Thursday, April 9, 2009

all is well

All is well. The ENT listened to Jonah and says that he's moving air very well. He's not laboring to breathe at all, and he said he's not concerned at all. He says that he's assuming it's just the result of some blistering and inflammation and that with all he's probably got going on down there, it will probably come and go throughout his infancy at least.

He says he doesn't want to send a scope down or take him to the OR for a lower respiratory exam unless there's a reason. And right now, there's no reason. :) We'll see him again in two months just to make sure things are still okay.

He says that if things start to go south, it would not be something immediate, but something that would happen over the course of a few weeks. He described the sounds we would hear and said that they wouldn't come and go, but that it would be constant, would get progressively worse, and there would be no micro-analyzing - it would be VERY obvious.

Thanks for praying. I can't wait until I'm more familiar with EB and know better what's nothing and what's worth worrying about. For now, all is well. Praise God.

61 comments:

Anonymous said...

I have been praying for Jonah especially hard all day. I bet I have checked your blog at least 10 times this afternoon to see what the Dr. said. Praise God!!! What wonderful news!!! I will be lifting all of you up in prayer again tonight during Jonah's dressing change.

Brandy V. said...

So happy to hear it's not too serious! Praying for you all :) Hugs for Jonah from Washington :)

Leslie Baker said...

WhooHoo! Great news that the dr is not concerned! One great big sigh of relief for mommy, daddy and all of us prayer warriors! Praying for a calm and content Jonah during dressing change tonight...

Sus said...

Praise God for answering your questions about Jonah's respiratory health! He is gorgeous...beautiful...and so strong. Praying for continued strength for you and Matt.

Anonymous said...

Praise GOD, from whom ALL blessings flow. So happy to hear that all is well. You're great parents, and Jonah is extremely blessed to have you as his parents.
Sandy W.

Hope said...

I'm so happy to hear this!! Hugs to you! You are doing so well:)

Janet Caraker said...

I am so glad to hear this positive update! We are keeping Jonah and your whole family in our prayers. He is such a strong little guy!

michelle said...

Praise God!

Kristen said...

Yeah! So glad that Jonah got a good report. Don't ever worry about being too concerned as a mom. It is better to go to the Dr. and be told that it's nothing than to stay home and wonder...:) Love and prayers to you all.

Alyson said...

Jonah is such a strong little man!! I am happy to hear that he is doing so well!!! He's a lot like our little boy......He's always keeping you guys on your toes :0)

Blessings

Alyson

http://wellensfamily.blogspot.com

Anonymous said...

Answered prayers! Thanks for the update. By the way, just as you learn EB, you will learn parenting in general. When I first had my babies at home I jumped and ran (even after the third) until I got to know them and to understand what made each one special. You will learn and it will be a very natural development. Just give yourself a pat and a break! You deserve one today (and every day!). So glad to know you are on the road to success! Jennifer in Southeast, NC

WendyBee said...

Praise God from whom all blessings flow!
May the blessings just keep coming!
WendyBee

Watts Family said...

Glad to hear the great news!!! Have a Happy Easter!!

Many Blessings,

Amanda

Jane said...

Such good news, I could jump up and shout. Have been thinking about you all afternoon. You have got yourself a little fighter on your hands. Jonah is a tough little guy, probably more so than mommy and daddy right now. Hang in there Patrice, even with healthy babies, Moms get very uptight about things and you have much more of a reason with Jonah. Continuing to pray without ceasing about all of Jonah's concerns and needs. Hope the dressing change and night goes better for all. Take care and God Bless.

Anonymous said...

WONDERFUL! I"m so glad I checked back a little sooner than normal on you guys. =) Thanks for letting us know.
We will continue to pray for that sweet baby boy. He's stolen our hearts!
Daisy (alabama)

MelH said...

So glad to read this! I have had our little guy in my thoughts all day. I know he is all yours but I think most of us here love him like he is our own. Jonah has def captured our hearts!

Much love
Mel

blessedmomto7 said...

That Rocks! Hugs to Jonah and you!

Anonymous said...

Yay! Glad to read that he's doing good! Is he eating any better?

Millie said...

Great news! I'm so glad everything was o.k. I'm still praying!
Millie and Colin-HLHS
P.S.- I know the feeling of going to the E.R. And the docs know nothing about your childs diagnosis. :)

Baby Bird said...

praise God!!!
continuing to pray...enjoy the next couple of beautiful days!
love, aimee pence

Kristi J said...

Yay! I'm really glad all is fine and the doctor wasn't worried. It was good to have that checked though, because you just never know..better to err on the safe side!

Anonymous said...

I've been keeping up with you guys for a while now, but have never commented. But I want to tell you that I am overwhelmed with a feeling of gratitude on behalf of all who will face giving birth to a baby with EB, and will have your wonderful blog for encouragement and hope. Human nature causes us to ask "why", and I just can't stop thinking about how thankful I would be if I was facing this challenge and could have this wonderful blog, no matter where I lived, anywhere in the world. God definitely had it all in His plan when he gave Jonah to a loving christian family, so that all the world could see you walking in faith with Him through the good times and bad. You are such an inspiration! So to me, this is the "why", glorifying God, trusting him, and being faithful in prayer for all to see. I love it! Love in Christ, praying for Jonah ~ Elizabeth

Stacey said...

