Thursday, April 9, 2009

prayer request

Jonah woke up last night for his midnight feeding with a VERY hoarse cry. A hoarse cry is the one major symptom they had told us to look out for as an indicator of respiratory issues/laryngeal involvement. We were supposed to go to the ENT today at 4pm just for a check-up, but I called Dr. Ali (the WONDERFUL dermatologist at Baptist) this morning, and she's going to talk to the ENT and to Dr. Fine about what our course of action should be. I'm waiting on her call as I type.

Please be in prayer for Jonah, as this could be serious, and for us as we decide the best coarse of action. I debated taking him to the hospital last night, but didn't really want to go into the ER with a baby ER doctors know nothing about, EB they know nothing about, and didn't want to be in a place where there would be so many germs.

We'll end up AT the hospital today either way since we had the appt anyway, but I'm hoping to get in quicker and to see the right folks. Matt has called in to let them know he's not coming in to work until we have a better grasp as to the severity of what's going on.

Please pray for Jonah.

72 comments:

Nathalie from Toulouse said...

Praying that this is nothing serious and that they can help him get rid of this cough.
I pray that all goes well for you

Heather said...

Praying ever so hard for Jonah, and you and Matt!

Goldylocks said...

Praying for Jonah here in NY. I pray that everything goes well at his appointment, and that it is nothing serious.

Stephanie said...

Praying that the appointment goes well and you get some answers very soon. Please let us know how it goes as soon as you get a chance to post about it.

Stay strong!

Anonymous said...

Praying hard already! Know that we are all with you today and He is too!

Hope said...

I'm praying hard for Jonah!!

Emily said...

Our family is praying!! May God bring you peace, wisdom, and comfort today! Little Jonah has stolen our hearts here!

Stuart and Tashia Uken said...

We will be praying you find answers to his hoarse cry. We had that with both of our boys. It was just proof there were blisters in their throats. Praying you can get in earlier than your 4:00 appt.

Tashia Uken

Amyb99 said...

Praying that the cry is nothing serious. Praying God's healing hands upon Jonah and praying for God's peace to surround you all.

God bless.
Amy in PA

Amber Schmidt said...

Praying that our Heavenly Father will scoop that little bundle of cuteness into His arms and breathe healing into Jonah's little body. Praying that it is nothing serious and that you all are back home in your beds very soon!

Alyson said...

I'm praying hard for little Jonah!!!!

God bless,

Alyson

http://wellensfamily.blogspot.com

CastingCares said...

Praying for sweet Jonah.

Jennifer Pelkey said...

Of course we'll pray for sweet Jonah. We pray that you will get in to see the right doctor today who will have answers. We hope he'll be back home in your arms tonight, feeling much better.
With love,
Jennifer, Darren, Matthew and Charlie Pelkey
Elkin, NC

jandkland said...

I'm amazed at the many steps you have to go through for dressing changes (previous post) and am grateful to you for being able to share these details with us. I am also so saddened to hear about Jonah's cough, can't imagine the fear you must feel, and am praying hard for your strength and peace as you find out what comes next. I hope it is not serious.

--Kelley in GA

the*4*of*us said...

Praying!!

Anonymous said...

Of course, without a doubt prayers will continue to come your way from Batavia. IL. Stay strong and keep trusting in the Lord.

Twice Blessed said...

Praying!

Sarah said...

Saying prayers for you, Matt and Jonah.

Anonymous said...

Praying for you!!

The Byrd Family

Jo said...

Praying that Jonah ends up being just fine and that this cough is not serious at all.

Thank you so much for sharing your lives with us. I looked at my four month old son's skin this morning and felt so grateful. He's had some health challenges but nothing compared to Jonah. We have an appointment for him today but now that I'm praying for you so hard, it helps me go to Jamie's appointment with such a sense of peace. Our challenges are so minor compared to yours but you cope with such grace!

Much love to you and your family!

Baby Bird said...

prayn 4 u right now and throughout the day!!!!
love, aimee

The Burgess Family said...

Praying for nothing serious, and if it turns out to be something serious, praying that the doctors are able to treat him quickly!!!

Heather said...

praying right now ~ please keep us posted.

Anonymous said...

Praying for wisdom, peace, mercy, grace and favor.
Much Love-
Amber

Vera said...

MANY prayers!!!!

EdwinsonFamily said...

Very definitely praying... and trusting that God is not taken off guard. Trusting that He is in control. And, that you will feel Him present and feel His peace.
Praying, Praying, Praying.

Meg said...

Patrice, Matt and Jonah ~

Just wanted to let you know that I think about and pray for your family daily. I am not sure how I even stumbled upon your story; your journey - but I did and you have impacted me, forever. I rock my little one at night and pray that I will be a wonderful caregiver, faithful in my beliefs, giving and kind to others; loving, respectful and supportive. I have asked my friends and family to join your loving community; your family - in holding you all up in prayer through the good times and the challenging times. I just wanted you to know you had one more person who LOVES your Jonah, and offers MANY prayers for health and happiness for all of you.

Nicole said...

praying for you guys!!!

happygeek said...

Praying.

mandi said...

Praying for baby Jonah (and his parents!!)!

Kellye said...

Praying in Houston for your beautiful boy and your lovely family...I hope that this is nothing serious, and that Jonah continues to heal and grow!

CinderellaMommy said...

PRAYING HARD!

SW WI MOMMY

Michelle in Va said...

Praying for you all!! Praying you see the right dr's today and Jonah to be healed. It is so amazing the healing Jonah has gone thru. Remember that little angel is such a fighter, and a cute one at that. He has a special guardian angel on his side. Love and prayers to you all.God is so good.

Leanne said...

