Thursday, October 29, 2009

yet another miracle

Wow! What a day! When the nurse took Jonah's weight, and we saw what it was, I just started crying. Jonah was looking at me like I was a crazy person. Isn't it funny how we, as parents, tend to FREAK OUT (with reason... most of the time anyway), but all the while our kids are like, "It's cool. Whatever." So nonchalant. He never even acknowledged the fact that he was pushing me (not really him but the circumstances) to the edge of a mental breakdown. Sweet, oblivious, 18 lb 3 oz child. How I love thee!

And just to clear things up for those of you who have just begun reading or don't know much about EB - You may think I'm crazy for talking g-tube for a (previously) 17 lb 11 oz eight-month-old. And if he were a "normal" baby, we would be. But the problem is not how much he weighs. The problem is with his growth curve. Any time he starts falling off his growth curve (and a month without gaining any weight was doing that), we have issues. There's a lot to consider with EB, but nutrition is #2 (I consider #1 to be infection). Like I said in an earlier post, once EB kids get behind, it's a real struggle getting them caught up. They need MANY more calories than "healthy" kids, and their bodies require lots of EXTRA to heal the blisters they do have and to regenerate new skin. Healing takes a lot out of you.

So... I hope that explains the urgency of the last couple weeks. And there is still a great chance that we are not out of the woods. I don't think this is the last time we'll be dealing with this (although God can do anything, so we wait in hopeful expectation), as there is so much to consider. G-tubes are good for so many reasons for EB kids - adequate nutrition, a happy alternative to shoving lots of meds and vitamins down your kid's throat, and one I've thought about a lot: a way to nourish them if they fall down and hit their lips or mouth. Can you imagine? Big blisters, days of healing, and the inability to eat. I can see why many EB parents get them. Actually, the idea of the g-tube itself sounds pretty good... it's just the hospital stay, the surgery, and mostly the intubation that scare the you know what out of me.

But anyway, for today I am SO happy, SO grateful, SO completely amazed at what God has done over this last week. EIGHT OUNCES!!! Wow! The most he's ever gained in a week is six ounces. And I just love you guys to pieces. Ninety-eight comments on a post about my kid gaining eight ounces! I can't say enough about what a great support you are to us, and to me especially. Knowing that Jonah is being prayed for all over the country and the world gives us so much hope and strength. We feel so blessed that God has given us the gift of YOU! Again and again I ask for you to pray VERY specifically, and again and again, God says, "Okay. Since SO MANY of you asked, I'll do it." You can just back and read my daily prayer requests from the NICU and see directly how God answered each and every prayer. Isn't that amazing? So many times God answers prayers or works in our life, and either we're too busy and miss it, we chalk it up to coincidence, or we realize it but then forget about it a week later. I am so BLESSED to have this blog. Not only do I have a record of Jonah's life and medical journey, but most importantly, I have a written record of God's miracles in his life... in our lives. That's just so neat to me. Sorry, I know I'm rambling. I'm just so excited for the day when Jonah can read (and truly understand) where he was, how far he's come, and the many, many things God has done for him.

And maybe by that time, he'll be completely healed.

Faith as a mustard seed...

It's coming, friends. Just you wait and see.

(My friend, Katie (Quinn's Mom), took this photo of Jonah and me on the hayride at The Pumpkin Patch. I just had to share it. She did such a good job. Look at that sweet face!)

92 comments:

DonnainNC said...

There is nothing like being able to look back at where you've been to make you appreciate how far you have come, especially if it's ALL GOD!

Anonymous said...

I love his hands in this picture!

Rejoicing with you in South Carolina

Amy Reber said...

Patrice, I believe the picture of you and Jonah on the hayride is THE MOST beautiful picture EVER! I hope that you blow that up to a huge portrait and proudly hang it for all to see....you holding your 18 lb. 3 oz. MIRACLE!! Praise God! We're still praying in Eatonton, GA! Much Love, Amy Reber

Sewconsult said...

Such joy in your words & then to see them in the joy picture...wonderful sight.

Mountain Girl said...

Jonah's weight gain is FANTASTIC news! I hope he continues to gain.

EMitchell said...

I have followed your blog for quite some time now. I typically read blogs while nursing my own babe and therefore have no hands to type! But I just love praying for Jonah. He is just the cutest, sweetest thing! And I love your writing, you are funny and make me laugh, but also such a wonderful and loving mama bear to your sweet boy. I have truly been touched by your family. I will continue to follow and pray for you all! Congrats on darling Jonah's weight gain - awesome news! And the picture is beautiful, a treasure!

