Saturday, March 14, 2009

update

Jonah had a really rough time during his bandage change tonight. Almost the perfect day. Please pray that tomorrow night will be better. I hate to see him in so much pain.

40 comments:

Beth said...

Oh sweet boy! Praying that Jonah has no pain!!

I can't even imagine!! You guys are SUCH an inspiration!! Lean on God, he will see you all through this!!

Aimee said...

Oh, I'm so sorry and yes I will be praying... for all of you.

Simba9960 said...

Oh =( them bandage changes can be horrible sometimes...but I must say with all the "POSITIVE" news you've been sharing he seems to be coming along really well! You guys are comfortably gearing up for his big arrival HOME! It might not be happening tomorrow but slowly I can see (more like "Read") the wheel of progress slowly churning!

I would love to share some pics of Bianca w/you all! We were told so many things when she was born it's unbelievable that we've come such a long way from 6 years ago! I might be sending some pics to Jonah's email so he can meet Bianca!

Praying For Jonah's Continuous Recovery,

~Sally

j3k said...

Prayers, Prayers, Prayers!

I'm so sorry you have to end a perfect day with knowing he wasn't feeling well at the end. Know that they will make him comfortable overnight and everything will be good. His little dreams tonight will be from all the loving looks and cuddles he had with you and Matt today!

Hearts and Hugs
Marie

Megan @ Hold it Up to the Light said...

I love having something specific to pray for, but know that God knows every need before we even ask....I will be praying for comfort and peace.

Have a restful night, sweet Jonah (and Mommy)!

Jesus, My Best Friend said...

Praying for your family. I just found your blog tonight and my heart is so heavy for you all and your precious Jonah. Our God is good and He will continue to comfort and guide you. He is mighty to save. Much love and Prayers from an infertile girl like me to a precious family like you! Psalm 46

michelle said...

So glad the day was such a good one. So glad to hear baby Jonah ate all his bottles. Continuing to pray for you all, especially sweet Jonah. Love to you all. God is so good!!!!

Janel Waters said...

I really think that the cruelest thing about this disease is how quickly a perfect day can turn on a dime. It is just so not fair!!

I really hope that he finds some comfort tonight as well as you and your husband!

I am at my mom's house for the night before going home tomorrow - she has a really hard time dealing with seeing other children with this disease, but I made her look at pictures of him from the first posts until yesterday and she agrees with me that he looks 100 times better. We are both praying that the trauma from birth will be the worst trauma that he suffers and that he will have a mild form of EB.

I was so happy that you guys had such a great day! As soon as I get home tomorrow I am going to put your package together with the adhesive remover and get it in the mail on Monday.

Still praying, as always!
Janel

Anonymous said...

I was so glad to hear of the good day he had. Even though the end of the day was rough, just remember all babies can be more fussy or sensitive when they have had a long day like Jonah had. It could be part crankies, part pain, but mostly I bet it is just the end of a long day with the new schedule adjustment. As always, we are parying for you!

dg darling said...

I keep almost a constant prayer dialogue going on behalf of your sweet baby boy. I am so glad that he is improving and I will continue to pray for you all...

Tiffany said...

Patrice - It was so great to talk with you today -- I am SO very happy that you had such a wonderful day - GO JONAH - 5 bottles in a row!! Hooray! I was very sad when I checked back one more time before going to bed that the day ended on a rough spot and that Jonah was in pain, but given the ups and downs of other days, today still seems like a GREAT day! Praying for many more days like today but with dressing changes like last night - and a painfree night for Jonah! We love you all! Tiffany

Janna Lynn said...

Sounded like a great day with a rough ending! We've been talking and thinking and praying for him and all of you SO much! Love you and hoping for a GREAT day tomorrow!

MelH said...

