Friday, March 6, 2009

jonah - friday, march 6th

Hi friends!
Before talking about Jonah, I just want to give today's shout-out to SHAINA! She turns 14 years old today! She said she's holding her second time to see Jonah (she only gets to go in twice a week for 10 minutes) until this afternoon when she gets out of school. She wanted to be able to see him on her birthday. They can celebrate BOTH their birthdays together! Jonah is one week old today (as if you didn't know).

Today has been a good report day for the most part. Jonah is eating 15 cc's regularly by bottle now about every 3 hours depending on how drugged he is at the time. He's so eager for it and sucking it down like a champ. I really think he'd eat more if they let him, but it's better to take it slow, and gradually increase the amount. My goal for him (and this is in my head not from their lips) is that he have it out within the next week. I'm so proud of him. I've missed a couple feedings due to the timing of his dressing changes, shift changes etc, but I'm hoping to be able to do the rest of them myself from now til the time we go home. It's really the only bonding time I get with him, so I'd really like to do it myself when I can. I can't wait til Matt can do it too, but with his broken wrist, it would be pretty difficult for him... plus, his cast is not exactly sterile.

He just finished his dressing change about an hour ago. Dr. Furlong said he was in a pretty good amount of pain. It makes me so sad to know that he's hurting, and that there's nothing I can do to comfort him. The whole process takes them 2 or 2 1/2 hours. They are constantly tweaking his amount of morphine and when to give it to him for it to be most effective. We'll need to start going back there and watching them do it probably this weekend or next week, but there's a video on the Stanford website they want me to watch first to prepare myself. I think the doctors and nurses even have a hard time seeing him that way, and they've seen some pretty bad stuff. It will be rough. I am not looking forward to it.

He is gaining weight and eating more. Those are both GREAT things. We're trying to focus on the positives. They haven't checked his WBC count in a while but will order a CBC tomorrow, so hopefully we'll find out where he stands as far as an infection. He did have a blood culture done. So far, it is negative, but I think they watch it over several days. Please, God, no infection.

A couple logistical things:

We now have a PO Box for those of you who have been asking for a mailing address:

Matt Williams
PO Box 11455
Winston-Salem, NC 27116

We have to use Matt's name for all mail, because Jonah was unable to produce 2 valid forms of identification or a signature. That is next week's goal.

Also, they are planning on running Jonah's story on the FRONT page of the Winston-Salem Journal tomorrow. Front page, people, and I didn't even get the chance to fat-face approve the photos. This could be bad. The website is journalnow.com. They said it would run tomorrow unless it snows. It is currently 70 degrees here. I think we're good.

The newest task: burping Jonah.
I would love to get some advice from you EB peeps out there on the best process for this.
Thanks so much for continuing to love on, care about, and pray for Jonah. God continues to answer our prayers.

Luke 18:1-5
One day Jesus told his disciples a story to show that they should always pray and never give up. “There was a judge in a certain city,” he said, “who neither feared God nor cared about people. A widow of that city came to him repeatedly, saying, ‘Give me justice in this dispute with my enemy.’ The judge ignored her for a while, but finally he said to himself, ‘I don’t fear God or care about people, but this woman is driving me crazy. I’m going to see that she gets justice, because she is wearing me out with her constant requests!’”
I'm not afraid to drive God crazy with my constant requests. How about you?

Decorating Jonah's bed with pictures of us and Deac. (We taped them to the top).

62 comments:

Katie said...

Oooh, do I get to be the first comment? How exciting. As far as the burping thing, we burped Ella the same way you would another baby, over my shoulder. The key for her was that you can't pick them up under their arms to put them on your shoulder, so I would put one hand on her bottom and one hand supporting her neck/head and gently lay her on my shoulder (and make sure I had a very soft burp cloth for her) then I would pat her back. We always had some sort of wrapping around her torso which would serve as protection too. Other EB parents may have other ideas but this worked for us and we didn't have any skin problems because of it.

Katie
mom to Ella, 20 months with RDEB
teamjoella.blogspot.com

Amber said...

