know if these shoes would work but these are designed to go over orhtos (maybe it would work for bandages??)
http://www.hatchbacksfootwear.com
You are doing a great job with Jonah!!
Oh geez, Jonah's poor little face. My heart just broke in half seeing those photos and wishing I could just kiss him and he would magically heal. So sorry that you have to continue to go through this. I'm always praying for your sweet little man and I hope you all have a very Merry Christmas. No matter what is on his face, he is absolutely adorable and I will always love his beautiful little eyes. Hang in there and I pray for quick healing on these latest boo boos.
jonah looks adorable, as always, booboo face and all! this too shall pass!
Patrice, has anyone suggested Hatchbacks footwear? They are designed for orthodic wear, but are fabulous because they are rear entry and wide.
http://www.hatchbacksfootwear.com/index.htm
By the way, I'm in no way affiliate with Hatchbacks, just a long time reader who has purchased the shoes for my shoe-hater and loved them!
Looks like I should have read all the comments before I suggested Hatchbacks! LOL
Poor, sweet Jonah yes the toddler stage can be a nerve wrecking,and I feel so bad for Jonah praying for a quick healing to his boo boo's.
I haven't commented in a long time (or ever maybe?) But I have been following your story since Jonah was born. I am praying that his sweet little face heals quickly :)
I have terribly wide feet, and I usually buy NewBalance when I need a new pair of tennies :)
So glad little Jonah has shoes that slide right on, and fit his feet! It's the small blessings in life, right? :)
Sweet little trooper.
Continuing to pray for his speedy healing.
Love you Patrice! Your being a great mom! Merry Christmas to you and yours! Give that sweet boy a kiss from Dothan, AL!
Still keeping a check on all of you even though I don't comment much anymore. But just know you all are continuously in my prayers every night. Wishing you all a Merry Christmas and Happy New Year. Enjoy Jonah I am sure he will be an excited little boy Christmas morning and such a joy to watch.
I'm praying for you now....you are a precious mama and an amazing daddy too. Jonah is a darling boy...so loved and always has a sparkle in his eye! You love in amazing ways.
I have sent my Christmas donation of $1000 off to help raise awareness and fund research for EB. My dad was also featured on the radio tonight to discuss where the donation was going. Bella, Jonah, and Tripp were all mentioned on the air during the 5 o'clock news hour. Thank you for sharing your journey with so many!
Can I ask a huge favor of you? There was an announcement on one of my adoption boards about an 11 month old baby boy with EB. If he doesn't find a family to adopt him, he will die due to lack of resources in caring for him. Would you please post the following on your blog in case anyone can open their heart to him? Singles can adopt him, too. This is what was said about him:
URGENT NEED!!!!! This is an international adoption. Tony has a sad and tragic story. His mother was hired by a family in another country to be a surrogate mother. She had twin boys in January of 2010. One of the twins, Tony, was not the perfect baby that his parents had expected. He was abandoned by his biological parents and his surrogate in Russia while his healthy twin sibling, went to live with the biological parents. He has a diagnosis of epidermolysis bullosa. No one knows how this baby who has so much pain has survived. He has never been outside of his crib and thanks to some volunteers with huge hearts, he now has some toys to look at. He has a nurse dedicated to managing his care thanks to generous donations. Psychologists say that Anton is a very smart, calm and an incredibly patient boy. He watches adults come into the room and greets them with a smile despite the fact that they often cause him devastating pain changing his bandages. Tony can’t stay in the hospital forever and he will not have a future where he is. If he gets sent to an orphanage, there will be no dedicated caregivers and he likely will not survive. This blonde haired blue eyed angel desperately needs a family to love him and offer him the medical care that he desperately needs. We have received a $5,000 grant to assist with the cost of his adoption. If you would like more information on how to give Tony the loving family he needs, please contact Kids To Adopt by email at kidstoadopt@yahoo.com or by phone at 360-695-1704.
Thank you!
Merry Christmas and I do hope that Jonah's face heals without complications. It's not shallow of you to miss having beautiful holiday photos of him, just motherly.
I was reading your blog and I am so sorry about the fall Jonah took. I will be praying that the Lord heals his face and be pain free during this time. I know how bad it makes you feel when our children get hurt when we are right there. You are a great mom and I pray that you feel Gods comfort for you. I love the shoes and glad you found something for him. Have a Merry Christmas to two wonderful parents and Jonah. Also, praying for the other little boys and Leah's mom.
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