Jessica said...

What a beautiful picture!

Cindi said...

Oh, Patrice....I love that picture. It is beautiful! So happy that sweet Jonah is doing better!

Stacy aka Fahiima said...

Its amazing to see how God is using Jonah so much and he's too young to even be aware of it. 8 oz. way to go God!

Mel said...

Oh Patrice, that picture brought tears to my eyes. What a precious miracle you have. God is good!

Mel

Robyn said...

gorgeous picture! look how peaceful, happy and sweet jonah looks!!! you too! praise God for his weight gain, i am so happy for you! you are a GREAT mommy, and i admire you!

KK said...

Love this pic! I'm so glad he gained weight.

Erica said...

PRAISE GOD!!!! And I LOOOOOOVE that picture! Priceless!

Cristi said...

Great pic. Looks like he is thanking God in prayer with you. You two are doing an awesome job with him. Keep up the good work and God Bless.

Anonymous said...

that is awesome!!! God is good...ALWAYS!! Jonah is a miracle to all of us!!

brittany mills said...

What a miracle!!!!! I did a little dance when Sarah told me :)

Penny said...

Yes, people are praying and God is delivering Jonah--- one ounce at a time. Don't you just get chills? The picture at the bottom is gorgeous of BOTH of you, but I especially adore the look of joy on his little face. =)

M J said...

YEAH!!! God is so good! :)

EdwinsonFamily said...

I haven't commented in a while... but always read your posts for updates on precious Jonah.
Praise Jesus for those 8 oz! What a miracle!
P.S. That picture of you both is BEAUTIFUL! Promise you'll blow it up and frame it! Love!
Praying for your family, Joy in Kansas.

Rebekah said...

Perfect picture for sure!!!!!!!!

Crysgoss said...

God is Awesome! Love the photo, Jonah is such a sweet handsome warrior:) I may not know him personally, but he has touched my heart!

Laura A said...

I love this picture, Patrice - it really captures how much you love Jonah (and how much he loves you!)

I'm sad to admit that there are days that I take for granted that Jonah's EB is not just a bunch of blisters - it's so much more complicated than that. I'm so glad you share so much with us on your blog - it really puts all this into perspective!! Knowing what you and Matt and Jonah endure daily is amazing to me, and I know that your strength can only come from the Lord. Praise God for all He's done and for all He will do!

Continuing to pray here in TX - much love to all 3 of you!

Love,
Laura

4DLife said...

Best. Picture. Ever. Seriously. Love and prayers from Texas.

Jamie Fenley said...

So great to see the joy exuding from your words. Jonah sure does have a lot of pray-ers!

Beautiful pic- both mom and baby :)

Krista said...

Patrice, you are a brilliant lamp of Jesus in this dark world! Your being encouraged by us also encourages me. Thanks for the reminders of answered prayers. Your comment of "It's coming friends. Just you wait and see" brings tears to my eyes! Jesus answers prayers that glorify the Father. When I pray, I will not doubt, but excitedly anticipate His healing work! Take care, sister!!

Melissa said...

Soooo full of joy for you guys. God is just amazing. Whay are we surprised??

Anonymous said...

Jonah's Miracles just give me the chills. Praise God in the heavens and here on earth!

Toni :O) said...

Incredibly sweet picture and I couldn't be more thrilled with Jonut's news and weight gain...a true miracle. God has such plans for this sweet boy. I love you guys so much (I know, we've never met but I still love ya...your humor, personality and adorable child all wrapped up in one beautiful package!) and only wish I could meet you in person and hang out. I feel so lucky and blessed that I get to pray for such an amazing little guy. Hugs to you all and thanks for making my day with such wonderful news! :O)

Stephens Family News said...

Hi Patrice,

What a sweet picture!

Love and prayers from Raleigh!

Anonymous said...

What great news to hear from you. I was still rejoicing from the "no gtube yet" post and now an 8 oz gain! What icing on the cake! The photo was goregous. You need to "do something" with that one. It is an honor to pray for you. To watch and participate in your journey blesses me. To know we can return to you in some small way is just too much of a God thing for me. Jennifer in Southeast, NC

Wonder Woman said...

PRAISE YOU JESUS!

Jen Burns said...

Praise God. Praise God! He is SO GOOD..... This post just lifts the spirit more than words can say... So happy for you and Jonah!