YIPPPPPEEEEEEE!!!!!!
Praise the Lord!! That is great news. I am so glad it wasn't anything major.
Take Care,
<><

Anonymous said...

It is all because of God;s amazing Grace This news is awesome, the minute I read your early am prayer request, I stopped immediately & prayed & have continued to do so all day. God is SOOOOOOOOOOO good..Jonah is beautiful!!!!!! There are not words to describe how good he looks, hard to believe that he will be 6 weeks old tomorrow..He is getting to be chubby I love those chubby legs & feet.

You & Matt are so special to be chosen as Jonah's mom & day. God truly has a purpose for all 3 of you.

Hope the dressing is going well tonight; though he might not do as well as he has been...he had a big day, going to the doctor.

Wishing all of you a wonderful Easter..knowing that Jesus died for us & then he arose to come back to cover us with His blood. Praise God.

Hugs & Kisses & snuggles, thanks for sharing your baby & your lives with us. I truly love you as if each of you were my own.
Wanda Wilkinson

RLR said...

Hi there -

I am SO GLAD that the ENT visit went well. I was thinking about you all today as the appointment time got closer and closer. I was praying for two folks with dr appts today, and both got good news. God is GOOD!

Haven't read all of the other comments, but I am guessing that someone else had already told you that EVERY mom wonders, at some point, when they will learn what IS worth worrying abut and what isn't. I have a 5 year old and I still second-guess myself!

Still, breathing a sigh of relief and saying prayers of thanks for the good report and for a good dressing change this evening. Know Jonah's had a long day, and I'm sure that you have as well.

Blessings...

Erin Edwards said...

Wonderful news! Did you see Dr. Kirse? We love that man:) We see him at least every 3 months for all the skin in Ethan's ears.

Hope everything else is going well. Please feel free to let me know if I can do anything. I was there with you in spirit on your hard day a few days back:) It's ok to feel like that. I had one of those days (the first in months... so it gets better) this week too, so I can relate. It's so hard to admit you need help taking care of your own child. I also feel like Ethan is a community child... but it has helped him be an even greater person (even if it makes me a little sad).

CinderellaMommy said...

HALLELUJAH! What great news! Your family will be in our continued prayers!

SW WI MOMMY

happygeek said...

So glad all is well.

Michelle in Va said...

Praise the Lord!!! I have been praying for you all day and have checked back many times to see how the little guy is. This is great news. The power of prayer never ceases to amaze me. Jonah is such a little fighter and man he gets cuter with each pic. Thank you for keeping us updated. Much love to you all. God is so good!!!!!!

EdwinsonFamily said...

That is WONDERFUL!!!! YAYAYAY!
Praise the Lord!
Happy Easter!

Donna said...

PRAISE!! Thank you Father!!
Grateful that you and Matt can rest easier today knowing that Jonah is ok.
Easter Blessings!

Anonymous said...

what an absolute blessing you, matt and jonah are to so many folks. i can hardley wait to read your blog every day and feel so apart of your family. jonah has touched so many people and he is such a beautiful child. i am so happy for the answered prayers you are receiving and the obvious joy that precious son is bringing to your life and the lives of so many people including me. thanks for your honesty, the photos and your witness of Christ Jesus in your lives. happy Easter!!!!

Anonymous said...

Glad to hear the ENT visit went well, and Jonah won't have to be scoped. Jonah is such a sweet, beautiful baby.

Gail
Annapolis, MD

Penny said...

Boy have I missed a lot. I didn't get to check in last night, sinus infection got the best of me, but I was so excited to see the progress for Jonah!! He looks SO good, what a sweet sweet boy.
Your little family is in my prayers each and every day. Seeing his healing skin brought tears to my eyes.......
So glad that you are getting help with a special changing station, what a blessing to be able to have everything at hand.

You ARE in my prayers, praising God for the blessings he is giving your sweet Jonah..........

Janel Waters said...

I am so glad that everything went well today and that you got good news!! I cannot tell you how relieved I am for you guys!

I am also glad that you posted the pics of the bandage changes - I think more than anything it raises awareness for this disease and everything that it takes to care for an EB patient of any age.

God Bless and and have a wonderful Easter!

Janel

Kelli said...

Thankful this wasn't serious! Hope you're able to get some rest!

Laura A said...

Praise God for a good visit from the ENT! And praise Him for Jonah's beautiful skin (esp. his hand - amazing!) God is giving you wisdom and strength to handle the dressing changes - and He's giving Jonah peace to handle them, too. I continue to pray for all of you!

Love,
Laura in TX

Stephanie said...

Oh, praise the Lord!!! I was worried!

Jenny said...

YAY! We're praying for you in Kansas!!!

twinsplusone said...

just found your blog....praying for you and your beautiful son, Jonah. God is good, He is there for you. Praying for you ---- we were at Vandy Childrens NICU for 7 weeks with our precious son, Joseph. God healed him through surgeons, doctors, and nurses. Praying for peace tonight in your home.