Thank you for your specific prayer requests... I pray often for Jonah & you guys in general, but will pray hard for this specific request. I pray that this cry is just a hoarse cry & not evidence of internal involvement...
Much love & prayers from GA,
Leanne

Heather said...

Praying for Jonah and you & Matt right now. They can get hoarse from reflux, and I am praying it is something simple like that. Even if it isn't, praying that our BIG God will touch Jonah and give the doctors wisdom today.
Praying for complete restoration in Jonah's body.

April Swarthout said...

Praying ever so hard for Jonah and you family.

mrsrubly said...

o no! praying for jonah here in houston TX..i hope all is well and the action plan is resolved instantly.

Kristy said...

You made the right decision in not going to the ER. The stories I could tell...

We'll be praying.

Kristy
Mom to Carson, 6 years old, EBS

brandie said...

So sad to hear the news of his cough. Praying he will be better soon and the dr's will be able to treat him asap!

Donna said...

Praying here in So Cal for Jonah and you and Matt...praying for wisdom for this ENT doctor to be able to help Jonah and that the appoinment goes well today. May God Bless your day.

Jane said...

Continuing to pray so hard for Jonah, you and Matt. So sorry about his hoarsness, I pray it is nothing serious.

Leslie Baker said...

Praying, praying, praying...that Jonah does not have laryngeal involvement and if he does...that it is minor and a quick course of action stops it in its tracks! I think you made the right call on the ER...too many germs and not enough direct knowledge of Jonah and his condition could have made things worse instead of better. Great instinct Mommy!

Jenny said...

Still praying for you all especially for beautiful Jonah!
Hugs
Jenny and Doug

Hector, Patty, Samuel, Avery and Isaac. said...

I've read your blog for a while now. A friend of a friend of a friend of yours told me about Jonah, and I've been faithfully praying for him and your family ever since. I've wanted to leave comments before now, but everything I type comes across sounding the wrong way. I'm sure I'm not the only one who feels this way. But I wanted to share these words with you... words that were spoken to me by my Pastor when I was going through a particularly difficult time in my life, questioning God's role and wondering why he was allowing such heartache, pain and uncertainty. My Pastor said, in the times when you are happy, God felt happy first, as if He was saying, "I can't wait for you to see what happens next, because you are going to feel so much joy!" But in the times when you are sad, angry, tired, lonely and confused, God is still right there saying "Long before you felt this way, I felt this way first for you, because I knew how sad you were going to feel. Before you wept, I wept. I know what it's like to see your child suffering. I know the pain you feel. Take my hand, and we will get through this together. And in the times when you feel weak, I will be your source of strength."

Please know that the prayers of many are being lifted up on Jonah's and your family's behalf.

Stacey said...

I am praying for God to wrap His arms around you all today. I pray for wisdom for the Dr.s who will be deciding what to do and I pray that the Lord would heal Jonah from this throat issue.
I will be praying for your little bundle today.
<><

Teresa @ Grammy Girlfriend said...

Praying that it is not serious...think of you so often ....

Jenny said...

I will keep all of you in my thoughts and prayers.

Jessica mommy to Alex/ RTS said...

Hoping you get answers fast!

jess said...

Praying...

Anonymous said...

Your sweet baby and wonderful family are in my thoughts.

Kimberly
WI

Stephanie said...

praying!

Outnumbered by 3 Stooges!! said...

i seriously think im in love with your son, and i have three of my own!

Ebeling Family Blog said...

we'll pray the cough heals quickly-
poor little guy!

Ebeling Family Blog said...

Be strong and take heart, all you who hope in the LORD.
Ps 31:34

Anonymous said...

Praying for Jonah and your family.

Anonymous said...

In prayer for Jonah......

Kristi J said...

I've been praying! I'm so hopeful it turns out to be nothing to be concerned about.

I also read your post from yesterday about Jonah's nightly routine, and it is so good to see his little body looking so much better. Thank you for allowing us a peek in, to understand some of what you go through each evening.

Anonymous said...

Prayers are being lifted up. You have been on my mind so much today (before I read your post and especially since then). I know you don't know me but I wonder if your ENT is Dr. McGuirt or anyone in his group? He saw two of our kids, one is our at risk guy. He is WONDERFUL and most all of them in his group are as well. I am praying for you and hope to hear a positive update soon. But we will take what we get and keep on praying! Jennifer in Southeast, NC

Beth said...

Praying, praying, praying!!

Anonymous said...

Praying for strength for all of you and that this is not serious.

Anonymous said...

Praying for Jonah here in Canada that there will be good news at the doctor that this is nothing serious.
Jennifer

j3k said...

Knees, prayers, hearts, and hugs

Anonymous said...

praying right now.
daisy

MITZI said...

Praying for Jonah in California. Everyday and whenever God's brings him to my mind throughout the day. Such a precious little boy.

Martin Family said...

Praying and waiting for an update!

Erin said...

on my knees for sweet Jonah!

Katy said...

Praying throughout the day for sweet Jonah, and his Mommy and Daddy! ...healing... strength... comfort.... peace... wisdom...

Cristi said...

Praying from Louisiana!

Rachel said...

Praying with all my heart and soul!

amy said...

praying right now!

WendyBee said...

Praying for strength and health for all three of you...
Praying for wisdom and compassion among the doctors and nurses you encounter...........
Praying with gratitude to the God who has given us the Internet so we can share wisdom (the other EB families), share prayer requests, and share your stories...so amazing. It is truly another example of the power of prayer, which God himself has also given us.
WendyBee

Anonymous said...

I just praise the Lord for all He has done and will continue to do for your family. I pray that the doctor's visit went well today.

Thank you Lord for all you are doing for this family. Thank you for being in control. I know that you love Jonah, Matt and Patrice.