Thursday, March 26, 2009

monday, monday - so good to me

So...

MONDAY'S THE DAY! Jonah's coming home.

Our family conference is today at 4:30 to discuss the details of Jonah's coming home, at-home care, and follow up visits to pediatrician, dermatologist, nutritionist (?), geneticist (?) etc. I don't know who all he'll have to see, but it's ALL worth it.

I can't wait!

144 comments:

The Burgess Family said...

HORRAYYY!!!! Praise be to God for all of the work the doctors and nurses have done as well as all of your outside help that has worked with getting all of this lined up!

Anonymous said...

Wow! That is great news for you and your family! Praying all goes well!

avbernat said...

BEYOND EXCITED AND HAPPY FOR YOU ALL!!!!!!!!!!!!!!!!!!!!!!!


Can't wait to see Baby Jonah AT HOME, IN THE ARMS of his mommy and daddy and all that love him, and WITHOUT TUBES!!!

YAY!!!!

LeeAnn said...

SO excited for you guys! :)

Yamma Mamma said...

Praise God!

Mandy Rose said...

That is such great news!!! I have been following your blog for awhile now, but have never commented. Sorry! I should have told you that I have been praying for your sweet baby for some time now! I am so excited to see the great news and the great progress baby Johah is making!

Sonja said...

Congratulations! That's amazing! You are bringing your baby home.

Brooke said...

Praise God for coming home!! Continuing to pray :)

kathunt said...

Praise the Lord!!! What a blessing for your family! We'll keep praying!

Jara said...

That is just be best news I have heard all day!!! Of Course I will be sending Continued prayers!!

The Wade's said...

I needed some good news today, and I'm so glad that Jonah gets to come home!

Charity said...

Yay!!! That is so wonderful, what a blessing!!!

Emilie said...

I have also never commented before but have been following your story from up here in Maine. Bless you and your sweet boy. Best of luck for the transition. I know that nursery has been awaiting his presence!

Dexter-HS-Class-of-1976 said...

I am so glad little Jonah is going home on Monday! Every time you posted about his fighting with you, tearing off the bandages, and screaming all I could think was that this was a VERY strong and determined young man!

I miss you, Matt and all our GCOC friends. You are all constantly in my prayers.

Love, Janet Caraker (formerly Janet Horton)

Emily said...

That is great news!! Praying for you!

Mike and Molly Spivey said...

WHOO HOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! So excited for you guys!!!!! We are still praying hard for your little man!

Anonymous said...

Praise God. I am so happy for you and your family. I will continue to pray for little Jonah and your family as you go on the road to recovery.

dg darling said...

Congratulations! I hope all goes well. I just had a question. Is there anything they can do to try and "reverse" the condition? Like a stem cell transplant, or donor cord blood or something? Just wondering...

Anonymous said...

Praise the Lord!!!

JAMBA said...

What wonderful news!!! Jonah's in my thoughts and prayers every day.

God is great!!!!

Sarah said...

We are so excited for you guys!! Congratulations!!

Kristi J said...

That's wonderful news!! I just smiled the biggest smile when I saw your post about a homecoming! Continuing to pray for Jonah's body to heal (especially the right side), for his comfort, and for the Lord to give you strength and guidance in all you do taking care of that sweet babe. Praising Him!!

Kirsten: said...

That's AWESOME!!! So happy for the 3 of you!!!

Anonymous said...

Patrice and Matt
I am available to help on Thursdays. I don't have Maddie or Mason on that day. Or if needed, perhaps Maddie and I can run errands on M, T, or F.
I am so happy to learn that Jonah will be coming home so soon. Praise God for his steadfast love. You can get my phone number from Pinedale. WooHoo!!!
Sandy Widener

Aimee said...

Praising the Lord and rejoicing with you!!!
We'll pray everything falls into place. And we'll pray for Jonah's right hand and arm!
The Dennys

Jenn said...

How wonderful!!! I know what it can be like living in a hospital...if you have to deal with stress, there is nothing like home to make it as easy as possible.

My prayers are always with you and baby Jonah.

Cindy said...

What a great day! I am so excited for you and can't wait to continue on this journey with you. I will continue to pray for much healing and for you as you will be undergoing much work with him at home.

But most importantly...God is good all the time!

Misty said...

Continued prayers for Baby Jonah's healing and for you all as you continue to take great care of him! God holds you all in the palm of His loving hands and will continue to guide your way!

Tammy said...

That is wonderful news! You are in my prayers everynight!!!

He is so beautiful!

langhofflove said...

YAY! Patrice! what wonderful news! Praise the Lord!!!

Kelli said...

This is the best news I've heard all day! Praise God!!!

