Saturday, March 7, 2009

jonah - saturday, march 7th

Today has been a VERY busy day.

It first started with rounds where we discovered that Jonah's WBC count is back up to normal, and soon he may be able to be in an open-air bed. His stats are looking really good, and we've increased his feeds to 20 cc's per feeding, and he's getting 4-5 cc's in his feeding tube per hour.

Then I got a surprise visit from Megan (one of my great blog-readers) as well as some of our friends from Greenville who came here to pray for Jonah IN PERSON. We had lots of other visitors today, but I've totally lost count. :)

Then we had a birthday party on the 12th floor open terrace for Shaina's birthday. Ainsley's birthday is tomorrow, so we were supposed to have a party for both of them, but Peyton is sick, so decided it better not to come. I hope to see the kiddos soon, because I miss them desperately. Hopefully everyone will feel back up to 100% by next week. I need some Asher and Ainsley snuggles in a bad way.
Beautiful Shaina...
Matt and I went in to watch the doctors change Jonah's bandages today. It was not as heart-breaking as I thought it might be, but he was on about 3 shots of morphine, so he wasn't in nearly as much pain as he would have been otherwise. I'm glad the first time is over with.
Check out Jonah's new bedding.
We thought this might keep him from thrashing around so much and causing so many new blisters. I guess it's the closest thing we can get to swaddling - he just seems like he wants to be wrapped up tight... which leads me to the biggest part of the day (and why we've been sooooo busy)...





Please continue praying for Jonah's eating. In the last day or so, it seems he's completely forgotten how. I worked and worked with him to get him to eat his 8:00 bottle, and maybe he took half... and that was only after doing the bait and switch with his paci. I'm trying to be positive, but I have to admit this is completely frustrating. I just want to get that tube out!!!
But hey, overall it's been a very positive day, and I couldn't be happier about his WBC count. He'll continue to be on his antibiotics until the 7 day cycle is over (today was day 3), just in case. But we should be able to hold him regularly now as long as nothing changes. It was great healing for Matt and I to be able to hold him today, and I hope it was for Jonah too. Everybody needs a little lovin' from time to time. :)
Today's shout-outs:
- Dr. Furlong and Tonya for doing such an awesome job on Jonah's dressings. I am so amazed at the skill and patience it takes to do this. It took them almost 3 hours. I can't imagine being skilled enough to do it at home, but I'm sure by the time we bust this joint, Matt and I will both be pros.
- Dr. Tony who was so great at soothing and loving on Jonah during his dressing changes - was so patient and kind and kept Jonah relatively calm through the whole process. Without his soothing Jonah, Jonah and I would both have been complete wrecks, probably me more than him. I'm not nearly as tough as he is.
Thank you for continuing to pray. We still have a very long road ahead of us, and it just seems likes it's 3 steps forward, 2 steps back a lot of the time. But hey, we still net 1 step forward, right?

109 comments:

lov said...

praise be to god for such an amazing day! :)

Chris Hilton said...

My first time reading this WITHOUT TEARS and a big smile on my face. Great day!

Cathy Meister Melton said...

I am crying as I look at those precious pictures. What a joy it is to see you be able to hold that sweet, sweet boy! Praise the Lord for such a wonderful day! The article was great and I know that heaven is being flooded with many prayers for you all. To God be the glory, great things He has done...

Megan said...

Tears of joy fell when I saw Jonah in both of your arms today. What a huge blessing that must have been for you all. May the Lord continue to strengthen and protect your sweet boy.

Jennie said...

I'm SO SO happy you guys got to hold your sweet baby today!! What GREAT pictures! Praise God! Hang in there. Still praying for a miraculous day!

brightleigh said...

I am so very happy for you guys! How therapeutic to be able to hold Jonah! I am sure it was therapeutic for him as well! Patrice--you look GREAT to have just had Jonah a week ago! I am NOT just saying that. Matt--I am very happy that you got to hold Jonah--I was scared because of your wrist. I am glad you all had a great day, and what a great post. Praise prayers going up as are requests for infection prevention, continued healing, strength and peace for you guys, and the ability to sleep tonight. Much love to you!

dmelen said...

I just came to your blog from C.C. at The body of Christ. I am without words. But the prayers for Jonah and your family are just pouring out of me. Hold onto to that beautiful little guy,
Dawn

Anonymous said...