Jennifer, Sunshine, Angel, Miss Thang, My Birdy (formerly Baby) said...

I have to tell you that each time I see Jonah, I cry...not because I'm sad but because I'm overwhelmed by and with my love for him and how God is building everyone's faith. I do hope one day for my children and I to be able to meet your family.

Carol said...

24
I love your picture. IT is just precious. Jonah looks so happy! And so do you! Rejoicing in Iowa!

chinamoon1420 said...

I love that picture. You can see your joy and Jonah's joy in your hearts.
Before I had my son I had only seen a handful of miracles or thought I had only seen a handful. Since I became a mother, my whole world has changed. I have been able to see so many miracles. I don't know if it was that I just didn't notice it before or if it is because of all the challenges my son has and will have has opened up other doors that wouldn't have been opened if it weren't for the fact that my son has had these challenges. God has performed huge miracles with him. I am so grateful to have my son to love here on Earth. I am also grateful to all the people who prayed for him when we so desperately needed it. It was a life changing experience. Anyway, what I am trying to say is it was no accident that I found your blog. I feel like I am repaying what was given to me. I know prayer works and if I have a chance to pray for others, I am there! I am so thankful to be a part of your story and blessed. I get to see even more miracles through sweet Jonah. What a blessing! Thank you Patrice for sharing his story and yours.

May God continue to bless you always!

mamatree said...

Praise God!!! God is so good! The doctors also wanted my son (he was born with a cleft lip and palate) to have a g-tube. He coded twice at Children's Hospital here in Los Angeles. We prayed and asked many people to pray for us. I mean, they tried to schedule the surgery and call our insurance! He showed them he didn't need it and he is still gaining weight!

More, Lord! We are praying for you, Jonah!

Love,
Teresa, Ali (5) and Sammie (3)

Annalien said...

I am SO glad about the weight gain - praise God! That picture of you two is absolutely gorgeous. I hope you have a large one framed for the wall!

Staci said...

I have to agree with the other commenters who say that you need to have that beautiful picture enlarged and framed! Also, I have cried while reading your posts before about the anguish and frustration you feel about Jonah's situation. I was glad this time to be able to cry tears of joy for this miracle for your sweet little boy. Thank you God for keeping this little boy and his parents in your loving arms. Please continue to work healing miracles in Jonah's life.

Lisa Worthington said...

Patrice,
I am so happy that God is providing for Jonah and for his parents. I am glad that the love and support of those around you (such as your family) and those near & far (your bloggers & prayer warriors) are also carrying you through. Please know that although I rarely comment directly to you, I read your blog at least twice a day (with little Rachel, now almost 4 years old!!!) and am constantly sending little prayers up for Jonah. He (and you) have many other "invisible" prayer warriors, I am sure! Praise the Lord for the recent miracles in Jonah's life and looking forward to many more!

Jackie said...

Our God is a God of miracles! Know that He also works on my life through you! Go Jonah!

Terah722 said...

Gorgeous picture of an amazing mom and a miracle son! I'm so glad that God has once again shown his amazing power and love this week with Jonah's weight gain. Every detail is important to Him! Rest easy knowing that He is carrying your burden and that He loves Jonah even more than you do. (It's hard to imagine, huh? It's hard for me to believe that anyone could love my children more than me.) Still sending many prayers up to our Heavenly Father on your family's behalf.
Love from Florida

Linda said...

Hi Patrice:
So glad he has started to gain weight again. What a relief you must be feeling. He sure is looking wonderful. That picture is just awesome. You both look so happy and joyful. Thank you God for everyday little miracles with these wonderful EB babies. Take care. Love Leah's Nana ps Check out Leahs blog. She was at the Dr.s recently too.

Kristen said...

As you are blessed, so are we. Praise God!

The Fisher Family said...

Wow, the pic at the end really opened the floodgates - just beautiful! Rejoicing w.you at the power of prayer and faith - 8oz, that's awesome!

madelyn said...

Look at both the sweet faces! You are beautiful - inside and out - and I love following Jonah's progress.

Anonymous said...

Praise God!!! I LOVE the picture. Pure,true love.

Kathryn said...

It's not even 8am and I have a bad case of the goosebumbs and I'm crying! I'm praying Jonah boy! You better believe it! What LESSONS I have learned from this tiny little baby!

Julia said...

That is an adorable picture!!!

erin said...

what a beautiful of the two of you...i see the joy in ya'll's eyes! much love and blessings~erin

Anonymous said...