The Foster Home said...

Yay!! I will be praying for a smooth transition and I know he will thrive being at home.

Becky said...

Yay!!! I will be praying it is a smooth transition for y'all!

michelle said...

Woo-hoo! Congratulations! What a big step!

Sarah said...

Patrice,

i am so happy that you are going to get to take your baby home. I know it will come with its own challenges, but things are so much easier to face when you are at home. I will be praying for a great weekend so that it is a smooth transition. God be with you.

Anonymous said...

Praise the Lord!!

Katherine said...

Woo-hoo! I want to dance around in my cube! (I'll try to refrain.) But get ready, girl! Going home will be an adjustment. :) Praying for you already on that front. Can't wait to see pics of Jonah at your house! What a joyful day that will be. Congrats, and love you so much!

Desha said...

YAY!!!!!! That is AMAZING news. So excited for you!

Anonymous said...

GREAT!!!! I remember the feeling I felt when we brought home our preemie after a month-scared but so excited. Still sending prayers your way from Alabama!

Bridget said...

Praise God! Our family has been praying for you and will continute to pray for your family and little jonah.

Nicole said...

Praise God! So excited and happy for you... I am sure you are feeling a little overwhelmed - but truly - there is no place like home. I bet you can't wait! Praying for you still... The Bishop family in Indianapolis

The Buchanan Family said...

That is awesome! Congrats!

Kristen said...

AWESOME!!! Our prayers will continue to be strong for you. :)

Anonymous said...

Patrice- A thought I just had, if you'd like to post the photos, you could do a photobucket, with any and all, ad just provide a link. That way the "tamer" pictures make it to the blog, but the others are available for people who are curious.

Congrats on getting to bring that baby boy home!

Jolene said...

That is wonderful news!!!

jandkland said...

I know you're both overjoyed and overwhelmed. I'm so glad that Jonah has gotten to this point. He is such a special and amazing little boy! I can't wait to read more and more about his life as you all learn to live with his EB together. Thank you for the privilege of being part of your life, even though I'm a stranger to you. We're family in Christ, and it's been such an inspiration to go with you along this journey.

--Kelley in Georgia

Mindy said...

Wonderful News. I am praying for you. I am excited with you. I am nervous for you. I am praising God with you. SO much stuff going on. This is really great news!

Jenny said...

Praise God! Great news! Prayers for continued favor and complete healing of Jonah.

Jill said...

Wonderful news. Here is hoping for many more great days and lots of smiles when he is in his own home.

Shannon from Mn said...

Yipeee for baby Jonah... He will continue to amaze and grow! Monday will be a day to remember for a long long time!! Stay strong, Monday will be here before you know it.. All my love and hugs.
Shannon

Monica said...

YAY!! I'm so happy for you guys! God is so good!

Stephanie said...

YYYYYIIIIIIIIPPPPPPPPPPAAAAAAAA!

Toni :O) said...

Yippeee!!! So thrilled to hear that Jonah is on his way home that is the best news I've heard all day. Congrats and Enjoy and we all know God never gives you more than you can handle...you all will do great!

Anonymous said...

I, too, haven't commented before, but I have been reading since Jonah's birth. We're sending lots of prayers from Missouri! Yay Jonah! I'm sure you'll do wonderfully at home!

Lindsay said...

I knew there was a reason God told me to check your blog again! I'm so excited for you, Matt and Jonah. There is nothing like having a child in your house and I know you guys have been waiting for this day to come. May Monday come as fast as possible and may Jonah continue to be the sunshine in your life. I know his good news brighten my day today. May God continue to bless you guys and I hope the transition to home is a smooth and happy one!
Congrats again,
Lindsay Holder and family

Saylorsmom said...

WoooooHoooooo! Way to go Jonah! I am so happy for you all. I bet he will thrive at home!

Sarah Crump said...

hey sister.

i tried calling but couldn't get in touch with anyone. don't know who is there with you today.

just wanted to remind you to email me the info on sending the monitor back. i'll email you too but thought you might check this first.

see you saturday. love you.

Anonymous said...

The day everyone has been praying for is right around the corner.
I know Jonah will thrive being at home with all those that love him.
Jonah has a purpose and has shown many how great God's power is....We shall all continue to pray for your family and may God continue with his blessings!
This is the very best news! : )

Pete, Alison and Charlie said...

That's such wonderful news! I've been reading your blog since Jonah was born and I'm so thrilled for you all that you'll soon be heading home. With love to you all XXX

Anonymous said...

Oh, I am so happy for you, Matt and Jonah! This is wonderful news.

Gail
Annapolis, MD

Amanda said...