I hope you don't mind I linked your blog to my blog. My sister Rachael's baby Gracie Anne (she was very sick in utero) was stillborn in April of last year. Rachael and her husband waited a few months and decided to try again. This time they got pregnant with a healthy baby boy. But Rachael inexplicably had cervical incompetence and pre-term labor. She delivered her little boy at 24 weeks 6 days on Feb. 11th. He is currently fighting for his life in the NICU. That is what my blog is about. Jimmie's journey. http://rachaelsupdateblog.blogspot.com/


I stumbled across your blog and was so touched by your story. I am praying for your family and your sweet son Jonah. I am expecting miracles for him. I feel your pain in twice not having the birth experience with your child that you hoped, prayed and dreamed for.

Many prayers!!!

Love,
Amber

singing mama said...

Still praying lots for your little man. Happy one week old birthday Jonah!!!

Luv singingmama

Rebekah - A Wife and Mom said...

OMG! I just found your site through Kelly's and I had to say Your little Jonah is the cutest thing I have ever seen ... those cheeks and perfect lips are beautiful ... I read your entire blog this afternoon and my heart breaks for you and your family ... I will continue praying for Jonah to come home to his mommy and daddy where he belongs ... God Bless you and your miracle baby!

Rebekah

Baby Bird said...

Sorry, I don't have any suggestions about burping but I can't get over how sweet baby Jonah continues to look better and better with each photo!
I know that Jesus holds your sweet baby in his loving hands when he endures pain...asking Him for an extra dose of His pain relief!
Take care and I got another book for Jonah's pics...it says "Little Champ" on the front and has a sports theme...for Matt;~)
Love you all!
Aimee

Desha said...

I love how chubby he is getting! I can't imagine how hard it must be as his mama not to kiss those sweet cheeks. Praying that it will be SOON!

Amy said...

Wow! Tricey, he looks so good. I can't wait to see the little guy. I bet he's changed leaps and bounds (at least it looks that way from the photos)since Monday. Much love! Aunt Amy (I LOVE saying that)

Sara said...

When Sami was a baby we carried her around on a pillow. It was easier to pick her up and holder without having to move her too much. Plus it was soft to lay on! We also fed her on the pillow and for burping time we'd sit the pillow up, gently bend her forward a little and rub in circle motions on her back, as opposed to patting her back. Her back was one of her worst areas so we have to be extra careful. Every baby is different and you'll find what works best for Jonah.

Jill said...

Happy Birthday Jonah and Shaina!

Thanks for doing this blog. I've told you - I am constantly checking.

That is awesome about the front page!

I love how your sense of humor comes through in your writing. I laugh. I cry. I pray.

Love you

Sunny Mom said...

Is he laying on an eggcrate currently? If he does then you can pick up the eggcrate and holding him on that. It is so easy and as far as burping. I sit him up and burp him under the eggcrate. The eggcrates are good because it helps with pressure. All our really sick babies go on that instead of the sheepskin. Also, with the eggcrate you can bouce/wiggle them without moving them around and causing friction. Hope this helps. Also, we started our EB baby on methodone. It is a pain medication that lasts longer than morphine. You only have to give it every 8 hours compared to morphine atleast every 4 hours. The only problem is if they start methodone then he will be on it for life probably. It is hard to wean them off of it, however, he will most likely need pain medication the rest of his life. However the Almighty Physician may cure that problem! But the methodone is working wonderfully for the EB baby in our unit. He is looking wonderful! I showed our EB baby's mother your website the other night.

Greta said...

I also found your blog through Kelly's and am enjoying following Jonah's story.

It may not seem like it to you but he looks and sounds like he is improving day by day! He is TOOO cute!

Hang in there and continue to lean on Him. You seem like you're a wonderful mom :).

The Buchanan Family said...

He looks so much better today, his skin color and all! Keep it up Jonah! Praying for your family!

nancy said...