Patrice and Matt, we here in Arkansas continue to pray for your family. I cant tell you how often I think and pray for Jonah. This afternoon I had lunch with a couple of old school friends, one from out of state. Come to find out we all three are staying upated on your family and praying relentlessly for Jonahs healing. I feel such a connection to you and I feel the lord brought me to your blog for this reason. Please know we are all on our knees praying for your son and we will not stop! You are an incrediblly strong woman and I am proud to be to be a mother and a woman every time I read your blog. God bless you and your boys.

Much love,
Mel from Arkansas

Lauren said...

it sounds like an awesome day overall, though! finally eating consistently--woo hoo! and i love the shout-outs and the wonderful team you have there to support you, matt and jonah.
enjoy this time and i will be praying for jonah's pain during the dressing changes. and definitely for next wednesday--i just hope so much that he has one of the milder versions.

Anonymous said...

still praying for you all
Em
from Australia

Sus said...

Heavenly Father, wrap your comfort around Matt, Patrice and Jonah tonight...given Jonah rest and peace...and give his mom and dad the strength to know you are the Almighty. Bless this child.

Amy said...

I'm glad the day was good...we definitely enjoyed getting to see the little guy (and you...you're looking so good, by the way). Especially in your arms. Sorry the dressing changes were tough.

Laura said...

Hello. I just heard about your story and I am praying, praying, praying. Jonah is a beautiful boy.

Jess said...

So glad today was a good one! I will say a prayer for many more good days to follow!

(I am craving Chick-fil-A sweet tea now, thank you very much!!! Are they open at 1 a.m.?!?!) :)

Ron Lee said...

ADDING OUR PRAYERS FOR JONAH-

Hi Matt, Patrice and Jonah-

HELLO FROM THE MIDDLE EAST!!!
We were introduced to your blog recently by Kelly Pledger. We have followed Precious Mia and her family for many years now.

Jonah, we are so sorry to hear you are suffering so much and we wanted to stop by to let YOU and your family know that many Christians on the “Other Side of the World” are also PRAYING for YOU. We will be praying the “GREAT PHTSICIAN” intervenes for you and that he will feel much better very soon. We know our GOD IS ABLE.

The World has gotten smaller thanks to the internet. Even though we may be Strangers to you, in God’s eyes, as Christian believers, we are all family & friends and HE has instructed us to “Pray One For Another”.

As Americans, being located in the Middle East for the past 16+ years, we are about 10,000 miles away from you & +8 hours ahead of your current Eastern Time Zone so we are able to easily cover “Jonah’s nights” and most of his days with our prayers. So take the liberty, Matt or Patrice, to post a message at any time “day or night” when you have a specific or URGENT prayer need and we will be sure to immediately take it to the LORD in Prayer.

We will be praying especially for GOD’S wisdom for Jonah’s Doctors & Staff as they work to properly sort out & diagnose his current needs. May the Peace and Comfort of our LORD be with you ALL throughout these coming days as you continue to put your Faith and Trust IN HIM. Our prayers will continue to hold up Jonah and your family from “Our Side of the World”. KEEP LOOKING UP!!!

In HIS Love,
Ron & Kathy Lee
United Arab Emirates

lov said...

oh jonah....god is with you, and prayers have been sent! we all love you so much, and your parents too!
i'm so thankful that god allows us all to be sisters and brothers through his love!

apettitt said...

Patrice, I was so happy to hear that you guys were able to have such a good day on Sat. I am sorry he had such a rough time with the bandage changes last night!! I pray that he will have another good day today and that his bandage change tonight will be better!! You are in my thoughts and prayers constantly!! God Bless you, Matt and Jonah!!

Southern Gal said...

I've never commented, but have read your blog for a while. I didn't realize you lived so close to our neck of the woods.

Praying for Jonah, his treatment, his doctors and you.

Anonymous said...

I'm sorry such a wonderful day ended with such a bummer. If it's any consolation, please know that infants have no long term memory of their pain in the first few years. I know I used that one when my son was in the NICU and subsequent hospitalizations and when I accidentally bumped my infant daughter's head into a doorway frame.

It's so hard to watch our little ones in pain, but they have no long term memory of it and NO association of us with the pain when we are there to comfort. We will pray for your requests.