Patrice, I live in WS and have followed your blog & prayed for sweet Jonah, but have never posted. I couldn't resist when I saw that beautiful picture. I always keep my eyes out for you in Target & Chick-fil-a! :) Your and Matt's strength and faith are an inspiration to us all. God bless you both - and that sweet baby.

Tracey

Jenny said...

Fabulous picture and wonderful news!! Yay for Jonah!!!!

Owen & Emily said...

http://www.blogher.com/special-offer-aquaphor
I thought of you when I saw this add on Mckmama.com
Hope you win!

Old School Acres said...

How lucky are you to have such a beautiful, growing boy! Way to go, Jonah!

Heather said...

How amazing! It's so cool to watch God answer such specific prayers. Keep up the good work of eating, Jonah!

Lisa said...

That is so wonderful with the weight gain. Sailor is 6 months and just over 12 lbs, so when you say he is over 18 lbs at 8 months I am like WOWZERS...Yes I do understnd he need more calories for healing and no one wants him to fall behind on the growth curve..
I love the pictue it looks like he is praying!!

Cristin said...

"…The prayer of a righteous man is powerful and effective" (James 5:16).

AMEN!!!!

PS: love the picture!!!

josh and annie said...

That is so great! You are not the only mama who cries over weight gain! When our little one was born she wasn't gaining any weight at all and at the first doctor appointment where her weight increased, it jumped way up there—a whole pound in 3 days! My husband and I were both so happy we started crying. I think the nurse was a little freaked out!! :)

Cristin said...

One more thing, I was thinking about this the other day while reading your blog: I believe in angels, I believe that we all have one, and I believe Jonah's is Gabe. I believe God needed Gabe to come to heaven so he could be Jonah's angel! I believe that they have a special bond that no earthly human can imagine.

"
Oh, I believe there are angels among us.
Sent down to us from somewhere up above.
They come to you and me in our darkest hour
To show us how to live, to teach us how to give
To guide us with a light of love"

Anonymous said...

I've learned lots from reading your blog. Here's another lesson I learned today: It's not smart to read your posts while a work. I'm sitting at my computer with tears coming down my face, and people are wondering what's wrong with me. That picture...oh, my...it just caused the floodgates to open. It is pure beauty, love, and Jesus wrapped up in a black and white image.

Anonymous said...

I see two sweet faces--and believe me, your blog does as much for your readers as for yourself. It strengthens my own faith to be able to pray for Jonah, and to see with my own eyes the results. Thank you so much for sharing.

Still praying,
karen in clemmons

trishandwade said...

Praise God! SO glad to hear about Jonah's big 8. I LOVE LOVE LOVE that picture of you and Jonah...it is priceless.

Mrs.Joe said...

Im so excited for Jonah and happy to pray for him and follow this amazing journey! Thank you for sharing this experience with us - it has encouraged me to see what God has done and can do!

Wanda Wilkinson said...

Love that picture. It speaks louder than a million words about how the two of you love each other.

Thanks for making us appreciate & remember what EB does..I look at Jonah's pictures & all I see is a perfect, beautiful sweet baby with some skin problems. I forget how EB affects his entire being.

You & Matt are doing such an awesome job with that precious baby.

Praise God to the highest.

Love & many, many prayers

Gracesmommy said...

What a beautiful picture... don't you just love when you capture moments like this. It looks like he is praying, and we continue to pray for him daily here in MI. We're so excited with you that God continues to work miracles in your lives! If anyone deserves them it's your sweet little Jonut!

Mandi @ It's come to this said...

LOVE that sweet picture!!! And Rejoicing with you over 8ounces!!!

Peggi said...

Looks like he is praying in that picture:). He is just too cute.

Anonymous said...

Way to go, Jonah! And the picture of you and your Momma . . . so sweet! Keeping you in our prayers. Karen & family

kelli said...

Never commented before, but I check in on you and your little guy often. On good days and bad days, you inspire me with your outlook, faith and attitude with this struggle. I have a recently diagnosed autistic 3 year old boy. I understand how important a good attitude is and whenever I start to feel frustrated I think about you guys and how you handle your whole situation with grace. If you can do it, I can do it! Enjoy today's victory. Love to you and your family.

ashpuck said...

So happy for Jonah's 8oz gain! Keep up the good work.

Oh, I love the picture. Very sweet

~Ashley

Sherri said...