Patrice! OMG Jonah looks so good today! I think these are by far the best pics yet! Love the angle you used so we could see his face better, his beautiful lips and cheeks! I am overjoyed just looking at him and hearing the good news for today about him eating more! I agree with another response, i don't know how you keep from kissing those cheeks and lips! This too will come in time and like you said, get out of my way when that time comes! I can't wait to read the article online tomorrow! My neice lives in Winston and she is waiting to read it also!
Prayers are working for Jonah!
Praise God!
Get matt to take a pic of you so I can see your beautiful face:)
Nancy Lee:)

Anonymous said...

Trice, these pictures look great! I hate that I haven't gotten over there yet today, and I didn't get to see him yesterday...I miss Jonah! I'm so glad he can look up and see you now whenever he wants! I left you a voicemail, but thought you might actually get this message :-) I'll come by when I get off at 6. I love you!!! --kat (I can't remember my blogger info)

Sarah said...

I am praying for you and your husband and your little Jonah. It is amazing to see your faith carrying you through such a difficult time. Thank you for sharing your story.
Sarah

Jessica K. said...

I just watched the videos on the stanford website. I am going to post the link here for ppl who might want to see what parts of Jonahs day looks like.
http://dermatology.stanford.edu/gsdc/eb_clinic/eb-videos.html

I am keeping Jonah in my prayers. I am so happy to hear that he is eating better. I pray that he continues eating as good so that the tube will be out soon. I pray that he has no infections, that he is able to get stronger and stronger as each minute passes.
I pray for you guys. You seem to be such strong people, may God be right by your side while you are going through this hard time.

I am so glad Jonah is looking so well. He sure is the most handsome little boy!! I love that he has open eye time with you guys and for the cute pictures of him!!

Hugs and Love from Germany.
Jessi

Elizabeth said...

I have come across your blog along a chain of friend-friend-friend prayer requests for Jonah. I was instantly touched by your story! Our family has ties to Winston-Salem and Greenville. We have prayers going for you here there and everywhere! This story is especially touching for me as my dad is a survivor of a rare genetic skin disorder (acrodermatitis enteropathica). Prior to the 50's (when he was born), it was considered non-survivable. A treatment was eventually discovered and he now leads a normal life...so hold on to hope...miracles can happen! Jonah is absolutely adorable. I just want to eat him up! We are praying for his healing and his own miraculous cure!

Courtney said...

I just wanted to tell you that you have the most beautiful baby boy! I love that round face. When I found your blog through 4 little men a few days ago my heart went out to you guys. It makes me sad that any child would have to endure that kind of pain but I'm sure he will grow up to be a super strong little guy. I will definatly be praying for your sweet family.

Simba9960 said...

HE LOOKS AMAZING!!!! Okay so for burping...pretty easy.

Just sit him up - I know but don't be scared - gentle hand slipped behind the neck/head area, give enough slack to all the wires/lines etc...around him, place a gentle hand on his front and pat pat pat in the back & *burp*...Is his back okay? That is what we did with Bianca. Get comfy w/holding him he'll be just fine. If you find this too much at first just gently roll him over one side, pat his back and he should be okay.
After you are able to carry him more and more it becomes easier to do...I use to love hearing those burps!! Awwww!!!

Stephanie said...

I could just stare at his pictures all day. What a BEAUTIFUL baby.
My heart cannot handle the fact that he is in pain so I can't even imagine what you are going through.
We will NOT GIVE UP IN PRAYER for sweet Jonah.
Lots of love from TN

Amber said...

He looks so good today... I'm amazed to see his transform from day to day. I've been praying for you and precious baby Jonah. :)

bunchofbull-ers! said...

Ohhhh, HE IS SO CUTE! Praise the Lord for good feedings! I pray continued healing for his body. What a sweet boy.
Stay strong in the Lord.

'God is our refuge and strength,
always ready to help in times of trouble.' Psalm 46:1

The Burgess Family said...

Glad he is gaining weight and that he is eating like a champ for you guys!!! Small steps are the ones that lead to jumps!!!leaps and bounds!

Sheryl From Colorado said...

Your little Jonah is just precious...he looks so big! We (our family of 6)pray for him here in Colorado and thank you for your powerful testamony. We pray for comfort and peace.

the*4*of*us said...

