Wednesday, March 18, 2009

jonah - wednesday, march 18th

We got the diagnosis today. Jonah has some form of Junctional Epidermolysis Bullosa. We are not sure which kind. If he did not have Collagen 17, we'd know for sure he had non-Herlitz. He does. If he did not have Laminin 5, we'd know for sure he had the Herlitz form. He does. So both things are present, but obviously not in correct proportions or something. I don't really understand it. Basically, there is a wide spectrum, and all we know at this point is that Jonah falls somewhere on that spectrum.

The short version is that we don't really know where Jonah stands, and we still don't have a prognosis. Herlitz is the form where babies don't make it out of infancy. Non-Herlitz has a much better long-term prognosis. In any kind of Junctional, there is a risk for respiratory issues and teeth/mouth problems... among other things. The tests have told us all they will tell us. Observing Jonah over time will tell us the severity. We will probably not really know anything more until Jonah is close to a year old.

Here's the link to the DebRA site to give you an overall idea:
http://www.debra.org/modules.php?op=modload&name=News&file=article&sid=18#10

That'll catch you up to speed as far as what we know. Like I said, I haven't really done much research on the different types until now.

I really have no idea what it all means or if this is good news or bad news. Please just be in prayer for all of this - as I know you already are... that Jonah will lean the less severe way... that we will continue to see improvement and healing in Jonah's skin. He is SOOO strong. I really can't believe it. Even the OT and PT were talking about how strong he is. It is so hard to bandage him and do his range of motion exercises. But man, he's a fighter.

Maybe it's okay that he doesn't fit into a specific category. I think I like that Jonah's diagnosis is not so set - leaves it pretty open to God's interpretation, doesn't it? Leaves lots of space for prayer and miracles.

Thank you for joining us in praying without ceasing - all days, all hours, all time zones. Jonah is covered. You guys are amazing.

64 comments:

Nicoolmama said...

That little boy of yours is amazing. I will continue to pray.

Rebekah said...

Good to hear from you. I was waiting for you to post a diagnosis, but it seems so uncertain. Stay strong, we care deeply for you and your family. Thank you for keeping us posted.

Sara Jo said...

Tonight in bible class one of the ladies did a devo on "Waiting on the Lord". All I could think about was you and all of the waiting you have been through, and the waiting you will continue to go through. I don't understand it and I probably never will, but what I do know is that while you are waiting on our Lord & his timing, you & Matt are growing an unwavering faith, and building a foundation for Jonah that is rock solid rooted in the Father. I am so sorry for all that you are enduring and I wish there was something I could do or say to bring you some peace. many prayers being lifted for you all...

avbernat said...

Although the diagnosis can range, it's good to know that you at least have a starting point. Every time you talk about Jonah and his therapy, I think of how strong he is, he is a FIGHTER! Just like his mommy! :D

Stay strong, stay positive... We will continuously pray for little Jonah. All our love and big smoochie kisses to Jonah.

Analiza

two red heads and two brunettes said...

Still praying.....

For your peace of mind and heart, for your husband, and for that very cute blonde haired baby boy.

Diana Lopez said...

Thats for the update, your right it does leave a space open for god so we can see how great he is. No matter what happens we all have seen his great power in getting all of us together. to see his great work. I will for ever be praying for Johan, you and your husband, god bless you. I found this on Internet:

God's Loan

"I'll lend to you for a little time,
A child of mine," He said,
"For you to love the while she lives
And mourn for when she's dead.

"It may be six or seven years
Or twenty-two or three,
But will you till I call her back,
Take care of her for me?

"She'll bring her charms to gladden you
And should her stay be brief,
You'll have these precious memories
As solace for your grief.

"I cannot promise she will stay
Since all from earth return.
But there are lessons taught down there
I want this child to learn.

"I've looked this world over,
In my search for teachers true.
In the crowds that throng life's land,
I have selected you.

"Now will you give her all your love
Not think the labour vain,
Nor hate me when I come to call
To take her back again?"

It seems to me I heard them say,
"Dear Lord, thy will be done.
For all the joys a child shall bring,
The risk of grief we'll run.

"We'll shelter her with tenderness,
We'll love her while we may,
And for the happiness we've known
Forever grateful stay.

"And should the angels call for him
Much sooner than we've planned,
We'll brave the bitter grief that comes
And try to understand."


"Let the little children come to me and do not forbid them;
for such is the Kingdom of God." Mark 10:14

Carol said...

He is strong, so are his mama and daddy. I will pray!