Melissa said...

I hate to hear that he had so much pain during his changes, but Lord, what a blessing that the day went so well!! God grant that the rest of the days continue to improve as well, and that the pain levels will improve with them...

{{{HUGS}}}

Melissa

Runner Mom said...

He is just precious! Y'all continue to be in our prayers! Hope that today is a good one for that darlin' baby boy!
Hugs,
Susan

Channe said...

will do... glad he has turned a corner with the eating

Claire said...

Praying for you all.

Cxx

Britni and Justin said...

I arrived here from Kelly's Korner. Your baby boy is so precious! I will be praying for him and for his family!

Jenny said...

I've been following your blog since I read about you guys in the paper. I hope that things continue to go well. I'm keeping your family in my prayers.

Jenny said...

Of course we will keep praying, it must be so awful for him when they change the bandages - he really is such a little hero, to have to cope with so much pain whilst he is so young... Prayers - prayers - prayers all being sent to our heavenly Father for our sweet Jonah. God bless you all and keep you, hugs to you all
Jenny from Oz

Anonymous said...

Patrice, Matt and Jonah

You have been in are thoughts and prayers daily.
God is watching over you, his comfort, peace and joy are yours. From our famliy to yours, God Bless.
Love Jim and Blanche Magee,

Amber said...

Just wanted you to know that our entire church is praying for Jonah. He is on the prayer lists at the ladies Bible study group, the choir, and the adult Sunday School group.

I know God is holding your sweet baby close.

Praying and believing for miracles in Jonah's life!

Julie Faucette said...

Matt, Patrice & Sweet Baby Jonah,
You do not know me but I feel like I know your story well. I work with Leigh B. and I just want you to know that if you could pick Godly friends, she would be at the top of my list. She speaks of you every day and we get the "Jonah update" at lunch if we have not visited your blog. She has even printed pictures of him and we have all hung them in our offices.
Just know that you are loved, thought of and prayed for daily by some of your very dear friends and their friends.
God Bless!

Kristy said...

I am so sorry to hear that! I just wanted you to know that your sweet boy is now on my church's prayer list. There are prayer warriors in Kentucky storming the gates of Heaven for him today.

Michelle said...

I will continue, as always, to pray for your sweet baby boy!

Blessings,
Michelle

Joanna said...

You guys are still in my heart, on my mind, and in my prayers! And of course, I have to "tune-in" everyday for news about my little sweetheart! Patrice, he is looking stronger and stronger everyday! And I love that beautiful blond hair. I wonder where he could have gotten that from??? LOL Kiss his little forehead for me, okay?

Joanna

littleleaps said...

Patrice, I look back at the times Lydia was the sickest with mixed emotions. I ached for her. But mostly I was at so much peace. I would look down at her and see the broken Christ. I could see His reflection in my own baby. I see Him in yours too. I look at Jonah's pictures and see the love of my life broken and hurting, but with peace. Jesus hurts with our little ones. He took on their pain. I sometimes wonder if Mary knew some of what He would have to endure. I pray Isaiah over these sweet loves: we are healed by His stripes. I confess my own sin to Him and thank Him that He took it all on willingly and lovingly so that we are healed by His stripes.

So it's Sunday, late, I am quite sentimental, and I should be asleep. I don't worship our babies, but the one who created them perfectly.

littleleaps said...

I am so glad that Sunday was so perfect! I woke up and rushed to my computer with a burden, and afraid that you would get the wrong message from my earlier post. I want you to know that you did not cause any of his struggles. As a mom I easily carry around needless guilt. I wanted you to please not carry around any either. You are precious. I personally struggled with this. I would give it to God, then worry later, then give it back again. Sorry for the interruption.

Angel... said...

Dear, i saw your blog first time..i came through alan..your baby boy will be ok believe me..he is in my prayers..i have tears in my eyes while reading your blog.. plz be brave everthing will be ok.love you
angel