He looks so good in these pictures! Such a cutie pie!

Mindy said...

We are still praying for you. I love that you guys got to put pictures up for him. That is great!! You threw me with the CBC things. I can't think of anything that can stand for except Carolina Bible Camp!! :-)

We are thinking of you constantly.

Anonymous said...

Dear Willimas family,
It feels so strange to address you as strangers. I heard about your blog from a friend who asked us to pray for you. I have spent the entire day reading your journey, from being pregnant with Gabe to todays post. I cried along with you, and prayed along with you as well.
I just wanted you to know that there are many people here who heard your story and are praying for you.
I would love to be able to help. I will keep checking back as Jonah grows to see if there is anything I can do that might make life a little easier. And of course, your are now and will constantly be in my prayers!

lrm said...

He's so beautiful!!! :-)

Erin said...

He is looking great!
love and
blessings from ga~erin

RLR said...

Love the new photos - he has changed so much in just one week! Sorry to hear that he's in pain. That's really weighing on my heart. Still thinking of your family often and praying for you (the button is up on my blog).

Hilary Farris said...

Still praying for you guys!! Jonah is absolutely beautiful, or would handsome be better- either way he is precious!! And oh, can I say- almost 100,000 hits to your blog- wow!

Anonymous said...

Wow, Jonah looks sooo good. That is wonderful news that he is getting so much nourishment by bottle...he seems to be increasing his intake everyday. He is that much closer to getting his feeding tube removed! Jonah looks beautiful.

Gail
Annapolis, MD

applesofgold said...

He is looking so great! Praise the Lord! We are happy to continue praying for your beautiful boy.

cara said...

You have the cutest little boy! Thanks for sharing pics of him! I told my kids about Jonah (I came from Kelly's blog; LOVE the power of prayer!) and my 4 year old reminds us to pray for him every night. So we do :)

As for burping, one way we tell new parents to burp their babies is to sit the baby up and bounce him up and down a few times, then tap his back or rub it, if need be. Often, the burp comes up without the baby needing to be patted. This is from the book "The hAPPIEST bABY on the bLOCK" by Dr. Harvey Karp. I HAVE NO IDEA IF THIS WOULD BE RECOMMENDED WITH EB BABIES, but you know if you're able to move him like that. It sounds like it wouldn't work right now, but maybe later on?? The idea behind this is that the bubbles in the baby's belly rise like in a can of soda when it's tapped, and that makes the burp come up if there is one. Hope that makes sense, and I hope you find something that works soon!

Patti said...

I prayed for Jonah last night as I made dinner, he just came to mind. He has such a sweet face, the Lord has plans for this little boy!!

Stephanie said...

Just gettin' my Jonah fix!!!!
The glory of God is written all over your face. You make me feel so close to God and I think it is because God is so near to you.
HEAVEN IS NEAR, JONAH!! Jesus is coming for us to free us from this place of suffering. I hope my mansion is near yours and your sweet momma's!!! Your gonna have a big one because of all the people you are leading closer to Christ!
You have a high calling and I am so thankful for you!
Pleading in the throne room for your healing-



This verse makes me think of your mom---
"Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls,
yet I will rejoice in the Lord, I will be joyful in God my Savior."
Habakkuk 3:17,18

Praying these verses over Jonah--
"I cry out to God Most High, to God who WILL fulfill his purpose for me."
Psalm 57:2

"The LORD nurses them when they are sick and eases their pain and discomfort."
Psalm 41:3

"If your law had not been my delight, I would have perished in my affliction."

