Saturday, March 7, 2009

jonah's media debut

Jonah's article is now online: Click HERE to read it.

We know this article is about you guys more than us, and although it's making Jonah famous, ultimately we hope to help make Jesus famous.

I've been very worried (motherly instinct or just psycho-mom?) about Jonah since early evening. He was sleeping A LOT but hadn't had morphine since mid-day when they did his dressing changes. He refused his last 2 to 3 bottles (wouldn't even open his eyes or acknowledge them in his mouth), and was just so lethargic, it scared me.

We just called a few minutes ago though, and he was crying for it at 2:30, and took the whole 15 cc's. I'm having a hard time being at home tonight (as you can see by the fact that I'm up writing this at 3:15 am), and I'm still feeling pretty uneasy. I don't like it when Jonah is so completely out of it. And any time he has a temp change, they just alter his bed temp. When do we know it's really a temperature change in Jonah? I'm just so scared of an infection, I can barely breathe sometimes. I feel like I'm somewhere between staying in bed for four days straight and being beside him 24/7. I know so many of you can relate.

If you're up right now, please say a special prayer for Jonah, that this feeling I have is just paranoia and nothing more... and if you could ask for a special helping of peace for Matt and me, that would be great too.

And don't forget to check out our little man in the paper!

82 comments:

Anonymous said...

I found the link to this blog thru rachels and I wanted to let you know that we are praying very very hard for little jonah

Sending tons of healing energy all the way from India

Anonymous said...

no worries! prayers for jonah and patience for mommmy and daddy going right up!!! :)


...you're not the only one! it's 3:48 am!!...

-Angie G.
Charlotte, NC

PATRICIA DAWN FRIDDLE said...

HEllo Williams family. My heart truly goes out to you and especially to Jonah. I hope the lord will touch him and heal him of this condition. I am so sorry for the loss of Gabe also. My sons birthday is April 22nd, he is now 24. I have seen this condition on shows like Maury. Have you checked with some of the larger hospitals to find out the best treatment for Jonah? They get these cases all the time, and our smaller hospitals don't. I would check with the larger hospitals to find out the best course of treatment. Also, I would suggest emailing Dr. Phil to find out the absolute best doctors in treating this condition. Best of luck to you, your family, and especially to Jonah. I wish you much peace and happiness and for Jonah to be pain free.

amber said...

praying!

Aunt Joyce said...

Patrice, although I hope your body has finally given in to sleep, I was up and checked your blog one more time before returning to bed to try once again to get some rest. I just want you to know that your show of faith has helped to increase mine. Without going into details, my life is going through a difficult time right now although it's not near what yours is. I am ashamed to admit that I have not been using prayer like I should and your show of faith has been a real boost for me. I start out praying for Jonah and then find myself praying also for my needs. Thank you.

God Bless you to Heaven and back,
Aunt Joyce

Chris Hilton said...

Patrice, you aren't the only one not sleeping. I have been up since 1:45. I know it's difficult but sweetheart YOU NEED YOUR SLEEP. I was there and I know how very tired you are. For Jonah's sake go back to bed and curl up with Matt. There are an army of us out here let us do the worrying for you until morning. None of us can do what you must do and that's care for that sweat baby. For that you of all of us need to sleep.

Much Love, Uncle Chris

Buffy said...

Patrice - it's 7 a.m. and though I wasn't up in the middle of the night I am praying now. Praying Psalm 139 over your sweet boy and that you will be able to lean into the truth of these verses.

I found out about Jonah through Leslie Sloan. Matt is my brother. Praying for all of you.

The Van Ordens said...

You are so famous Jonah! God is surely smiling! Hang in there little man, we are lifting you up in prayer; and your mommy and daddy too!

Baby Bird said...

Praying...I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit (Romans 15:13).
I know this is not exactly the same situation because my Hannah was not fighting for her life but when she was 10 months old I had to start letting her go for weekends with her father and I was distraught about this. During that time I was going to Divorce Care at Pinedale and I remember through one of the many weeks I sat in those meetings God reassured my heart that He could care for my baby far greater than I ever could AND He loved her with an everlasting LOVE, from before even time began!!! Its not to say that I let go and trusted Him completely after that but it did bring such peace to me...and I hope it does for you today Patrice and Matt!
We love you all!
Aimee

nancy said...