Hooray! Thanks, God!

Amanda
Oregon

Julie said...

That is the best news I've heard all day!!! I can't wait for you to have Jonah at home with you. Praying for all of you! And praying today is a good day for Jonah!

jenn lewis said...

That is FANTASTIC news!!! Hope we'll still see regular updates on how that beautiful little boy is settling into his new home! Our God is an AWESOME God!!! My family and I will continue to pray for your family as you all adjust to life with Baby J at home, right where he belongs. :)

Julie H. said...

I, too, had to come out of "lurkdom" for this exciting news! I have been silently reading, praying, cheering, but now loud and proud say WOOO HOOO!!! That is the best news yet!

Goldylocks said...

That is wonderful news! I am so very happy for you and I can not wait to hear all about Jonah's homecoming.

Michelle in Va said...

Praise God!!!! This is such great news. This will be an adjustment but it will be so worth being home and getting settled into a routine of your own. I just know sweet Jonah is gonna thrive at home. As the old saying goes.... There is no place like home. Sending you and Matt continued strength and praying continually for Jonah to heal and live a wonderful,happy, healthy life. In Christ love,
Michelle in Va
God is sooooo good!!!!

Susana said...

This is such wonderful news! I am so happy for you!! Of course will continue to pray that your conference and preparations for coming home come together for Monday. And as always continuing to pray for Jonah. Lots of love and prayers from my heart to yours, Jonah's and Matt's.

Anonymous said...

Hot Dog! Praise the Lord!!! Can't even put it into words!

Prayers for all of the details to come...God is in the details too!!!

Jane said...

What a blessing, taking your baby boy Jonah home! I look forward to seeing pictures of him in his nursery and at home. You all will continue to be in my thoughts and prayers and I pray the transition goes smoothly. I pray that God will give you strength, courage and patience to endure Jonah's bandage changing and whatever else might come up. May God Bless you

rameelin said...

Yayyayayayayayayayay!
Patrice this is great news! I'm so happy for you and thankful that you've allowed us to share this journey with you! Praise the Lord and all He has done! Good things are in store! Jonah is growing and he is so beautiful and precious! So happy for you today!

Super B's Mom said...

PRAISE GOD. I have chill bumps the size of Texas right now!

I will be praying that you have clarity and strength to coordinate all that you have ahead with the supernatural ease that only our God can provide!

You will do GREAT!!

Claire said...

Wonderful news! Oh, I'm so thrilled for you all!

Cxx

G & H said...

OMg Thats incredible! Praise the Lord for HE is so good!!!!

Linda said...

I AM SO HAPPY FOR YOU!!! This is the best news ever....

Anonymous said...

Wow!! Praise our Lord in heaven for all of our answered prayers!!!!

jcclifton said...

Monday will be a wonderful day. Praying in the mean time for peace and wisdom and pain free days. Love and prayers from North Florida.

Diana Lopez said...

praise god....its great to read this..brings happy tears to my eyes....Praying all goes well

PenelopeDawn said...

YAY!!! Still praying for y'all, and praising God for the great news!

nancy said...

PRAISE GOD! I KNEW MONDAYS WERE GOOD FOR SOMETHING! I GUESS IT TOOK OUR JONAH TO MAKE ME A BELIEVER! REALLY, ONLY 3 MORE DAYS!

Megan said...

My heart rejoices with you!! I'll be praying you have all the support you need for Jonah's care at home.

The Van Ordens said...

Congratulations! What a happy homecoming day that will be!

Lauren said...

praise God!

are photos in order? cause i could make it happen next weekend :)

so happy for you guys. i KNEW this day would come!

Anonymous said...

HOORAYYY!!!!

I know things like this can get pushed back a time or two. We have been there. But it is GREAT PROGRESS that this is even on the claendar! We are so happy for you! And Jonah is going to LOOOOOOOOOVE his room!

Janel Waters said...

I just had the worst dentist experience (is there a good dentist experience??) anyway - as soon as I got home of course I checked the blog and this just made my day!!! I am SO SO SO excited for you guys!! I know you get a little overwhelmed, but remember - you have lots of help - just ask! I know there are EB moms close to you that would be happy to help and you have Geri's number and my number and I'm sure a million other numbers. We will all be there for you guys!!

I am just so happy for you!!! I'm sure you will be suprised at how much he will thrive at home in a calm and peaceful place full of love and the Lord!

I will definately be praying for you guys over the next couple days that all goes smoothly!

Janel

Tracy said...

HOW EXCITING!!! A blessing indeed :)

Beth.. One Blessed Nana said...

Praise the Lord! I know you are so very excited.

Praying for you all,
Beth

Patti said...