Yeah Jonah!!!! I am so happy that everyone got some snuggle time today. I cried today to see you finally be able to hold him. He looks great!!!!
Lindsay

Shannon said...

This makes me cry! I am so happy for you getting to hold your little one.

ashpuck said...

Congratulations on getting to hold your precious Jonah. By the look on both of your faces, I'm sure it made your day.

~praying for Jonah,

Ashley

avbernat said...

You have no idea the amount of tears that just poured down my face after seeing those photos of you and Matt holding dear Jonah. I am overjoyed by the fact that you two got to hold him and kiss him. Hopefully that "lil' lovin" will motivate him to take in more feeds. Continued prayers for little Jonah, Mommy Patrice, and Dada Matt!

Lovely life of Jennie said...

Oh Patrice!!! Those pictures are so wonderful to see!! What a wonderful feeling for you guys!! I have got to come by soon! Always praying for you!

Alison said...

Your family has been on my heart all day today. Thank you for so faithfully posting. It is such a blessing to see prayers answered. And what joy seeing you guys able to hold Jonah! He is so adorable. We are praying for you all.

Alison

Anonymous said...

Tears of joy!! My mommies group has been following your story since someone mentioned it at church. So glad to see such a happy day for you guys!!

LoveLladro said...

It was so heartwarming to see you and Matt holding Jonah! What a great gift! We will continue to pray for steps forward! Thanks for keeping us so updated!

Jane said...

Could hardly wait for you to post tonight. As I sat here and saw pictures of you and Matt holding Jonah, tears rolled down my cheeks. Such a sweet blessing for all of you and for us to see. The prayer warriors are doing a good job and I am sure they will continue. The article was great in the paper today, I have shared it with many and I am sure it will reach so many more that want to pray for you. Keep up the good work and please try to get some rest Patrice, that is very important. My prayers are continuing for all of you and that tomorrow will be even better than today.

Desha said...

YAY!!!!!! It is an answer to my prayers that you were finally able to hold your little man. He looks so amazing today! Good job, baby boy!

Anonymous said...

I'm crying at my computer right now looking at you holding your precious baby. I have been praying specifically for that. I just know that God is hearing the prayers of His people. He always done.
Many blessing to you!
Daisy (alabama)

Michelle McCrary said...

What an amazing story this strong little man has to tell his children one day. You are such courageous parents and I can not even began to imagine the roller coaster of emotions you ride on day to day. I am praying for sweet Jonah and your family.

Blessing,
The McCrary family in Linwood, NC

melanie said...

The smiles on your's and Matt's faces say it all! So happy for you!
Jake and I enjoyed our visit today.

1 batch of Magic Cookie Bars for Matt.
1 gallon of REAL sweet tea for Patrice.
Seeing Jonah....PRICELESS!!!

Laura said...

I heard through Shaina's status that you were getting to hold Jonah today. Couldn't wait to see the pics. So glad to see the happy parents. I'm sure that time was priceless!

Anonymous said...

Oh, to see the smiling faces of both you and Matt holding your precious baby Jonah! What wonderful pictures...Jonah looks sooo much better. Yay for a normal WBC count and no infection. Praying that Jonah starts eating more and not needing the feeding tube. Stay strong and positive. Lots of good, encouraging things happened today.

Gail,
Annapolis, MD

AmberS said...

Patrice! I got tears when I saw you and your husband holding your sweet baby! I am so happy for you.
I pray God will still continue to work miracles in your little mans life. God is good all the time, and all the time God is good!

Lindy said...

I've been reading everyday, literally crying out to God for you and your precious son as so many are. He is listening! What a wonderful God we serve. A normal WBC count and getting to not only hold him, but also kiss him! Praise God! My prayers will continue! God Bless you guys.

Anonymous said...

What a beautiful day to FINALLY hold your son. I remember the day I was able to hold my son for the first time when he was a week old too. And it's the same day your son makes the front page news! Our Minnesota prayer group thinks it's hysterical that cute little Jonah could have been bumped because of a little snow. We're glad he wasn't or we would have had a few words for the news media. Continuing to pray to the One who holds us all in His arms. Dawn M.

Brooke and David said...

Tears ran down my face as I gazed at the pics of you guys holding and kissing your little man! I know you two must have been elated! Praise God for a positive step forward!