Patrice, Please take care of YOU. You just delivered a baby a week ago. It's hard enough on moms who bring their babies home and try to recover what their bodies have been through while taking care of the new addition in the home! Look at all your mind and body has been through right from the very moment Jonah was born. I am just worried about you. He is in God's hands and the great team you have at Brenners when you are not there. Take some Tylenol PM, not Ambien, so you can get a full nights sleep. You and Matt go out to dinner alone, but just take care of YOU! Great article in the paper! Looking forward to an even better update tonight on Jonah. Each time you write, there are always some positives that are happening! Little steps are turning into Big steps! Jonah has been given the best parents that will always put him first, be an advocate for him, love him unconditionally and raise him in a Christain home. It gives me peace to know that is why God chose you as his parents. He is a lucky little boy and I hope I can meet him one day.
Promise me you will take care of YOU because Baby Jonah wants and needs you @ 100% more than anyone else! Go outside and enjoy some of this beautiful sunshine and warm weather we are having this weekend. Look at all of God's beautiful creations all around you, the birds, budding flowers, green grass, beautiful blue skies and the smell of spring in the air.
God is everywhere and esp. with you right now, I guess because you are talking his head off and just worrying him to pieces! that's ok, keep on because he loves it!
Praise God for you and Matt to be chosen as Jonah's parents! That's my shout out for the day!

Nancy Lee:)

Lynne said...

I am praying for precious little Jonah. I got your link to your blog through another little boy who has EB. Always in my prayers. My family in York, Pa are praying for you and Matt and of course Jonah. I know he will a long life. He is such a fighter.

brightleigh said...

Guys, what an awesome article. I think it is great that they used actual clips from your blog.

I know it is so hard for you to sleep, Patrice, and I know you have a mama. But it is very important!

Jonah looked great yesterday. His skin looked better and his coloring was better. Just remember that even healthy babies won't eat sometimes. And this is the road you and Matt are on right now--there will be days when he takes 4 steps forward and 5 backwards. It is important that you relish in the small steps forward and not dwell so much on the backsteps. It is hard not to. But think positive and focus on the good! God is right there with you in that hospital and he is surrounding you in love, comfort, and strength. We love you much and continue to lift you up in prayer.

ajc4ever said...

That was a great article. I felt a little "smug" to know that all the blog quotes they used I had already read here. lol I'm one of those strangers that came over from MckMama's site. Praying for Jonah's healing and your peace.

Mary Dunbar said...

I just wanted to say that I read and pray about a lot of babies and their stuggles. Little Jonah has touched my heart. He is a special boy and there are many praying for all you.

Mary w/Triplets in Upstate NY

Tracey said...

I was led to your blog through the WS Journal article. God bless you, Matt and little Jonah. There isn't a better place in this world that he could be right now than Brenner's. There are special angels that work there and God works miracles through them. I pray that your whole family will find peace during this time and that little Jonah will find comfort surrounded in your love and God's grace. God bless you all.

Jessi said...

Hey Patrice,
Just wanted you to know we're still praying for you all often throughout the day and night. Jonah is a daily topic of discussion and prayer around here. The article in the journal looks great...God is really using your sweet family. We'll be sure to get a copy today and save it for when your little guy is old enough to scribble his autograph on it for us! :)
Love you guys lots!! Get some rest and know there are lots of us covering you all in prayers while you sleep.

Jessi

Melissa said...