Praying for a fantastic transition for you all!! Jonah, you are such a cutie pie and I can't wait for you to start making memories at HOME!!!

kidjuggler said...

Doing the happy dance with you!!! I am so excited to see this post!!

YIPEE!!!!

fulksfam said...

There is MUCH rejoicing in Searcy, Arkansas today!!! We have been praying for this for almost a month now - and just think, he'll be home and able to celebrate his month birthday!!!

Who can read this story and NOT see God at work? He is SO good :-)

Anonymous said...

OH WOW!! Great News!!!

I can't wait till Monday :)

Dana Zucha
dzucha@aol.com

Laura said...

Congratulations!!! Great news! I'll be praying that the transition from hospital to home goes as smoothly as possible.

Laura S.

Amber said...

Wooooooohooooooo! Many Prayers!

Rachael said...

Yeah!!!! I'm so excited for you! I am looking forward to seeing some pictures of Jonah in his room!!

Watts Family said...

FIRE UP!!! That is awesome. So excited for y'all!

Many Blessings,

Amanda

Anonymous said...

Praise Jesus. Rock on Jonah...you did it (with a little help from your friends). So so so happy.

embaby81 said...

That is great news!!!!! Praying for you all
Em
from Australia

Donna said...

PRAISE!!!! Yeah baby Jonah :)
Will be praying here in Calif for a smooth transition home....nothing is better than being home :)
May HIS blessings be yours!
Jer 29:11

Jennifer said...

That's grews. I'm so glad to hear that. I know you are so happy.

stiner0305 said...

i just found your blog. what a handsome and brave little guy!! i have been saying a prayer since i found you. good luck with him comming home! :)

Aimee said...

It's 8:17 pm and I am praying for Jonah right now during his bandage change. ..

Anonymous said...

Thank God!

momma said...

yes!!! so excited!!!

Erin Edwards said...

Wonderful! Please let me know what I can do to help. I still want to get you some aquaphor to get you by until Cap covers it. Would you like me to bring it by the NICU? I think it would be too heavy to ship, but I don't want to bother you. Is that the only lotion you are using right now? Do you use any eye ointment? When things settle down, I'd love to meet up. I can't tell you how excited Ethan is that there is a local little fella with special skin too:) I know you are busy, but let me know about the aquaphor beepbeepinajeep@ichthyosis.us or call. I am sooo excited for you:):):) You can do it. It will be hard for a while, but skin care gets to be a routine and you'll get to where you don't think about it too much (I didn't believe it either when someone told me that)

Erin Edwards said...

Oh, have you set up therapy yet? We LOVE OT4Kids (We work with Carol & Tracey) & April Snyder at Comp Rehab (PT). Lori Terri is our genetics counselor (we worked with Dr. Sashi & are currently in between geneticists) and we love her too. I don't know if you are set up with Amos Cottage (EI) yet, but Tiffany Van Newkirk said to call her. She is beyond awesome.

Baby Bird said...

PRAISE THE LORD!!! Can't believe its finally here...and sooner than what was originally expected!
God IS GOOD!!
Praying for wisdom and for things to go smoothly in the entire process! And please let me know what I can do once you get home:) Clean your house before his arrival...help you out when he gets home...run errands...anything!
Much love and continued prayers!
Aimee P.

Ang said...

PRAISE GOD!!!

Anonymous said...

Wonderful news!!! Congratulations!! Prayers continuing for baby Jonah and everyone involved in his care!

cathyhwilliams said...

I've prayed from Facebook for a while. My friend sent me a prayer request for you. I read your's and Stellan's blog for the first time last night. I've prayed for you both all day. You have been on my mind all day.

Nicole said...

Oh my...there are not words to express how happy I am for you! Praise you Jesus. Congratulations Williams family!!!!!!!!!!

Anonymous said...

O HAPPY DAY.
ONE DAY AT A TIME HAS GOTTEN YOU THIS FAR. THE CLOSER IT GETS TO MONDAY THE FARTHER AWAY IT SEEMS.
BE PATIENT,GO HOME GET SOME 'REAL' REST AND KNOW WE'RE PRAYING FOR YOU ALL.
2SHOES

Becky said...

PRAISE THE LORD!!!! I will continue to pray for you guys as you move into this next season.
I know the Lord will bless you with so much strength and encouragement.

Anonymous said...

Let's just praise the Lord! Wonderful. Praying for your strength, direction and peace for this transition.

We love ya in Missouri. - Leslie

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

Yes - another hurdle cleared! Thank you, God!

Such wonderful news - I just know you guys are over the moon!

Grannie in Florida

Rachelle said...