Just like many of your other readers, I don't know you, but you cross my mind an awful lot during the day. Praying for Jonah and his mommy and daddy. I pray you will both be given strength and peace.

Baby Bird said...

Hey guys...I am sitting here praising God and rejoicing with you and crying...so happy that your day brought many, many victories!
Kiss that sweet little head and praying you rest well tonight:)
Love and continued prayers!
Aimee

Amy said...

Yay! Doing the happy dance. It was a good day. Sleep well tonight! Peyton was feeling better when I got home so it looks like we'll see ya'll tomorrow...maybe around 5? Kiddos are doing good too, so snuggles will be yours for the taking.

Sarah Crump said...

matt, do you have magic cookie bars?!?

...we'll talk tomorrow.

Ray said...

I saw your story in the newspaper today. I know this story will have a happy ending!

Rae-Ling Lee, NC

Jenny said...

I am so happy you got to hold Jonah today!

Jackietex said...

Patrice, three years ago I had to do wound care on my daughter after a terrible SeaDoo accident that resulted in nearly losing her leg. Without God's help I could never have given her the care she needed. I know that you will always have Him at your side, giving you strength and Jonah comfort. Peace.
Jackie

Hannah laws said...

Hey I am so glad that you guys got to hold him

Anonymous said...

Yay!!! I'm so happy for you that you got to hold Jonah. I can't wait to meet him.

Lauren H

Katherine said...

M&P, I started crying when I saw you holding Jonah! What happy, happy tears. I am SO THRILLED.

Grayson called me while I was out today to tell me you were going to get to hold him, and I couldn't contain myself ... it was SO GREAT!

I was at a scrapbooking crop, and I heard some people at the front of the room discussing EB. I went up to them and asked them if they knew a child who had it, and they are nurses at Children's here in Birmingham. They DO HAVE a child with EB in the NICU now, but GET THIS. THEY KNOW JONAH.

They were telling me that a woman who works in the unit had pulled up your blog and shared your story with them. She was beyond surprised to find out our connection! I know that at least 20 of my local friends have circulated the prayer request to their churches and Bible studies, and several people who read my blog have let me know they're praying for you all, but it was too bizarre to have Jonah come up in conversation today with strangers!!

His story is being heard, and the Lord is being glorified through you all.

Love,
Katherine

Crystal said...

i'm also live in NC, near the outer banks. he is a beautiful baby, and i am so happy you got to old your beautiful son today. (:

RLR said...

What a glorious day! Beautiful photos!

Natalie said...

The pictures of you guys holding him brought tears to my eyes! How beautiful.

Kristie said...

All I have is one word to describe how that post makes me feel................WOW!!!

See what a difference prayer makes, I am seeing and learning this every day.

Give Jonah a kiss for me...and tell him Jesus loves him!!!

Kristie

Hoosiermama said...

Hi there. I just found your blog through another....... I wanted to say congratulations on your precious baby boy. I haven't been where you are, but am praying for you now.
Strangely, I finished reading a book tonight called Tough Cookie. The story, written by a mother, Lillian Sparks, is of a boy with Epidermolysis Bullosa Dystrophica. It's an incredible story, she is honest, and the stories are hard to read, but her faith in the Lord is amazing. I would more than happy to send it to you if you haven't read it yet. Just let me know. Blessings!

Stephanie said...

WOOT! WOOT!!! you held him!!!!!!!!!!!!!!!!!!!!!!!!

I can sleep better tonight. Thank you for this post.
HE IS SUCH A BEAUTIFUL BABY.

P.R.A.Y.I.N.G.
Steph in TN

Renee said...

Jonah is beautiful. May the heavens be stormed with prayers for his healing.

Stephanie said...

ps I have over 100 Worship songs on my playlist if you ever need some praise music at the hospital.

The Burgess Family said...

Horrrrrrayyyyyyyy and Praise God for being able to hold that sweet little boy!!!! Does life get any better than when you are holding the world in your hands!!!

Mandi said...

What beautiful pictures of you and your husband holding your sweet baby boy! I've been reading your blog and praying for sweet Jonah! God does amazing things. I love reading about your faithfulness in God. I'm struggling now with trying to conceive and find stories of such great faith a total inspiration. Continuing to pray for the day you get to bring your baby home!

Leah said...

Congratulations on getting to hold Jonah! I'm so happy for you guys. It's important to remember that the things so many people take for granted are so very special.