Trust your instincts, but don't let fear overpower you. Fear is like walking a high-wire way up at the top of a circus tent...you feel like one mis-step and you're going to fall into...something...an abyss, a straightjacket, whatever. I have been there. I have let the fear overpower me, and it's a dark place to go and a very hard place to come back from. You felt that something wasn't right based on the way Jonah was acting. Based on what you've said, I would feel the same way. The fact that he took a good feed at 2:30 is a blessing, and a good sign. The best advice I can give you is to take that as a good sign and just keep watching. Ask the doctors how long it is okay for him to go without a feeding (by bottle, not by tube) without it being an alarm. Perhaps he was having a small issue that has corrected itself, or perhaps he just plain didn't feel like eating. Whatever it is, just keep your eyes open but don't let fear take over your lives... I'm sending prayers for a better day each day for Jonah, and for peace and strength for you guys....and lots of {{{hugs}}} to all of you...

Hope said...

I am always praying for your sweet Jonah. He's beautiful and it breaks my heart to know he's in pain. It goes against the very essence of being a mother to not be able to ease your child's pain. Although I don't have a child with EB, I do have a special needs baby. You are doing amazing, hun. Huge ((hugs)) to you.

Anonymous said...

Patrice and Matt,
We are praying for you all right now and I hope that your next post brings good news. I was in high school with Kim and new Matt when he was little. Jonah is on our prayer chains here in Greenville, SC. God Bless!
The article in the Journal was fantastic. The reporter did a great job and God is certainly glorified!
Brandi Koontz

Lauren said...

i'm without internet this weekend at the conference. i'm checking now at a coffee shop, but you are on my mind CONSTANTLY and we are praying for you here at the youth conference. the article is wonderful and i love that they included excerpts from your blog. take care of yourselves and know that we are praying without ceasing for jonah.

Desha said...

What an awesome article! It is amazing what God is doing through Jonah's testimony. Still praying for the little man and that you would be able to have him in your arms SOON!

Stephanie said...

I think you are far from psycho- mom. I have been amazed that you can finish a sentence on the blog.
I would have already been committed into the loony bin. Your strength is surpassing my understanding.
My heart hurts so much for you 3.
I am "wrestling" in prayer. Not letting go until God blesses you.
You are loved by God. If only we could see fully what we see in part. I cannot wait to see him face-to-face.
I am so sorry. I, too, am familiar with darkness. May He meet you there in power. May He carry you in His grace. May He empower you as you are now going into ALL THE WORLD sharing the gospel. May He come back for us soon! And lastly, may His light pierce the heavy darkness surrounding you...
"Let the LIGHT of your face shine upon us,O Lord."
Psalm 4:6
"He wraps himself in LIGHT as with a garment"
Ps 104:2
"...let us walk in the LIGHT of the Lord."
Isaiah 2:5
"that you may proclaim the praises of Him who called
you out of darkness into His marvelous LIGHT."
1 Peter 2:9
**********************

"On his robe and on his thigh he has this name written: King of Kings and Lord of Lords." Rev 19:6

Angel said...

Just wanted to let you know that we are still praying for Jonah, as well as for you and Matt. You are not forgotten, by your Family or your Father. Traci and GCOC

Anonymous said...

you guys are so strong! we love you and are praying for you and jonah daily!
-nicole & jayson

Anonymous said...

I was up at 3:30 this morning feeding my own little one, praying for you, Matt and Jonah...The Lord brings you to mind countless times a day as I am caring for my 4 month old daughter. He prompts me to pray. Your story, even as it is unfolding, is an inspiration, a testimony of God's faithfulness and mercy. The Lord blesses his people with peace. He binds up the brokenhearted. His tender mercies are new every morning.
Praying for you in Indiana
Aimee
(My mother-in-law has a friend whose son is the childrens minister at your church.)

Barbara said...

Prayers are going up for your precious little boy and his family.....praying for healing and strength for you all!

I'm The Momma, That's Why! said...

That's a great article. It just may bring a little more attention to your situation - and someone with more answers may find you because of it! You two are so well spoken.

Still hoping and praying,
Grannie in Florida

Anonymous said...

Matt and Patrice, I just read Jonah's debut, and I found myself having a hard time reading, due to all the tears running down my face, tears of sadness for what your little man is going thru, and tears of total awe of you both. Your faith and strenght are such an encouragment to so many. I am lifting up prayers, for healing for Jonah, and peace and comfort for you guys. God is working in a mighty way thru your family,and he will receive the glory, thanks to you both for seeking his face daily.