Beautiful picture!!!

erika said...

Yay for Jonah!!! Ahhhh, the miricle of prayer :)

Janet said...

What an absolutely beautiful picture of the two of you! This is a keeper, for sure!

Christina said...

God is so good!!!!!

brandie said...

okay...totally loving the pic!!

woo hoo for 8oz-Keep up the good work Jonah!

And glad to hear the g-tube isn't as scary as it first sounded. Suppose just like anything it has it's pro's and con's

Sandy said...

Amen! Hallelujah!!! Praise our God! He CAN do anything and he proves it all the time. Again I say Amen! Hallelujah!!

Much Love & Prayers

trying4two99 said...

I'm coming outta the wood work. I've been reading your blog for several weeks. I found it off of another blog I love. Your faith gives me so much hope that GOD is faithful. My Hubbie and I have been ttc now for 7 (seven) years. I believe, but it's hard. You are a great mommy! Your son is beautiful. I have a 10 year old (from a previous relationship). God is great!!

Erin said...

That picture is just precious.

Kelli said...

We rejoice with you!!! Absolutely positively gorgeous photo!! Praying in SC!

Ebeling Family said...

can I get a WOOT WOOT!!!

Praise God from whom ALL BLESSINGS FLOW!

so happy for your not quite so little guy :)

Em

Ebeling Family said...

oh, and that picture is FABULOUS. She captured a very beautiful moment.

Jennifer, Sunshine, Angel, Miss Thang, My Birdy (formerly Baby) said...

I am hoping and praying we did not receive an update this evening because things are going very well and you are celebrating because he chowed down today and now he is sleeping peacefully and you have decided to do the same.
Prayers & thoughts are with you all.

Claire said...

That picture is adorable! So thrilled with your news!

Cxx

Hen Jen said...

beautiful photo of you two! I'm new to your blog, but wanted you to know that I am praying for Jonah.

God bless you,

beach2lady said...

thanks for sharing such precious pictures....Jonah is so adorable and someone is a great pumpkin carver !

Melissa said...

I love your faith, Patrice. One in your shoes could look at the circumstances and feel defeated, but instead you choose to look at your past answered prayers and say, "Well, look at what my God has done, so hang on and see what he's still going to do." Or, you know, words to that effect. ;) I love you, sweet sister in Christ. Still praying in the wild west of NM!

Amanda Sikes said...

God is so good. He is the same yesterday, today, and always. I DO believe that He still works miracles big and little. Yours is coming. I do believe that.

May God bless you with a great day of worship in the Lord. I am praying now that you will make it to church.

JustMeMJ said...

Gorgeous photo and SO happy to hear re: your progress! We use periactin also & there is a dosing schedule to avoid the extreme fatigue that can come in the beginning - feel free to email me if you'd like to know about it (justlavaca@live.com).

Blessings to you & Jonah & your family!!

rameelin said...

greatest picture EVER! He is precious precious precious!!!! Still (always) praying!

Debbie,mother of two said...

i love the B&W pic of you and Jonah. It is a great pic of you both. So thankful for what God is doing in yours and Jonah life. Thank-you for giving us the things we need to b pray for. Remember we are praying.

Anonymous said...

Praise God!!! I LOVE this picture. I'll continue to keep you in my prayers and wait expectantly for God's miracles in Jonah's life!

Laura

Confessions Of A Working Mom said...

I'm so thrilled with Jonah's weight gain, but I would completely understand if you decided to insert a g-tube eventually anyway... sort of like an insurance policy.

And I have to tell ya, I think even if you & Matt were the only ones prayer, I still think God would hear you and listen because of the amazing passion and intensity of your pleas. I don't think He ranks our prayers based on "how many", but instead, on "how urgent".

Just my two cents...

~Elizabeth
http://www.confessionsfromaworkingmom.blogspot.com/

Tricia said...

Patrice, The picture of you and Jonah is beautiful. If it were me and my kids, I would frame it and put it on the wall. I haven't been able to read your blog for a few weeks because I was too sick to do much of anything, so I am catching up today. I am sorry and not sorry all at the same time that I missed all the drama. I am glad you handled it well. I wish it had never happened. I wish I had been here to encourage you. Take what the naysayers say with a grain of salt, or better yet sand. I don't know about you, but when a grain of sand starts to annoy me, I just get rid of it. :) The circumstances you have been through would make anyone feel accusations like that more accutely. You are a great mom. Anyway, I am praying for you. God bless.