Psalm 119:92
"I will be your God throughout your lifetime--until your hair is white with age. I made you, and I will care for you. I will carry you along and save you. "
Isaiah 46:4

"Heal me, O Lord, and I will be healed; save me and I will be saved, for you are the one I praise."
Jeremiah 17:14

"The Lord gives strength to his people; the Lord blesses his people with peace."
Psalm 29:11

"O LORD my God, I cried out to you for help, and you restored my health."
Psalm 30:2

"As for me, I am poor and needy, but the Lord is thinking about me right now. You are my helper and my savior. Do not delay, O my God."
Psalm 40:17

"Then your light shall break forth like the morning, Your healing shall spring forth speedily, And your righteousness shall go before you; The glory of the LORD shall be your rear guard."
Isaiah 58:8

"My comfort in my suffering is this: Your promise preserves my life."
Psalm 119: 50

"Because you are my help, I sing in the shadow of your wings."
Psalm 63:7

Anonymous said...

To burp Weston, we just sat him up and leaned him forward a little. Put one hand gently against his chest and sort of under his chin and like some people said sometimes he just burped, then sometimes gently pat his back.

To hold him, his grandma made what we call "mats" with cute material and quilting stuff inside. They must have been well made since now that he's 14, he still covers a little with them for warmth when we change his bandages. If you would like, she could make some for you so that when you bring Jonah home you can use them. We would just put him on a mat and then it made it easier to pick up under his back and bottom. It was soft, so you could still feel him and he could still feel you. He sat on one in a stroller, baby swing, toddler swing, etc. so when you got him out, it was easier to get your hands under him, etc. When he first went to pre-k, he used one to put on his chair to make it soft. So...if you think this is something you'd want to try, let me know and I'll have her right on it :)
Dana Zucha
dzucha@aol.com

Melissa said...

Jonah looks better today...and I'm so glad to hear about his feeding! I had sent a link to all my friends and family and asked them to say prayers for Jonah and for all of you. My aunt sent me a reply that she's keeping you guys in her thoughts and prayers and that she had a story I could share with ya'll that might help a little. Her friend has twin grandsons...when they were a year old one of the boys was diagnosed with a brain tumor and they were told that he was going to die, that the only thing they could do was put in a shunt to remove the pressure and make him more comfortable in his last days. At the same hospital, at the same time, there was a little girl who was in ICU and not expected to live. The nurse was watching her monitor and saw a 'shadow' in the room, but there was no one there. At that point the little girl did a complete turn-around and started getting better. The only explanation was that it had to be an angel in the room. Okay, back to her friend's grandson...he was in the same hospital, in the OR, at the time. The doctor started to operate to put in the shunt, and the tumor just sort of 'floated' up in the way. The doctor cut part of it off to get it out of the way...and it floated up again. By the time he was done, he'd removed 90% of the tumor. Test results came back that the tumor was benign. All of this happened just before Christmas...the baby is now catching back up to his twin in learning and growth! He went from only having a few days to live to now they feel he will probably lead a normal life. So...there's a couple of stories, other than just my son's, to also prove the theory that prayer most definitely works! You guys are all in my prayers, and will stay in them...hang in there, and tell little Jonah that he has tons of people pulling for him, and that we can't wait until the day we might get to meet him in person...

amber said...

I'm so glad he's eating better! What a blessing! I'll be praying for the video you have to watch and for when you actually see Jonah getting his bandages changed--I'll pray for such grace for you during that time.

Joy Hales said...

Hi, I haven't met you guys...yet. My name is Joy and I work part time in the NICU; but I'm on vacation this week. My sister and a friend have sent me links to your blog! My daughter was in Brenner's for 3 1/2 months when she was born...nine years ago. She has a rare chromosome deletion, 10q25.2 deletion. My experiences with her led me to the job I am doing now, Family Support Coordinator. I hope I can meet you guys next week! I'm praying for Jonah! Hang in there and try to get any rest you can and eat the best you can to keep your energy up :)

Victoria said...

Your Jonah is such a beautiful boy! Please know that there are people here in Massachusetts thinking of you, and praying specifically for sweet Jonah!

Thank you for your faithful example! You are such an encouragement!

Beth said...

I too am amazed to see the change from day to day! He is SO sweet!

That must make you feel so wonderful that he is starting to eat on his own! And how wonderful that you will be able to do most if not all of the feedings!! What a Blessing!!

We continue to say prayers daily!

Anonymous said...