Love and hugs to you both
Gina

Melissa said...

I worked in Japan for two years (my husband and I moved there for fun..lol).
Anyways, EB seems VERY common there. I never knew what it was until I came across your site. Some of the kids seemed to have really dry skin and dry arms with small cuts (remember these were junior high school students)...besides that they were normal.
Anyways, once when I was working at Kindergarten I was able to meet the most DARLING girl who I am guessing had the most severe type. Her arms were in casts and she had trouble moving fast but that didnt stop her from involving herself in the very active English songs (stand up sit down..etc). Anyways, she was a doll..her mother would come to class with her and she had a helper but she seemed to live a completely normal life. The other kids accepted her as she was and she seemed like a happy 6 year old.
I am just telling you this because I know EB is rare here, and there may not be many examples of older EB kids...so I wanted to tell you that I have met one...and she was super sweet.
:)

Anonymous said...

I read Jonah's article in the Journal this morning and the song "Tell the World" came in my head - "Tell the world that Jesus lives, tell the world that, tell the world that..." and your sweet little boy - his name is Jonah! The same name as that dude in the bible who God sent to "Tell the world" - or another place - of Him, the God of Israel (yes, there's more to the story in the Book of Jonah, but in the end, he did do what God sent him to do). Does he have seminary school in his future...?? do they give full ride scholarships for EB Survivors?!

Still praying for you and for your little "missionary" (via mommy, of course)! May he eat like a sumo wrestler and watch his Mommy and Daddy like a hawk today!

Mira said...

Great article. I think about Jonah alot. I am continuing to pray!

Anonymous said...

Matt and Patrice,
I am praying for strength for the two of you. I know that your Faith will sustain you, though even the strongest Faith cannot take away the pain and fear. So, I pray that Jonah's eating and weight will continue to improve, that he will be free of infections, and that the doctors will find the best ways of handling his condition. I will pray that you have the strength to learn to burp Jonah and change the dressings, and that your love for each other and your son will sustain you, as the love and prayers of so many continue to surround you. You have found a place in my heart and I will pray for you as often as I can.

Anonymous said...

Greetings and prayers from Pakistan and the missionary community here. My contact with EB came from a child in my second grade class in the US a few years ago. Bandaids and sympathy seemed to handle most things and I think she had some trouble eating fruits with citric acids like oranges. Well, you have our prayers and with the time difference they are mostly prayers while you and Jonah are asleep.
Sophie

The Burgess Family said...

Prayes that you have some peace and that your fears are calmed when you get to the hospital this morning!!!

Anonymous said...

Guess what- the story of this blog as made it to CNN!! Under iReport, click "latest stories"!!!

Jennifer Bradley said...

Hi Patrice!
I saw the article about Jonah in the paper today and just wanted to let you know that we're thinking about your family and hope for the best possible outcome for Jonah. I work at the hospital (actually with Dr. Block's wife, Linda), so please let me know if there is anything I can do...bring you a cup of coffee or lunch...anything at all! My work number is 716-6478 (6-6478 if dialing inside the hospital). Best wishes to you all!
Jennifer Bradley

two red heads and two brunettes said...

I woke up in the middle to put one of my four little girls back to bed and thought of Jonah. I prayed for him. Isn't it amazing how the Holy Spirit works that way?!

Kristine said...

After all that we've been through with our little girl. We almost lost her to Meningitis and spent 2 months in the hospital. My advice would be to try and get Jonah into a large, teaching hospital where he would be getting the best of care. Level of care can make all the difference in the world. I'm not suggesting that you're getting poor care where you are right now, just that there are levels of expertise and funding that make the experience very different.

Keila said...

They did a great job on the article. We are thinking about you! Even Marley the pooch hasnt had an appetite.

Anonymous said...

Not only is this story in the journal, it is on CNN now!

http://www.ireport.com/docs/DOC-226062


Prayer Warriors unite!!

Laura said...