Karla said...

Ultimately, when I think of Jonah, the first word that comes to mind is "fighter." I will continue to pray every day for your little one and ask God to continue to give you and Matt strength, support, courage and peace. Jonah is an inspiration. I will continue to pray for improvement in Jonah's condition - and ALWAYS for a healing. I know God can work a miracle for Jonah. Don't ever give up hope.

Sending prayer and hugs your way,
Karla (TN)

Amy Reber said...

I couldn't sleep tonight until I heard about the diagnosis. One thing we ALL can rely on is that GOD knows...and that's enough. God created Jonah, and knew him before we did. God has plans for little Jonah, and I'm still praying for a miracle. Love, peace, and rest to you all tonight. Love, Amy

Stacey said...

Prayers for you and your family!! We will continue to love Jonah one day at a time. May you continue to draw strength from our awesome God!! Never underestimate the strength of God-fearing parents and the love that Jonah will grow up with. May God continue to bless you!

Janel Waters said...

Nothing with EB is black and white. Every child/person has their own form, their own issues, their own treatments etc. It is all through trial and error that you will find what works for Jonah.

I have been told that I am one of 2 people in the entire world that have EB the way that I do. Technically I have RDEB, however, my Dad, Brother and other family members have DDEB (dominant dystrophic). Through genetic testing while pregnant, I found out that my mother is also an EB carrier. So I inherited the recessive gene from my mother, however, I have symptoms of both Recessive and Dominant.

Aquafor never worked for me, to me it burns and makes me break out more - others swear by it. I have never done wraps and bandages - they make me sweat and make me break out more - others would never think about not wrapping.

Basically, what I am saying is that Jonah is his own little man and maybe its good that he doesn't fit neatly in prediagnosed box. Even if he did you would still have to find your own way with him.

I have been praying for you all, all day. I am glad that I got to read your post before going to bed tonight. I am so sorry that yesterday was such a struggle. Please NEVER feel guilty for having the thoughts that you did yesterday - they come with the territory!

I know that I have said it a million times - but PLEASE feel free to call me anytime!

Janel

Kristie said...

I got chills reading this post. I am gathering that he falls somewhere in between and it is up to God as to which way he takes him.

I will continue to pray he takes him to the less sever one and from what it looks like that is the road he is taking him down.

I praise God for Jonah right now and God I ask you cover that baby under the blood of Jesus.

Pss..Can we nickname Jonah...FIGHTER?

Kristie

Sus said...

Sweet love Jonah. I pray that the diagnosis brings more knowledge, planning and a tiny bit of "we are doing the right things" comfort for your mommy and daddy.

God is the Ultimate Physician...He knows...and we know, He provides.

dg darling said...

I have been praying all day long knowing that today was diagnosis day. I'm sorry that things were not more clear cut, but as you said, maybe it's better that way. I send prayers up multiple times a day for your sweet boy and will continue to do so. Thank you for sharing his sweet spirit with the rest of us...

Sara said...

Wow, I thought for sure he had RDEB. Not that is matters but there is no longer the classifaction of hertliz and non-hertliz. It just changed this past summer. Its now severe Junctional and non-severe Junctional. I have known kids with severe Junctional to live longer than anyone ever expected and those with non-severe junctional to live just a few weeks. It really depends on other complication that arise as well as infection. Airway issues can happen in ALL forms of EB, not just Junctional. But being that he does have Junctional, I would advise against future use of the NG tube and go straight for the g-tube if it gets down to that. There are MANY families with children who have some form of Junctional that would be more than happy to talk with you when you are ready:-)

You can also have genetic testing done to determine which form of junctional he has. www.genedx.com is the ONLY company in the US that does DNA testing for EB. It may not tell you anything more than you already know, but I personally think its good info to have and am really glad we had testing done on my daughter.

Emily said...

Your family is in my prayers. I rejoice with you over the small victories and pray there will be many more to come. Not having answers is difficult but as you know, God is still in control.

Vonda said...

I'm praying for rest and peace for your family tonight and for healing for sweet Jonah! Your precious boy has touched our hearts and our lives and we will continue to pray for him.

Kristi said...

I stayed up tonight so I could get Jonah's update. I'm sorry that it seems so uncertain, but like you and everyone else said, maybe that's a good thing? Jonah will find his own way for what works for him.
Many prayers coming your way from central Illinois. Thank you for keeping us posted.

Kristin in Austin, TX said...