He is more beautiful than ever! I love that he will constantly be looking at pictures of you. You are his very favorite person!!
I also love that you are going to try and do all his feedings. That will take a lot of dedication and I will be praying for you as you do whatever it takes to love on your sweet, sweet baby boy.
Thanks for posting. Your baby is changing the way so many of us look at each day.
In Him,
Daisy (Alabama)

Andrew Boyd said...

Hi Patrice. Andrew Boyd writing from Burlington. Just wanted to let you know that little Jonah just helped 60 high school kids hear the Gospel last night. Here's what I mean.
We had Williams HS YL club last night, and it was a pretty rowdy group. I was talking about baby things and being a dad, and guys were still pretty talkative. I then put up a picture of Jonah and began to share about him. Immediately, the room fell quite. As I told them about you and Matt, and a little about EB they were silent. That led into discussing the story in Luke 17 of Jesus healing the 10 lepers.
From the moment we talked about Jonah, the kids were all ears. It was great, and some kids who desperately need to hear about their savior, did so in no small part because of your boy. You also have 60 new prayer partners.
Your family is an inspiration. We are continuing to pray for you.
Andrew and the Alamance County YL community

Stephanie said...

Praying that Jonah will continue to feed well and that you will get to feed him during those times. Hope you get the answers you need for the many questions you have. Continuing to keep you in my prayers!

SS said...

i'm amazed by his continued progress. what a sweet boy!

Brandi said...

Thank God for huge miracles in such a precious child! It is amazing how much he has started eating! And the newest pics of him look like he is healing up a bit. He looks better. We are still praying for no infections!

Anonymous said...

Keeping fighting Jonah your in my daily prayers. ~Darlene

Janet said...

What wonderful news in today's entry. I can't believe he is already eating this much from a bottle. I think your wish for a week is a very realistic one. It sounds like he is doing great with it. His pictures look better and better each day. Praise God. Praying for you each and every day for no infections, eating more and more, pain management, good counts, and plenty of love and support. God Bless.

Prayerfully,
COLE'S Prayer Team
Janet Inman--Indianapolis, IN

LoveLladro said...

2 valid forms of id or a signature... next week's goal = cracked me up! Good for you for not only looking and believing in God through this but having a sense of humor. I am sure it's not always like that but your really leaps and bounds ahead of anyone else in your situation. We are still praying for you guys and for little Jonah!

Antheum photography said...

Jonah is looking great, what a sweet baby. You will soon become a master at we affectionatley termed the "the scoop". We still use the scoop and before Zack was 2 he could say "you can't pick me up by my armpits, you have to scoop my bum." And as the other eb mom's have said you just gently roll one hand under the back and one under the bum. It really is a whole different way of touching that you will learn. We learned that you use palms instead of finger tips so that the presure is distributed a little more. It is still so normal for me to cringe when I see anyone pick up any child by the armpits. Things will all come with time. Zack loved to be held, and I think I held him non stop from the moment he came to our home at 14 days old until he turned 6 months old. A very wise eb mom told me something when we first got Zack that has always stuck in my mind, and it has been very true for us. She said "he is just a happy healthy blistering child" and while we have had some very hard and scary times, it helps to remember that he is boy with fragile skin, not skin with a fragile boy inside.
Lots of love,
KaDee, mom to 6 year old Zack, rdeb.

Anne Conover said...

Patrice, I just have to say something about Jonah's new pictures you posted today. He really favors you in these! I saw it instantly. Wow, what a cutie and he looks so good!

Anonymous said...

Y'all don't know me, but Patrice, you know my mom and sister. I just want y'all to know that I am praying for Jonah and for you and your family. I have passed along your facebook page to my small group from church. Every day, when I look at your blog, I am amazed and convicted about the power of God in our lives. Jonah looks better every day, and he is so handsome! Thank you so much for putting your story out there for others to see the power of our Lord.

Jenny said...

GO JONAH!!!!! TOUGH BOY That is wonderful news that he is eating so well from the bottle!!! YAY He is a trooper, the burping was hard for us as well, but like katie said we basically burped Jamie over our shoulder with light taps. Jonah looks wonderful, God bless you and your family patrice! Jennifer

Susan said...