Sara Jo said...

oh what a wonderfully blessed day! Patrice & Matt - your positive outlook and amazing strength continue to bless me each day. Thank you for being a true vessel for the Father, Son, & Holy Spirit. we are praying for you all constantly!

Tiffany said...

What a wonderful day!!! Im so happy for you guys, I must admit that I have been reading and praying for you guys since MckMamma posted about you guys, but seeing you guys with your sweet little Jonah brought me to tears,we are still praying for you.
Tiffany in TN

Ryan, Kim and Caroline said...

Dear Patrice and Matt,

I've been closely following your blog and fervently praying for your little warrior. I've been hesitant to comment, but after seeing pictures of you holding your precious gift from above, I just couldn't hold back any longer. Jonah is an amazing little boy and will no doubt continue to amaze us all as his condition improves. Keep your chin up and stay on your knees! I pray God brings you out of this valley very soon! May He be glorified!

amber said...

oh I am SO glad you got to hold precious Jonah today! Praying for more and more progress...one step at a time!

Misty said...

Congratulations on being able to hold your sweet beautiful baby boy! I love looking at the pictures of mommie and daddie holding and kissing on Jonah. Such a blessing that is! Praise GOD!!! My family has been praying for Jonah ever since hearing about him for the first time Wednesday night in church. I've also been following your blog. I love reading everyday about the improvements he has made. Keep your head held high mom and dad, we serve an AWESOME GOD who ANSWERS PRAYERS!!!!!

Tracy said...

Tears in my eyes seeing you hold your beautiful boy!! What a blessing!!

Tara Baba said...

I know you don't know me but I got your blog from a friend, Jennifer Lewis. I cannot begin to tell you how much you and your family have touched my heart. You are stronger than you give yourself credit for. I read your blogs and am amazed at your strength. Seeing the pictures of you and Matt holding Jonah brought tears to my eyes. I am so thankful you guys were able to have that today. Jonah is a beautiful, strong little man and I believe God will pull you all through. Jonah is in my prayers and thoughts throughout the day and I will continue my prayers for him, along with prayers for you and Matt. Good luck to all of you!

Anonymous said...

Praise be to God. He looks awesome and what a blessing to hold and be held. Continued prayers for his healing and for good test results when they come. God bless you all!

Deanna

Becki said...

Patrice and Matt: We are keeping your family in our prayers. Jonah is a beautiful baby with so much support and love surrounding him.

God Bless....Becki VanderKlok

Brooke said...

Praise God for the normal WBC and the increase in feeds. Praying hard that Jonah remembers how to eat again and is hungry for more so the tube can go!

The pics of you guys holding him brought tears to my eyes! God is SO good!!!

Kathy said...

God bless you. Our family in Birmingham, AL is in prayer for yours.

Anonymous said...

God bless you all!! Your love for Jonah and your love for the Lord is a true testament to us all!

Anonymous said...

Hi Patrice,Matt,and Jonah:
Great news that you got to hold your little man today. Thanks for sharing those precious pictures with us.

Your entire family is in my thoughts and prayers. Stay strong Williams family,we are here with you walking right by your side loving and praying on sweet little Jonah.~Darlene

Carrie said...

I am praying for your family and sweet baby Jonah. You are a remarkable young couple. I always hesitate to give medical advice to strangers, but am going to run something by you as a way to maybe increase his intake of formula. I am a speech therapist (SLP) and focus my clinical work on evaluating and treating swallowing disorders (just so you know where my recs are coming from. If the switcheroo from bottle to paci has worked well- my thought is that Jonah is having a hard time fighting against the vac. effect of the bottle. Haberman feeders are good, but there is still a lot of work a little one needs to do in order to get the food out. On days when he has had a procedure or morphine gathering the strength and stamina he needs to feed may be too taxing for him. Have you heard of Dr. Browns Bottles? I use them all of the time when I work with pre-term babies. I liked them so much I used them with my own daughter. They are a pain to clean, but they may allow for greater intake. Their venting system eliminates air swallowing and there is never a vac effect to deal with. I hope this helps him and you can get rid of the NG tube soon!! Best of Luck

Chris Hilton said...

OK I confess, I am a smiling comment number two on this page and now after reading the 60 posts above this one I am crying. I realize more and more every day that it isn't Jonah who makes me cry or even Matt and Patrice or Gabe, it's all of the people from around the world who honestly care about a family hurting in a hospital which for a few is near and familiar but for most hundreds or thousands of miles away. you not only care but are involved.