Can't wait to hear about that sweet boy sleeping in his own bed, with Mom and Dad under the same roof! Hang in there! Praising God with you and continuing in prayer!

Leedra said...

Great! I am new here, just found you yesterday. I have read so much of your post, I am so excited for you.

Tara said...

That is so exciting. A Homecoming for Jonah. Praying you have a wonderful, weekend with all the home preparations.

Monkey's Momma said...

Awesome! Thank God for answered prayer!

Jenn M said...

That is wonderful news! Very excited for you!

Candace said...

HOW EXCITING!! i know you guys are super excited to have your baby angel home :) our family (along with my 2 year old daughter who asks about jonah on a daily basis and wants to see any new pics you have posted)prays for yours everyday and will definitely continue to do so as you bring this precious child home. we are soooooooooo happy for you guys!!!

Tiffany said...

WOO HOO!!! What fabulous news!! I am so excited for all of you! I can't wait for little Jonah and all of you to be home! I will continue to pray for his little hands and feet, for no infection, and for a great weekend preparing for your move HOME sweet HOME!! Love to you all! Tiffany

Channe said...

Congratulations!!! It will be good for all of you to be home together.

DJones said...

What great news! Music to our "ears!"

Amy Walter said...

YAY!! I have been praying for good news on a definitive coming home date... God is good! I am so excited for you all!! If you need ANY help, please call on me... I am more than happy to do anything for you guys!

brightleigh said...

Congratulations! Praising the Lord and continuing to lift you guys up. You all are so very blessed. I will continue to pray for Jonah's hands and feet, his ultimate healing, and for yours and Matt's strength. It will still be a tough road, but you are strong and you will make it. I will also pray for the transition home. I know you are counting the hours. Thank you GOD!

Much love and prayer,
Leigh

Penny said...

Praise God! I am so hapy to hear tht Jonah is going to be going home!!! Things will get to be so much more real..... how exciting for you all to be in one place.

Continued prayers for your little miracle.....

Monday will be such a wonderful day!

two red heads and two brunettes said...

Yeah!!!!

Anonymous said...

what wonderful news! Im praying that all goes well

Sandy Moore said...

Sweet! I'll keep praying for all three of you!!!! I hope you can find time to continue giving us updates. I tell you, you seem like family.

Tabatha said...

This is amazing! God is Good!

DebRA's Mary said...

We are so thrilled for you. Please know we are here to help and support.
212 868-1573. Email staff@debra.org
Tell us if you need anything.

Mary

Anonymous said...

Oh happy day. Lots of deep breaths and remember, take care of you and don't hesitate to ask for help.

I know you will be busy with Jonah, but updates and pictures would be great great great. Love seeing that sweet little boy.

Kimberly
WI

Laura said...

So HAPPY to hear about your homecoming. You'll continue to be in our family's prayers.

SW WI MOMMY

jenny said...

delurking for the first time to say, YAY! so happy for y'all.

Alex(andra) said...

Yay!! That is awesome... God is good! Rock on... many prayers still being sent up!

Nicole said...

Wow! That is incredibly awesome news! God has been there for you guys. I am so excited for you!!! As I looked at your icon on my blog tonight I felt lead to come here, and this is what I saw!!! God is so good. I posted a song from youtube on my blog called, "You were there". I think that it may bless you tonight, especially since this recent good news. I know God was always there with you. He is so good! I thank Him for giving you strength to get through this. Thank you Jesus. To you and only you be praised!!!

Loving Him and your family in Christ,
Nicole

Ki said...

Yea Jonah!

amber said...

PRAISE GOD! So happy for you!

LoveLladro said...

that is fantastic news! congrats guys!

Melissa said...

Whoo-hoo!!!! I am so happy for you guys!!! Better get some sleep now - your house is about to be invaded for the next 18 years by someone that will keep you up at night, make messes, and eat everything in sight (eventually, anyway). Isn't it great??? LOL - can't wait to see the pics from home!

Frugalista Mama said...

Wonderful news!!!!! That's so awesome :)

Amy B said...

That is SO WONDERFUL!! I never could've imagined it would be 1 month and he'd get the opportunity to go home! Praise the Lord. Please know we'll be continuing the prayers and even more so that things at home will go smoothly. Will continue to trust God for a complete & miraculous healing!
Blessings,
Amy in WA

Cathy, Kris and Rose said...

I am overjoyed at this news! I will continue my prayers for a safe journey home!

Astrid said...

Praise the Lord!!! I am so excited for you it made me cry when I read Jonah is coming home. I'll keep praying!

Stephanie said...

The news couldn't get any better than that right now!!! Yay!!! Excellent..I'm keepng you all in my prayers!