Like many of the others who have commented, I don't personally know Jonah and his family. I found Patrice's blog because of a link someone had posted on another site. That was a few days ago, and I have been checking the blog several times a day since. I can't get Jonah out of my mind and HEART.

I have prayed for him and his mommy and daddy. I've marveled at the strength and courage of Jonah and everyone involved in his care. I have thanked God for all of my many blessings (and like someone said, the never-before-thought-of blessing of "skin that sticks".) It is a beautiful and amazing thing that little Jonah has inspired all of these deep thoughts and life lessons in a grown woman!

I'm a mom of two, and I think the other moms who comment here can relate when I say that motherhood has brought with it such a "mothering" instinct towards all children. Once you're a mom, you find yourself thinking "What if he were my child?" when you know or read about a child who is suffering. I hurt for Jonah and wish he didn't have to have EB. I grieve with Patrice and wonder if I could find the strength she has shown.

Let's make sure all of us mommies send up another prayer for Jonah tonight, and send our extra-special "mommy love" he and Patrice's way.

Anonymous said...

Jonah is a normal child with a special need.
Diagnosis in his case can only give you past facts and possible out come. Jonah will determine his own future with your help.This is because only he is Jonah and that makes him a Special individual.
Like all new parents you will find that you will be able to do what ever is need to comfort your son.
Aside from his special needs, you will have many times of joy and happiness together as a family.
In times of trouble reach out your hands and heart to God. God will send you someone to help. You may be surprised for that someone may be you at times.
God watch over this famliy in there times of need and times of joy. Bless them and guide them through each day hour by hour,for the future is not written in stone but what you Lord make it.

God Bless.

Stacia said...

I have been on the side of not having diagnosis for my cause of miscarriages, so I know how frustrating it can be. But I like how you said that there is room for a miracle. Praying for all of you and Jonah to be healed.

Brooke said...

Jonah is proving he's determined to fight. He's an amazing little boy. The not quite defined diagnosis is no surprise to God and I think you said it best - more room for God to move!
Continuing to pray...

LeeAnn said...

Patrice,

My baby is keeping me up at 3:45am to pray for yours.

I knew I needed to post when I woke up and was already praying (did you know you could pray in your dreams?!).

I'm glad you have results back from the test, but tend to agree that God can do so much in the midst of the uncertainty. Maybe if the answer was more clear, we'd start thinking we have more control over the situation than we really do anyway.

This reminds me of Paul's words in 2 Cor when he is pleading with God to take away what he thinks he can't handle:

8 Three times I pleaded with the Lord to take it away from me. 9 But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 10 That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

You may be a long way from "delighting in weakness" and that's okay! But hold on to the fact that it's not YOU that has to be strong, it's HIM. HE provides what you need...thank goodness it's not up to us!

I also wanted to share the lyrics to a song from Fireproof that has really touched me since it has come out. Since Jonah was born, I can't listen to it without crying, knowing that this is what you are living with day by day. I hope the words minister to you like they have to me:

While I'm Waiting - John Waller

I’m waiting
I’m waiting on You, Lord
And I am hopeful
I’m waiting on You, Lord
Though it is painful
But patiently, I will wait

I will move ahead, bold and confident
Taking every step in obedience

While I’m waiting
I will serve You
While I’m waiting
I will worship
While I’m waiting
I will not faint
I’ll be running the race
Even while I wait

I’m waiting
I’m waiting on You, Lord
And I am peaceful
I’m waiting on You, Lord
Though it’s not easy
But faithfully, I will wait
Yes, I will wait

I will serve You while I’m waiting
I will worship while I’m waiting
I will serve You while I’m waiting
I will worship while I’m waiting
I will serve You while I’m waiting
I will worship while I’m waiting on You, Lord

Tonight I'm praying that God will give you the peace that surpasses all of our understanding as you wait on him through the many moments of this journey, as uncertain as they may be.

Much love,
LeeAnn

Anonymous said...

I don't know what kind of blog stats you get, but last night as I kept checking to see if you'd posted a 'diagnosis', the site was so busy I could not get there half the time. I knew that everyone knew it was diagnosis day and were checking as I was for an update. Thanks for the specifics and letting us know how to continue to pray.
-jlmcq

Lisa Worthington said...

Patrice...thank you for sharing news about your darling son Jonah with us. Yes, the prayers were in full force yesterday and that will continue. I pray today that God will grant you joy as you spend time with your little one and that God will grant Jonah a day with very little or no pain. I pray that over time Jonah will grow and thrive and that you will discern what works best for your son in regards to bandage changes and range of motion exercises. Lifting your family up that miracles will be performed,
Lisa

Kristin said...