I just received an e-mail from a cousin in Arizona who contacted a friend in San Fransisco who forwarded information from a very recent conference on EB for me to forward to Matt. Granted he is family but the lady in SF who knows nothing about us leaped at the opportunity to be helpful.

All of you reading this please accept appreciation from the extended Williams/Hilton family. Between Debbie, our Brother Grayson and I we have ten healthy children from a few months old to their mid thirty's and nine health grandchildren. We are blessed. Now in the past years Gabe and Jonah have joined our family. The death of Gabe and the birth of Jonah rocked our world in one way and now all of you are rocking our world in a completely different way. You can't possibly imagine what your involvement means to ALL of us not just Matt and Patrice.

Jill said...

Oh my goodness - Awesome pictures!
Beautiful smiles that make us smile with you.

We love you

Cliff and jill

KristiJ said...

Oh my goodness, I am so happy to see Jonah in your arms. How beautiful and perfect is that! He's so precious, and I continue to pray for him!

Kristi in Virginia

LisaShaw said...

I'm so rejoicing with you as I pray with you for Jonah. I was kissing his little head also.

We LOVE you Jonah and JESUS LOVES YOU EVEN MORE!!!

Mindy said...

Oh Patrice! What a beautiful mother you are, holding your precious baby!! I cried tears of joy for you seeing those pictures. We are all still praying.

Anonymous said...

my eyes filled with tears as soon as i scrolled down and saw that first pic of matt holding jonah...then the tears spilled out when i saw patrice! what a wonderful gift GOD has given you in letting you hold your baby.
we love you and are praying...
-nicole and jayson

Cindy said...

My heart jumped for joy when I got to see you holding your little one, I know you have been longing for that since the day he was born. God is Good All the Time. I hope you get many more snuggles with Jonah!!!
CG

Laura Poore said...

Matt and Patrice,
Praise God for the normal WBC. I was so thrilled to see pictures of you holding your precious baby Jonah. What a beautiful sight. I will continue to lift Jonah and the both of you up in my prayers daily.

Anonymous said...

Yeah for holding Jonah!!! I know it made your day :)

Dana Zucha
dzucha@aol.com

Tracey said...

YAY! For getting to hold Jonah!! I just found your blog 2 days ago and shared it with my husband last night. This morning as soon we got up we had to check with your blog to see how Jonah was!! Congratulations on a wonderful day!! Continuing to send prayers from Virginia!

Jill said...

I see I'm not in the minority with tears of joy for you all when I saw that first picture of you holding him! It seems like such a small thing and so many parents take that for granted, but that's honestly been the most heartbreaking part when I think of you guys. Congratulations for today's vistories - we'll keep praying for more!

Jackie said...

I'm all choked up reading this today and SO VERY excited about you guys holding him!! My Heart is so happy for you guys!!

Tiffany said...

Tears of joy! I am so happy for you all and still praying. I was so excited to hear from mom that you were going to be able to hold him and was overjoyed to see the photos. We are without Internet this weekend so I have been keeping up using Gary's I-phone - you shoud have seen me trying to get to those photos once I knew they were on facebook! We love you all!

Melissa said...

Imagine my surprise to see those pics this morning! I am soooooooo very happy that you guys got to hold him and love on him. Somehow when they're in the bed and you can't hold them it just makes things feel so much worse. I'm sitting here with tears in my eyes looking at the beautiful pictures of you guys together! And I'm so glad to hear about his WBC count, too. Yes, the two steps back are frustrating, but that one step forward you have at the end of the day is a major victory. Hang in there, love on that baby in whatever way you can, and know that you have tons of support behind you!

Misty Rice-Baniewicz said...

Oh how exciting you got to hold him. It brought tears to my eyes.... PRAISE GOD.

Way to hang in there buddy.....

Continuing to pray....this is great news.

Sus said...

Praise the Lord our Father for the blessing of you all being able to hold Jonah...Go Jonah, keep fighting and know you have an army of Angels lifting you up!!!

Hollie, said...