Keep it up little guy! You have an awesome Mommy and Daddy!

Amy said...

My goodness, he's getting huge! Happy 1 week birthday Jonah, and happy birthday Shaina!

<3
Amy Todd

LeeAnn said...

I was so excited to read the latest post of good news. And I know Shaina was thrilled to be able to see Jonah on her birthday too!

Amazing how just a week ago we were chatting about how to read the heart monitors when you were having contractions. Although the story that is unfolding is not anything like you could have imagined, it is so obvious how powerfully God is working through your situation.

Chuck and I just read the WSJ article. It's already posted online: http://www2.journalnow.com/content/2009/mar/07/all-pulling-for-jonah-messages-pour-in-from-around/.

In addition to the facebook prayer group and the blog, the newspaper article is going to reach so many more people - people who don't even know what facebook and blogs are!! In addition to praying for you, Matt, and little Jonah, we're also praying for all the people who will read the article tomorrow, that they will see Jesus in you and want to know more about how you have the hope that you have.

Much love,

LeeAnn & Chuck

Rick said...

Aw, he's looking really good! What a sweetheart! And what a strong little guy to be eating so much now!

Melissa :)
www.withasmile.wordpress.com

leslie ruth said...

Patrice, Matt & Jonah,

I first heard the news through MckMama and then was suprised to find that this "random prayer request" was more connected to folks I love than I would have thought. First, I grew up in W-S too and then I saw that Patrice works for Young Life. Lynn Barclay (and that wacky husband of hers) have been a second set of parents to me. Small world, huh?

I'm praying daily for y'all and so grateful that you have the blog to keep us all up to date AND so that you have an outlet of sorts.

Many blessings...
Leslie

P.S. The W-S Journal article is up online!
http://www2.journalnow.com/content/2009/mar/07/all-pulling-for-jonah-messages-pour-in-from-around/news-regional/

Misty Rice-Baniewicz said...

He is so pretty....

Hang in there mommy... he feels your love. I feel that paranoia and anxiety for you. I will pray that God softens it for you and gives you peace.....

Sounds like little man is a strong fighter and I love the one picture with his eyes opened. Love it.

God bless....

Sonja said...

I also have to comment on how good he looks now! It's unbelievable! He is doing such a good job at getting better- way to go. Will continue to pray for you all though!

tammy bolen said...

Hello, my name is Tammy, and I honestly believe you are right where you need to be. Baptist hospital is a wonderful wonderful hospital and the nurses...they are so passionate and caring. I was at Baptist in 2000 with my husband which got sick with a bacterial infection (a type of meningitis). I know this is a totally different situation but due to this infection, he lost both legs, 1 hand and all fingers, but 2 and I tell ya, I thought I couldn't deal anymore. The people in the waiting rooms were so kind, caring and compassionate. We started a group of prayer right in the waiting room and had everyone join hands and said a prayer every night for 3 months. It didn't matter if they believed or not, we said prayers for all. I said a prayer for you today. I am so sorry to hear of this but know baby...we all are confident and praying and we know the Lord will do what is best. I ask that the Lord take this sweet precious baby into his hands and keep him safe and help guide him though this...I ask this not only for Jonah, but also for you & your husband.I know this is a very difficult time for you but be strong and keep your heads up! God is in control and Jonah is still here with us and thats a "Blessing" in itself. I had to continue to tell myself that over and over again, but ya know what? The doctors said my husband wouldn't make it, he wouldn't make it, but once I placed Cory in Gods hands, I left him there and I let God decide if it was his time to go. Well, he is still here with me, and I couldn't thank Baptist enough for all they did! I know that it was God who guided these nurses into having the knowledge to help my husband get better. He might have lost limbs but at least I still have him. Hang in there you two...I have faith and I just want to let you know "WE ARE ALL CHEERING FOR YOUR LIL' MAN"...he is so darlin'. In my thoughts & prayers and God Bless!