Many prayers for sweet Jonah, for all of his caregivers & especially for Patrice & Matt.

Melissa said...

You know, I really don't mean to keep making comparisons between what ya'll are going through and what we went through, but I swear sometimes it just seems so similar. Like I was telling you before, with Bryson, there are three types of what he has, one with normal lifespan, normal mental abilities, and milder craniofacial anomalies, one with severe anomalies, mental retardation, and early childhood death, and one where they don't live but a few days/weeks. Bryson has the severe anomalies but the normal mental capacity and is now 16. While the severity of his skull leads to a Type 2 diagnosis, the normal mental status and his age are more like Type 1. So, he doesn't fall completely in one category or the other either if you look at the details. Sounds like Jonah is the same. My hopes and prayers are that, like my Bryson, Jonah will be a strong young man and make it through all of this stuff that he has to go through, and that he will lean more toward the milder version of what he has, too. Hang in there, guys...

Jackie said...

You all, and our Lord, are the truly amazing ones! What a beautiful way to look at things! God will honor your faithfulness. We will continue to pray for you.

Bobbi said...

He is certainly a fighter. Praying for his recovery

Anonymous said...

Patrice,
Thank you for your faithfulness to share about Jonah even when it is late and I am sure you are tired. It means so much for those of us who have come to love him without even really knowing the Williams family.

Thank you even more for your faithfulness in God's ability to work in ANY situation! I love that you see uncertainty as a place for His interpretation. He made Jonah unique and special to Himself for that very reason!

Thoughts and prayers for you all!

kelly said...

supedit is an inspiration to see your faith and positivity is such difficult times. jonah and your family are in my thoughts and prayers throughout the day! hang in there! you are not alone through this!

best,
kelly

Michelle in Va said...

Continuing to pray for sweet baby Jonah and you and Matt and your families. Jonah is such a fighter. I went back yesterday and re-read many of the posts and how far he has come in his short time here has truly been amazing- his little body has fought off infection, his little face has really healed from the pics we have all seen, he has been eating like a champ. These are already things that God has helped Jonah do. I truly believe that God will continue to heal sweet baby Jonah, it is for certain he has been placed on this earth for some amazing reason only He knows. The world is certainly in love with this little guy and your family. I know your story has really pulled on my heartstrings and made me see what is truly important in life. I think and pray for you all so often during the day. I praise God everyday for the blessings he has bestowed upon us all. In continuous prayer, God is sooo Good!!!!

Goldylocks said...

Continued prayers for beautiful Jonah. What a fighter he his. And you and your husband are so so strong.

Aimee said...

Well, we had him covered from 2-3 a.m. here in our Indiana home. For some reason my 5 month old girlie was awake in the middle of the night! I thought maybe the Lord wants me up praying for Jonah. Ruby and I prayed for his tiny hands and feet to heal. We prayed he would not be in pain. We prayed for his diagnosis(no post before I went to bed at 10:40). I thanked the Lord for Jonah taking his bottles so well and prayed he would never need the feeding tube again. I thanked the Lord for holding Jonah's future in His hands. And I prayed for Jonah's Mommy and Daddy too. We are praying without ceasing!
For all the Dennys

Sandy said...

Patrice, I LOVE what you said: "Maybe it's okay that he doesn't fit into a specific category. I think I like that Jonah's diagnosis is not so set - leaves it pretty open to God's interpretation, doesn't it? Leaves lots of space for prayer and miracles." - I think it's amazing how Jesus followers look at situations. I'm still praying for you, Matt and of course "our" little Jonah. May God instill peace and joy in your hearts today (and no pain for Jonah). Amen.

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

It seems like you have all been on a learning fast-track forever, I know. Now that there is a diagnosis (of sorts) you will be able to settle into more of a routine with your amazing little miracle.

Faith, love, hugs and prayers are truly wonderful healers - for the patient and for the caregivers!

And always take comfort in knowing that sweet Gabe is helping his baby brother, too!

Grannie in Florida

Anonymous said...

Thank you Patrice for sharing Jonah's incredible story. You East Coast people much not need much sleep! Jonah is a rebel (the mohawk still sticks in my head), a fighter and will defy the odds. You are lucky he's on your team and I'm sure you feel lucky to be on his team.

Stephanie said...

Praying for the less severe!!!! Praying that Jonah will continue to be strong and his skin will heal! Thank you for sharing your precious little boy with me!!! He is such an inspiration!