Hi! I hope you don't mind me adding a comment! I have just stumbled upon your blog while searching for my friends'. I'm 24 yrs old and I suffer with E.B too. I'm not sure what type Jonah has (mine is Dystrophic) but either way I hope he keeps improving. I haven't been able to read all the blog entries but I have read the most recent and you seem so positive and that is great. I have seen it too many times where parents can just get buried and overwhelmed by the condition which is understandable but to see you smiling in those pictures is awesome. You seem like such a great family! I wish their were more parents out there like you!

This blog is a great idea too, I'd imagine people going through the same will pick up on this and gain inspiration so well done!!

Goldylocks said...

So beautiful seeing you hold sweet Jonah!

Continued prayers...

j3k said...

Hey its me again!! My tears for you today are tears of JOY!!! I am so happy to see you both getting to hold your precious baby boy. I know you have waited a very long time for that moment. I will continue to pray your specific prayers and I will continue to add my special extra ones for all of you.

Hearts and Hugs
Marie Wimsett

rameelin said...

Thank you Jesus for a great report and your healing hand upon Jonah!

Patrice, the Lord is showing His glory and through this hundreds upon hundreds will hear His name all over the world! How incredible that Jonah's life has such an AWESOME calling for Jesus even now! I am praising Him on your behalf today! What a mighty God we serve!!!

P.S. Jonah looks more handsome than ever today!

Labor & Delivery-FMC said...

Dear Patrice, Matt, & Jonah

This is the Nurses in Labor & Delivery @ Forsyth. We just wanted to let you know we are thinking and praying for all of you. We have been keeping up with Jonah thru the Blog. Keep up the faith and we will continue to pray.

Sincerely,
Labor & Delivery @ FMC

Alisa said...

Hooray!!! What wonderful news. Seeing you hold your precious baby was so exciting. Jonah looked so content in your arms. Hang in there.

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

The count looks wonderful, the new bed looks great - and if momma and daddy grinned any brighter, the sun would be out of business!

Just one more piece of your dream coming true!

Grannie in Florida

jandkland said...

Tears of joy to see you holding your son! I'm so glad he has reached this point. I don't know how you hold up and keep hope through these trials, but you obviously have a wonderful support group! Thanks for sharing your pictures. I will continue to pray.


--Kelley in GA

Tammy said...

To see you get to hold Jonah (or almost hold him) and give him a kiss made my day and made me cry! As you worry about him not eating well, I hope it will help to know that all babies do that to a degree. Sometimes they'd rather sleep than eat.

I'm still praying for your little man, and I requested prayer for him at church today too. May God continue to bless your family, and may Jonah continue to do well is my prayer.

valerie said...

I'm crying again.....
tears of joy this time as I see the improvement in baby Jonah. He looks good. I love the pictures of you and your husband holding Jonah. So precious!
I've been on my knees in prayer since I first read this request on another blog.
How sweet to have blogging visitors!
I hope you feel peace that passeth understanding today.
Love & prayers,
Valerie in Oklahoma

Jessica K. said...

Ohh those are such precious pictures. I am SO HAPPY for you guys! He is looking so cute. I am praying for him to keep eating. I really hope he will be able to get so much stronger through the regular bottles.
You are also looking so beautiful for just having a baby. You are really gorgeous. You guys make such a beautiful family!

You are in my thoughts and prayers!!

Mrs_PJ said...

Praise God. I have been praying for a total restoration of Jonah's skin structure. I'm so happy you could hold him!

Anonymous said...

Hey, Patrice. This is Suzanne, your great-uncle Pete Kiger's granddaughter again. I just read your blog today, and saw your pictures. Please know that seeing your smiling face while you and Matt held Jonah ministered to me like nothing has in a long time. Your witness is nothing short of amazing. The prayers will continue. If you need a little boost, check out the "Voice of Truth" video on YouTube by Casting Crowns. The lyrics make you ready to take on any Goliath!

karrih25 said...

Wanted you to know that I am praying for your whole family! I am so happy that you both were able to hold your sweet baby!
God Bless!

Brendan said...

Dear Matt & Patrice,

We've been thinking about you all weekend as we just heard the news about all of this. Baby Jonah and his wonderful parents are in our prayers.

With love!

Brendan Ward & Ellie Snow

Ryan said...

What a blessing to hold your son!!! As always, praying for your family.

purejoy said...

what a joy to see you holding jonah!! and the look on y'alls faces?? PRICELESS!!
continuing to pray for him and y'all. he is looking really good. whatever they're doing for him seems to be agreeing. he is precious and adorable!
blessings to you from tennessee!