I thought the article did such a nice job telling Johan's story. It's crazy to think how many more lives are going to be touched by sweet little Jonah's story and how many more prayers our going to go up to God on you all's behalf.

Praying for Jonah's continued healing and peace to shower down on all of you.

Laura S.

nancy said...

CNN........it really is! How awesome! Such a touching article by them and sharing Patrice's testimony with the whole world and at the same time there will be millions praying for Jonah! God is getting his message out to so many lost souls because of this angel named Jonah.

Nancy Lee

Rose said...

Praying for Jonah, sweet baby boy.

Anonymous said...

Jonah - ALL of you - have prayers coming your way from Batavia, IL. May you find comfort, peace and complete healing. I have always found truth and comfort in these words
---WHEN GOD LEADS YOU TO IT, HE LEADS YOU THROUGH IT--- You are all precious in the eyes of our Lord. We will join our prayers with the thousands being offered for all of you. GOD BLESS YOU!!

Anonymous said...

Have you considered contacting Mayo Clinic and/or St. Jude Research Hospital? Arming your self with knowledge and advice will be important. You are in our prayers.

Anonymous said...

Patrice - I have been following Jonah and praying since last week. I was so happy to see you write the words "take him home". We all know that day will come! I have had many health problems this last year and had fallen from my faith. Seeing how all the prayers for Jonah have worked has helped me to remember that our God IS there. Jonah is already making a difference in people's lives. Thank you and PLEASE keep sharing!

Anonymous said...

Patrice and family...I read the article in the Journal this morning and am praying for you and Jonah. Know that Jonah and yourselves are always in God's hands. Even in that midnight hour when it looks the darkest...He is there wrapping you in His arms. And I am SURE He is holing little Jonah while you can't. I don't know you personally, but in Christ you are my sister. So, know that I am sending this to all my praying friends and we are all holding your family and little jonah up to our God daily!!

Tish

Cindy said...
This comment has been removed by the author.
Silvia said...

You're not alone honey. My first baby was also stillborn at full term, followed by a 8 week miscarriage and then by the birth of Nicky with RDEB, which doctors told me would die before his first birthday. He is now 12.
If you would like to chat more I am online... myspace.com/ebmom or ebinfoworld.com

God Bless,
Silvia

Cindy said...

How wonderful it is to see how God is being glorified through all of this and his Kingdom is growing because of Jonah. Patrice you such a strong strong woman who is inspiring so many. Thank you so much for allowing the world to share in your joy and sorrow...you have increased my faith so much. Through you I have seen all things are possible through our great provider. I am brought to tears most days as I read for sadness for you family but also joy as I see how good God is. Through this I feel my faith has been challenged due to its mediocrity, but has increased daily as I see all that God does. Thanks for your openness you are touching my heart daily!

Anonymous said...

Hi, try not to freek out every time he won't eat. I know thats really hard being a NICU mom myself. Just try to remember that they want him on a schedule..their schedule and he has his own ideas. Did they mention if he might have silent reflux from laying flat. Its hard to digest food when your on your back all the time. Anyway I found you website through Kaleigh anne freemans. I'll keep little Jonah in our prayers..its amazing what they can do!
-Nina

Anonymous said...

Patrice & Family,
I hope you don't mind that I wrote an iReport article about the blog. I have been so touched by your site and story that I wanted to share. I'm hoping the extra coverage might reach some doctors or other knowledgable people that might be able to help.
I'm not as eloquent a writer as I wish I was, but I know the Lord will make up for what I lack, and touch the hearts of those who need to be touched.

Simba9960 said...

Patrice~

Trust those motherly instincts!

Bianca was the same way when they told me she probably needed a blood transfusion. Sounded scary but it really isn't too bad. She got the transfusion and was the cutest little candy apple red faced baby in the NICU! =) Okay so I might be a bit biased w/that comment! That night she was still acting a bit lethargic and I was concerned. Even more than the day before. I had them swab an open wound and get it cultured. It came back as an infection. That's when we started a 21-day rounds of antibiotics. At first nothing worked but then after the 4/5 day she was doing awesome. Then it was the periodic running around because she was becoming so strong that she was pulling the line out! Ohhhh boy did I just get a flashback!
Anyways go w/those motherly instincts! They never let you down!
BTW great article! I absolutely loved it!