Julie said...

I agree - your little boy is so strong and just amazing. What an inspiration he is at such a young age. Praying for you as you go through each day and try to figure out what it all means. Praying for Jonah and his LONG life ahead.

anne conover said...

May today there be peace within.

May you trust God that you are exactly where you are meant to be.

May you not forget the infinite possibilities that are born of faith.

May you use those gifts that you have received, and pass on the love that has been given to you.

May you be confident knowing you are a child of God. Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love.

It is there for each and every one of us.
Saint Theresa

Anonymous said...

I too have thought of you when hearing John Waller song (While I'm Waiting). You have been a beautiful portrait of what it means to serve while waiting.

I am grateful that our Lord still performs miracles, both big and small, and that through the vagueness of Jonah's diagnosis only He will be able to take glory for the victories.

He HAS given you more than you can handle Patrice, but not more than you can handle with His help. Continue to lean. Continue to cry out. Continue to be obedient. Continue to worship. Continue to love Him more than you think you know how. He loves you more than you could ever fathom and has already laid out yours and Jonah's paths. He goes ahead of you to make your path straight.

I know that you are being showered with words of encouragement and continually being lifted up by those who love you and perfect strangers. I am one of those strangers, but the Lord has gripped my heart regarding your life - I weep for your family and celebrate with your victories. I find myself sharing your story and awesome testimony almost daily. I stay up late to read (and reread!) your posts. I don't know why - but I will continue to do so, along with the the many other warriors!

May the Lord bless you and keep you. May the Lord make His face to shine upon you and be gracious unto you. May the Lord lift His countenance upon you, and give you peace. Amen

Much love from Pfafftown,
CML

Channe said...

We're still praying for Jonah's miracle

LisaShaw said...

This says it all:
"Leaves lots of space for prayer and miracles."

Gene and Annie said...

I love your perspective about the diagnosis! It does leave room for much to happen and doesn't keep him in a little box/label! God is in the business of doing miracles and I pray that your sweet little boy is healed completely!

Sheryl from Colorado said...

We are praying for your sweet family. Know that the Lord of our lives is a perfect healer and provider. He will provide what you need. KLove radio station (Christian) called us yesterday and asked for prayer requests. My son Matt (10) was sitting with his Daddy and I and spoke up and said Jonah needs prayer. So...Jonah is being covered in prayer by a host of "prayer warriors" across the country. We explained the situation and said that this sweet baby has touched many lives, my 10 year old included. Please keep us up to date as to his healing. Our prayers are with you!

Anonymous said...

Darling Patrice, this is by far the most difficult chapter in your life. When you experience the moments when you feel you cannot even function, know that you are being held up. Know that you have made a difference in the lives of hundreds of people because you have chosen to share your story. Know that there are people near to you both physically and emotionally who will be with you every single step of the way. Know that when his tears and pain are too much, you can walk away (just come back okay :-) ). Know that I am thinking of you.

Thank you for taking the time to update us. Although it is painful to write about, it is extremely therapeutic. All of your feelings are so real and so normal. It is okay to feel all of those feelings and have those moments when you want to just give up, run away, and never come back. Be sure to take care of you.

Kimberly
WI

merrymom said...

Jonah and his family continue to be in our prayers. He is a strong little fellow teaching all of us so much. He is blessed to have the parents God gave him.

After working with disabled children and their families for over 25 years, the following post still is one of my favorite analogies.

http://www.keyministry.org/0705.html

Desha said...

I know as his mama, you want to know exactly what you are dealing with so you can help your little boy to fight it. He is doing such a great job, and so are you. I am praying that God would continue to give you and Matt and especially Jonah strength on this journey, and that the doctors would have wisdom in treating him.

Anonymous said...

That is great news! Jonah is going to THRIVE! It's hard to see it now because he is so fragile, but every baby is. Dont fret about the potential for scars or temporal damage. He is alive, and WELL! With the life he already has going for him, this kid is going to be happy and live a full life. Our skin doesnt make us who we are, our heart and spirit does!

Anonymous said...

I am glad you got some more answers. I agree with other writers, we found that the additional genetic testing was very helpful. There are no answers that will tell you exactly how Jonah's diagnosis will look in terms of medical problems. Alexander (with RDEB), should not have problems with his airway but he has struggled with this. I also agree with the other writer that avoiding the NG tube is very important. We are thrilled with the G tube. The less damage to his throat and airway the better. I am happy for you that the results came back as Junctional and not Dystrophic - we will pray that Jonah has a mild form and lives a long and healthy life.