Anonymous said...

Just wanted to let you know of a testimony that I heard today...My friend's grandma's best friend knows a lady who has two children with EB. Both of them are healty, married adults! This all occurred while I was sitting here (on Spring Break in Maryland) and we had just gotten back from church where we lifted Jonah in prayer. The lady that we met did not even know that I knew of Jonah, and she began talking about the condition. I know that this was a sign from God for me to let you and Matt know that everything will be okay with Jonah. He is going to have a long, wonderful life and praise God his Savior. He will be able to speak, sing, and rejoice, and give his testimony to others. He is truly a blessing.

Love,
Chelsea(I also went to SCHS and my boyfriend observing in Mrs. Mc's class.)

Jenn said...

The pictures today brought tears to my eyes. Tears of joy. The look on your face while holding your sweet boy. I am so glad Jonah is doing well enough for you to get to hold him.

I found your blog from MckMama or Angie Smith, I don't remember which, but after poking around realized you are from somewhere near my home town (Walkertown). That deepened the connection I felt for your family. We also lost our first son due to still birth and our daughter spent a couple of weeks in the NICU. So while I haven't walked in your shoes your journey resonates deeply with me.

Many prayers for all of you through this journey.

Courtney Paris said...

Oh how awesome it is for you to hold your baby! Praise Jesus!!!

Amy Reber said...

Thank you God, for the healing power of touch...continue to heal this precious baby. Love, Amy

Kinsley said...

Thanks be to God! You and Matt look so RIGHT holding your little one! He certainly looks stronger, and I hope he is! Your family is now on a prayer list at 4 or 5 different churches in South Carolina. My dad shared the story of your family with them. Continue to be strong, and Jonah will be home before you know it!
Kinsley

Anonymous said...

Patrice,
Attached is an article regarding a bone marrow transplant apprantly cured this disorder. Of course, I'm no a doctor and there are differnt strains and MANY variables to consider, but the results look very promising. We live in MN and have connections to this hospital, so if there's anything we can do, please e-mail me at dawnpi@yahoo.com

http://www.startribune.com/lifestyle/health/19471139.html

Continuing to pray.

Dawn M.

Angie said...

We praise God with YOU for each step taken forward. After spending almost 3 months in NICU with our own grandson---we know the roads of up hill battles well. BUT GOD is there with you through them all!

Continuing to lift your family up in prayer.

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

Wow! That brought tears of joy to my eyes....

Agent M said...

I came across your blog via Kayleigh's Story. I've been reading since Jonah was born. I must say that he looks awesome! You and your husband are incredibly strong people, and I will definitely keep you three in my thoughts and prayers.

fulksfam said...

Oh my goodness... our internet has been flaky and I haven't been online ALL weekend until now, at my sis-in-law's house - and everyone just came running when I started crying at the sight of Jonah IN YOUR ARMS. I have been praying so much for this, Patrice - for you to just hold your little man, and I am so thankful that it is happening! He looks so good and healthy, fewer blisters... thousands of people are rejoicing, I just know it!

Still praying and praising along with you,
Chris and Jessie

Courtney said...

Can I just say that you are looking great for just having had a baby! So glad you got to cuddle that little guy...babies really thrive on those snuggles. Love and prayers to you all.

nancy said...

I had asked to see your beautiful face! Well, how I was surprised when I not only saw your face but you holding Jonah as well! I was totally in awe at the most beautiful sight I have seen in a long time! It did my heart so good! You look amazing, but not as amazing as the angel you are holding and kissing! Each pic I think is the best and then there comes more that are even better! I Love it! Hang in there Patrice!
"This is the Day that the Lord hath made, Let us Rejoice and Be Glad in it!"

Nancy Lee:)

Marie said...

I am so happy that you were able to hold Jonah. I've been smiling with you since I read the post. You are truly amazing. Prayers, hugs and love are being sent your way. Thank you for sharing this amazing journey with all of us. Know that a day does not go by that we don't think and pray for you.

danae said...

seeing the pics of you and matt holding jonah - i burst into tears and laughter at the same time. God is so good, and i am praying that He exerts all His mighty power on the behalf of your baby boy.

love, danae and shaun

clara said...

Thank God you got to hold him!!!

graciela said...

I recently came across your blog and have been reading along. I thought I would leave my first comment. I dont know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.


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