All our best
~Sally

Stephanie said...

Go, Jonah, Go... Preach the gospel without saying a Word. Your impact is astonishing. Eternity is being rocked by you. Please know how much God loves you and your parents.
Go, baby, GO!! Keep Fighting. You are winning spiritually and we are all praying like crazy for you physically.

Tears are streaming down my face as I continue to pray for you to be healed. May God hold your mommy and daddy by His mighty Right Hand as they walk through this valley of darkness.
Remember, that is where He annoints our heads with oil.

If only we could see... if only we could see!!!! what is REALLY happening through the life of this precious baby. Some things, as Job said, are too wonderful to know.
"Surely I spoke of things I did not understand, things TOO WONDERFUL FOR ME TO KNOW."
Job 42:3


Go, Baby, Go... Keep preaching the gospel!
He is coming for us.
AND WE ARE STILL PRAYING HARD IN TN.
May miracles, blessings, peace and love FALL in that hospital room as Jonah goes into all the world preaching the gospel.

avbernat said...

I'm praying that Jonah does not have any more obstacles, that infections will veer away from him and that he will only gain strength from now on. When my son was in the NICU, I remember him never taking his feedings for at least a few days. Each day, with every feeding, I grew more and more worrisome and felt much guilt for what had happened to him and why he wasn't eating. But I was determined and finally after a week he started to drink his milk and his tube was taken out. I know how difficult it is to not know the unknown, but remain positive and remain hopeful, your little man will need you to be strong for him. I'm praying for you and Matt, to trust in Him and to remember that we all bear the same worry WITH you and we all are praying WITH, FOR, and Always with you. Patrice and Matt, you have a fighter in your hands, we have no doubt that after this long journey you will be able to hold Jonah in your arms and kiss him endlessly.

I'm sure his lack of intake was due to him being so drugged up on meds. Some babies (even ones that come home healthy) go through these spurts of long sleep. As long as he is hydrated and eating in some way or another, I'm sure he's fine.

Give all our love to Jonah, lots of butterfly kisses and tons of hope. Whisper to him that we are all rooting for him and we all cannot wait for him to come home healthy.

j3k said...

Many prayers are going your way from our whole family. I wake up in the middle of the night just to check on my sleeping children so I cant imagine what it must be like for you. I'm so sorry you have to go through this! I find myself praying for him when I do my nightly checks of my children and with every prayer I say I close with an extra one for Jonah!

Hearts and Hugs
Marie

Wendi @ Every Day Miracles said...

Wow. That's almost all I can say. I was directed to your blog today through some one who had read my blog and knew of some of the struggles we have faced with our son, born 15 weeks premature.

The way that God's power shines through you guys is amazing! you have a wonderful testimony.

I know this is a rough time. I so well remeber the roller coaster of the NICU - all of the hoping and wondering.

May God be your strength. Praying for you!!

applesofgold said...

No worries! Babies sleep alot at first. I had to wake mine every 2-3 hours or so to eat...and sometimes they just were simply too tired to eat...they would just doze off again after just a couple of sucks... You too will break into your own routine in your own time. And you will learn to sleep when you can. Praying for you!

Anonymous said...

Patrice and Matt,

I just wanted you to know that I have you in my thoughts and prayers! You hang in there, God is a big God. I had to go out and buy a paper today when I saw Jonah on the front. I miss him, and can't wait to work again.

Sabrina Doan

felixfantasticfour said...

I found your blog through another blog, and wanted you to know we are praying for your whole family, for the Lord to heal Jonah and give him comfort, and for wisdom for his doctors.

I woke up in the middle of the night with a need to pray for him, and when I checked your blog this morning, I realized that was when you were writing your latest post. The Holy Spirit connects us, gives us the words, and the groans, when words cannot express.
God is good--all the time. He'll be your Rock in those hard times.

Praying for you in Utah,
Sharmilla Felix

Anonymous said...