Erin Hingley said...

Thatta boy, Jonah! You keep being strong! I've been thinking about you all today and saying little prayers each time I wondered how Sweet Boy was doing. Praise God! Stay well!
Love,
Erin in va
youmeandwipee.blogspot.com

the-mommy-person said...

Thank you for sharing the pics. He is such a handsome boy! As a mom, I'm not satisfied just praying for less blister, or good appetite. I'm going all the way. Please God, take away all signs of EB and heal Jonah...all to glorify your Name. But God's will and his timing. God bless!

the-mommy-person said...

Thank you for sharing the pics. He is such a handsome boy! As a mom, I'm not satisfied just praying for less blister, or good appetite. I'm going all the way. Please God, take away all signs of EB and heal Jonah...all to glorify your Name. But God's will and his timing. God bless!

Mindy said...

Praising - Right Now!

Anonymous said...

AMEN!!!!!!!!!!!

Our family page said...

I am so happy for all of you! I know this must be such a comfort to you. I kinda feel bad leaving a message when there have been 45 left already, I mean, just one more thing you have to do, huh? I just wanted you to know I am here in Mexico praying. I have thought of you often today and checked your page a few times to find out whats happening. So glad He is answering our prayers! Blessings! Missy in Mexico

Christian said...

Glad all is well. Been reading your site daily since little Jonah's birth. He is a beautiful boy and blessed to have such great parents. Even more than a "community" or even you, he's God's child, and his Heavenly Father is watching over him.

Much love to your family! Praying for peace and rejuvenation!

Nathalie from Toulouse said...

wonderful news!

Renelle and Cole said...

Praise God indeed...He is wonderful and powerful! :)

Jason said...

We have added Jonah to our prayer list as we stumbled onto his blog. We have been blessed with a beautiful daughter, Hannah, 6 years ago with RDEB. I pray for comfort, strength and peace during your journey, but most of all I pray for a cure.

Many Blessings

Shannon said...

Yay! Have a Happy 1st Easter with your new beautiful boy:)

Julie said...

that's just great!

are there ever concerns with a dog (hair, dander, allergy stuff) and a baby with EB?

The thought just popped in my head because my baby gets a VERY hoarse cough due to allergies.

Anonymous said...

Patrice,
My name is Heather and I have a little, well not so little any more(he is almost six years old), boy with JEB. I have been following Jonah in my spare time which is rare. I just read this post and got a terrible knot in my stomach. My child does have airway issues and your ENT is VERY wrong. I won't go into his whole story but we heard very similar things that you were told. BUT from personal experience it happens FAST and without warning. If there is blistering in the trachea, this is not something to take lightly. A blister can pop up at any moment that can completely occlude his trachea and he will not be able to breathe. I understand that this post is completely raining on your parade and if you choose to disregard my post I understand. Something inside of my just told me I had to share our personal experience. I would be more than happy to discuss this with you in more depth if you would like. You can email me at chwstone@comcast.net. I wish you and your family the best.
Heather Stone, mom to Wesley (6 y/o with JEB, trach and g-tube)and Noah (2 y/0 and 100% BOY)

Jessica mommy to Alex/ RTS said...

I remember when Alex first came home from the NICU, everytime he would cry instead of saying hes a baby and babies cry, I would wonder which of the 90 some odd symptoms of his syndrome was bothering him. As time went on I learned what symptoms he did and didnt have, and got so much more relaxed. I hope you are able to relax sooner than i was, and still keep your mamma instincts about you:)

Melissa said...

I am so glad that everything turned out alright! Thank God!

Channe said...

Praise God - I'm so glad to hear it wasn't anything serious

Kim M said...

Praise God for a good report and a doctor who will take the time to explain what you can and cannot expect. Knowledge will be your friend and we'll pray for wisdom as you use the knowledge you gain along the way. Yeah for Jonah! Yeak for God! Yeak for parents who are willing to do whatever is necessary to make life better for their little guy! Enjoy and love on him.
Happy Easter! He is risen, He is risen indeed!

Anonymous said...

Praise God all is well.

Wishing you all a very Happy Easter!

Alisa said...

I'm so glad you got good news. Still praying for you that you all will get the rest you need as you continue this very busy schedule with your sweet baby.

Tribulation said...

you know i amazed by God's wonderous power everytime i check in on Jonah and Stellan. He really is a great God. and I will not cease praying for either of them. everytime i see my kids, for a moment, i imagine what Jonah and Stellan would look like at that age. how would they sound? would they be serious or hilariously funny? would they climb fearlessly like my 6 yr old or would they be as kindhearted as my 8yr old who wants to rescue every animal she sees? and thats just how often I pray for Jonah, Stellan, my own kids and all the others. there is no set time,it is a constant ongoing real time streamstraight up to the only one who can do anything to fix it. so many prayers and a whole lot of love for you, matt and Jonah.

Beth said...

Yes, Praise God!!

Glad to hear that all is well!!