Katherine said...

Patrice, As usual, I'm so touched by your transparency and your eloquent ability to just pour out the contents of your heart. I know you didn't sign up to be the new poster family for EB, and that you'd give almost anything to not have to fight this fight. But we will be here to support you, and you know you can lean on us. It made my day to talk to Matt yesterday; just to hear his voice and talk to him about some of what I've been feeling and tell him how very much we love you ... and that I can't wait to meet Jonah in person. Enjoy Debbie and Gerry's visit, and try take advantage of their presence ... if you can take any kind of break at all, do it! All new moms need one once in a while. Love you so much!

Wanda said...

You are right, Jonah has not been put in a "category" God left him open to perform His miracles. My prayers are with you day & night. May God continue to bless & heal Jonah & give you & Matt the strength to carry on. Know always you are surrounded by prayer 24/7.

Mimi said...

Continued prayers coming your way always!!!

Kami

Mandi said...

In cases like this (when a straight diagnosis can't be given by doctors) I choose to believe it's because God's in the process of healing!! Through prayers & the strength, faith & love of your family, God is healing Jonah!! From the outside it's hard for Drs to place him in any category ... b/c he's neither at this time - God's during a work in him!

Continuing to pray for your handsome little boy!!

The Pascua Family said...

Were praying over Jonah, your family and the physicians and nurses attending to him every day. Were leaning on God for a miracle and interceeding at the foot of His throne pleading for healing, comfort and again a miracle! May this testimony honor God and glorify His name.
Jonah is beautiful as is his big brother too!
The Pascua's in Southern California!

Frontline Church of Christ said...

Matt & Patrice:

We are a group of teens working on a church plant, and Chris Woolard used to be our youth minister in VA. We heard about your son JOnah through his wife Lindsey's blog, and we just want you to know we have people that read our blog on xannga and here on blogger praying for your son and for you!
God Bless You!
- The Frontline Church of Christ Team

Jane said...

Everyone before me has said exactly what I wanted to say. What a blessing that Jonah is in his own category. This does leave an opening for God to perform a miracle. He is a strong little guy and fighting with all he has and you and Matt are doing all that is humanly possible for him. As I have said before, just live for today and enjoy every minute. Someone here inquires about Jonah every day, so there are many more praying for all of you that are not on Facebook or going to your blog. It is just amazing how the word has gotten out and people are praying all over the world. Hang in there Patrice, God will be with you every step of the way. May God Bless all of you, continuing praying for you all.

Wendi aka Texas Christian said...

I just sat here and read Jonah's story... and my heart is breaking for you and your family. I hope and pray that your little one pulls through and eventually grows out of this condition. I pray for strength for you, wisdom for his doctors, and healing for Jonah. I wish I could see your photos, but for some reason they do not show up for me.

Sarah R.Conley said...

It took the doctors 2 years to give my daughter a diagnosis. She had a heart defect but they kept insisting it was a genetic disorder) Not having a diagnosis wasn't so bad. I felt it was a blessing in a way. We didn't have any terrible expectations for her life... we didn't get "Boxed in" to the words the doctors spoke over her.... We were more open to hearing what Jesus said. Sometimes the words of a medical doctor can seem so strong, definate, etc. They are just people. Our God is bigger!!! He has the last say when it comes to our babies. Jonah is a unique creation of the living God. He is not a statistic or just a baby with EB. He is more than that! God Bless you :0

Beth.. One Blessed Nana said...

You are an amazing young woman. I am praying for Jonah as well as all of you. He is such a precious little child of God. No diagnosis can get in the way of God. He is Jehovah-Rapha - our healer. I have Jonah on my prayer page on my blog.

Praise His Name,

Beth

UDMom729 said...

Praying for Jonah and admiring your faith... he is a beautiful little boy!

Claire said...

Praying, praying, praying. You guys are amazing.

Cxx

Anonymous said...

Hello, my second son has an "unknown" genetic disorder that causes his blood to not clot, low platelets, low iron, etc. etc. Sometimes I get frustrated that we do not have an official diagnosis but I know that God knows. It is scary knowing that if he breaks his arm, he could bleed to death right then when he looks like a normal boy. I will continue to pray for your family and sweet son. May you find help from the doctors and comfort from the Lord.
Jessica in Atlanta

momma said...

i'm a few days behind and am trying to catch up.

you are correct in saying that the broad diagnosis leaves things open for God's interpretation.