Hey Patrice -
I came across a verse in my Bible study (Beth Moore's Stepping Up - Psalms of Ascent) that made me think of you, so I wanted to share it with you. Psalm 126:5 states, "Those who sow in tears will reap with shouts of joy." The study points out that this is not just presented as a possiblity, but as a PROMISE from God... You've definitely had more than your share of tears over the past year, but in them you have continued to praise & glorify your Lord and savior, and in doing so, have been 'sowing' his Word. I've noticed, so I think it is safe to assume God's noticed too. Only He knows how long your journey of tears may be, but you will reap with SHOUTS of joy in the end (kinda like your raising the roof verse the other day!). I can't wait to see it!
Stay strong, and take care of yourself. When I worry about my little ones, I have to remind myself that they have a Father who loves them even more completely than I do (soooo hard to imagine!), and He's in control so I don't have to be.
Jonah is in my constant (and I really mean constant) thoughts and prayers (as are you).

Love,
Melanie Warner Peden

Anonymous said...

I read about your darling son, Jonah, on a link on my Facebook page. I hope and pray that you feel supported by your faith, family and friends. I lost a little boy at 3 months from an undiagnosed syndrome and so I can relate to your loss of Gabe. Be strong! Don't be afraid to cry. Some days I used to be fine...and then I'd cry bucketfulls! I hope and pray that the Drs. will continue to help baby Jonah. Blessings from England.

Anonymous said...

God bless you and yours Praying for all of you.

Laurie said...

Patrice, I was introduced to your blog 1 week ago by my sister who has shared your story. We have had such a burden to pray for you and your family. There have been some days reading your blog that I just can't control my emotions because I feel your pain. My daughter was born with brain issues and the unknown was so scary to us. I think the reason I am so emotional is that you also address my deepest fear... losing my child. I sense that in the night and I'm sure many times during the day, the devil uses this fear to try to weaken you. My prayer for you is that during these times, you will be able to meditate on the Lord to give you a peace. He is the only one who can! Psalm 61:2 "When my heart is overwhelmed; Lead me to the rock that is higher than I" Psalm 63:6-7 have also been important verses to me. I believe God's purpose is more far reaching than anyone can imagine. I am praying for you for strength, hope, and understanding!

Anonymous said...

have been thinking and praying for your family! sending our love from the colorado rockies!

Anonymous said...

I read the article in the paper about Jonah and it broke my heart. I am a mother of 3 little girls of which one was in the brenners childrens hospitol last June for over a week due to a head injury. I have to say your child is in a great place and you are already being blessed by the care your child is receiving. The staff there is amazing and very supportive some of your prayers are already being answered. Keep your heads up and stay strong. God will never put more on you than he knows you can handle. Your family is in my prayers. Summer L. Galax, VA

Megan Lynn said...

Sweet Patrice, Your love of Jesus and praises to Him in the midst of this makes me cry. Praying for y'all ALL the time and just love you so much. Meg :)

Alisa said...

I don't even know if you will get to my comment as you have so many but I, my husband, and my children pray for Jonah everyday. As I've mentioned before, our infant daughter is having medical issues as well so every time I read your entries my heart aches for you. We pray for healing for your sweet baby and strength and peace for both of you. I have been where you are. Wondering if I should be at home catching some sleep or beside my baby in the NICU. Wondering if I'm being paranoid and overprotective or just a good mother. A nurse once told me, "You are always being the good Mama."

“Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings.”
Psalm 61:1-4 (NIV)

Andrea and Andre said...

Hey guys!
Just wanted to let you know we are following the progress and praying unceasingly. And I'm not the one who told you this, but Andre MIGHT have cried once reading the updates. Or it MIGHT have been multiple times!
And on a lighter note--it was a great picture Patrice! No need to have worried!

Kristy said...

Hi Patrice & Matt:

Your blog was forwarded to me by a friend. We are in Knoxville and our EB baby just turned 6. Carson was initially diagnosed with RDEB because of the severity of his blistering, but we soon learned he has a severe form of EB Simplex. I will continue to monitor Jonah's progress and we will be praying for you. Feel free to contact me through our blog if you have any questions or just want to talk to another mommma who has been through it.

Kristy

Tracey said...

Found your blog via FB Prayer Group. I want you to know that I will pray for your little one. I will pray for your and your husband as well. I will be following you via blogger. I would like to post about your story and link back to your blog. Hopefully we can send up a few more prayers this way. Hang in there and I will be back to visit you soon.

RZ said...

Fabulous article!! I did a bit of research on Jonah's condition because I'd never heard of it before. Jonah is one special little boy and he's going to change the hearts and minds of millions!!

Anonymous said...

Dear Patrice and Matt,
I have been so amazed and humbled by your strength that you have every day. It is so evident by your actions and attitude that Jesus Christ is Lord of your lives. I know that just as Jonah in the Bible that God has a huge plan for your little Jonah; and that is evident already by all of the thousands of lives that he has touched . I feel so honored and again humbled to be one of the fourtunate ones to know Jonah personally. My life has truely been touched by your son.

Continually thinking of you and praying for you,
Your nurse, Stacey

Anonymous said...

I just saw the pictures of ya'll holding Jonah today. Kim posted them on Facebook already. I look forward to your blog update. God is so good!

Brandi Koontz

miracleshappen said...

My 4th child (a girl) had to undergo open heart surgery for a severe CHD at just 9 days old. She wound up being in critical care for 6 months. She wasn't supposed to live and many doctors doubted she would even come out of surgery alive. She has had her second stage heart surgery back in Sept. and she is doing great. She is 14 months old and can sit alone, scoot around a little on her bum, says "Mama" and "Dada", loves Mickey Mouse clubhouse every morning and is our family's shining star. Hope is everlasting for parents even when we are told there is none. The NICU and PICU experience miracles everyday. Recoveries that just can't be explained by medicine. Let God be your strength and know that His plans are glorious!

Cathie said...

My eyes are full of tears...b/c I woke up around 4 am this morning.
I got up and took some medicine (xanax - which if no one has offered you - they should...just to take the edge off...) and as I was in the family room getting myself some water - I thought to myself - "Lord, you may have woken me up to pray for Jonah..."
So - I did. Now, I see your post - and I"m sure that was why He had me up...
hang in there...
Love - cathie

Cathie said...

My eyes are full of tears...b/c I woke up around 4 am this morning.
I got up and took some medicine (xanax - which if no one has offered you - they should...just to take the edge off...) and as I was in the family room getting myself some water - I thought to myself - "Lord, you may have woken me up to pray for Jonah..."
So - I did. Now, I see your post - and I"m sure that was why He had me up...
hang in there...
Love - cathie

Tracey said...

Just wanted to let you guys know, I heard about Jonah's story through a friend's blog and have constantly had little Jonah on my mind since. Your family will be in our prayers, not only for Jonah to heal, get stronger, and be in his parent's arm soon, but for you and Matt too. You both are amazingly strong people that are an inspiration to all of us.
Sending prayers from Virginia -- can't wait to see the picture of you guys holding little Jonah!

LisaL said...

That was a wonderful newspaper article. Jonah is so beautiful. Praying for strength and rest for you and for him. You know God is with you.
Lisa

Kelly said...

I just found your blog a few days ago, and I just wanted you to know that I am praying for your little boy. He's absolutely beautiful, and I know God is holding him close right now. I pray for comfort and healing for Jonah, and peace and understanding for you and your husband. God bless you.

Dores said...

i will pray for you and matt's peace of mind tonight! thanking God for everything.

also, i just want to let you know that i think of baby Jonah all the time.

have a good night, patrice and matt!

Dores from the philippines

southernmother said...

Precious family...just lifting each of you up to our almighty and everloving Father. I love a promise in Isaiah "...no weapon forged against you will prevail, saith the Lord..." What weapons seem to be waging against your sweet family, but He is a strong fortress and has plans for each of you beyond anything we can imagine.

Much love to you all...and bless you for allowing us to be in the battle with you.

Susan