Thursday, July 9, 2009

Answers?

For the past few weeks I have not called the dermatologist for Hope's biopsy report because quite honestly she was doing well and I was afraid that by them putting a label on her, that all of that would some how change. The thing is that we needed to get that information to know how to best care for Hope and know what to expect so today Howard called and we got her test results and to say I am slightly stunned would be an understatement.

Hope has Epidermolysis Bullosa. In fact Hope has Dystrophic Epidermolysis Bullosa. This means there is a defect in the collagen VII gene and the element that allows the layers of skin to stay together is compromised therefore any friction or trauma to the skin can cause blistering. This form of EB from what I have read is one of the most severe forms. Where the skin blisters there is scarring because of the depth of the wounds.

Like I said, Hope continues to do well, she is a great nurser, which as I understand is not typical of children with DEB, she is wearing normal diapers and normal clothes and being handled just as any other baby. She had gotten a couple of tiny little marks on her left hand but aside from that her skin looks great.

When the diagnosis was relayed to me by my sweet husband my initial reaction was to become discouraged and upset as many patients with this form of EB endure great pain and complications, it is also the form that I was afraid of because her chance of skin cancer would be GREAT.

The thing is that I have read all of the info and definitions of this disorder and really Hope doesn't fit. I have no idea what the future holds for our girl, but for now I am trying hard to remind myself every moment that fear sneaks back in that ONLY God can define her. Not this diagnosis, not a doctor, only God. He is the writer of her story and I will continue to pray for her and for God to heal her. Please join me in this prayer.

39 comments:

Jennifer said...

I personally think she has already been healed:) truly I do.

Your Friend in Christ,
Jennifer

Tiffany Lockette said...

A Mother knows her child. Trust your faith and your instincts. Don't let a diagnosis label Hope. My prayers are with you guys today and always.

Charity said...

I COMPLETELY with Jennifer, she has already been healed. What other explanation could their be other than God is great and good.

Charity

Sara said...

I am glad you have an answer, though I know its not the one you wanted. DEB can start out very, very mild in some babies. There are two forms as you know, Dominant and Recessive. DNA testing would be the only want to find out which of the two types she has. If financially possible I would get the DNA testing done at some point. More so for Hope so she will have the information and not always wonder which form it is.

She is doing great thus far and she may continue to do great.

There are LOTS of other EB moms besides myself who are ready and waiting to answer any questions you may have. There is also a GREAT EB Support group call EB Friends. You can join, your family, friends, its very supportive and everyone is so happy to help in anyway they can.

Everyone with EB is different...some have all the complications, some just a few of them. There is a family in Calf who has a 1 month old w/ DEB as well. Here is their web site if you are intrested in talking with them http://careforanabella.blogspot.com/

they are on EB friends as well.

Take care and the best thing you can do it continue what you are doing and if are comfortable reach out to other families. So many have said that is the best thing they have every done!

Sara Denslaw
EBS-DM
www.garrettshouse.org

Mary Ellen said...

I will continue to pray that God will keep her skin healthy and wash her little body with His grace and love. Which we know he is already doing and will do no matter what the future brings. I pray for healing of this little baby that I dont even know but I just want you to know that I do pray for Hope and your entire family everyday!

Katie Baker said...

I've been keeping up with your story since Hope was born. I pray daily for her healing and will continue to do so. I hate to hear the results but as you said, it does not define who she is. She has overcome so much in the short amount of time she's been here. She's a fighter! As Jennifer said, "she has already been healed". Praise God! Many prayers sent to you and your family.

Sheryl said...

maybe, just maybe there needed to be this serious diagnosis so that God's miracle would be even more evident!!

love ya, my friend and praying often.

Anonymous said...

Don't let a diagnosis taint your little girl. You can take any situations that arise as they come (you are strong and you have faith) until then just let her be your sweet angel! Love her to pieces and just let her be your little one!

Alicia said...

Praying for Hope, you and your precious family.....

Pam said...

Wow - wasn't expecting this. I so hope she continues to have few, or no, complications at all. I agree with Sara that maybe further testing would help clarify things?

And not to put a negative spin on this post...but...why did the derm. not call you????

carol said...

I'm so sorry. That is a bitter pill to swallow. She's a beautiful little girl and God has a plan for her life.

Christa @ Quintooples said...

Praying.

The Whalen Family said...

As I sat here reading through your post, all the memories of finding out that Logan would be born with Spina Bifida: Myelomeningocele and Hydrocephalus came flooding back to me. I remember the shock, the hurt, the frustration, confusion and heart break. I remember all too well walking out of the sonogram room after it was confirmed and how my heart just ached for my baby boy and I remember just like it was yesterday, when he was born. It is a constant daily struggle for me to NOT let his disability define who he is. When I feel like I am about to break down, I put on the song that got me through the rest of my pregnancy with him and I remember that God blessed us with this precious little gift and for some reason He felt that our babies needed something extra to complete them. Only God can truly tell us who our children are. And, I will be praying every day for you guys. Hope is such a sweet and beautiful little miracle and I know that the Lord has some special plans for her. Look at how many lives your children have already touched! I can definitely tell you that I am one of them. I love you guys so much! And, I am praying whole heartedly for everyone!!

-Tiffany

Slatsette said...

I am praying for her to astound doctors, to make them doubt their diagnosis.

I am praying every day for you all.

Your Sister in Christ,
Amber

asplashofsunshine said...

Keep doing as you are doing. You know how to handle her and care for her. Lots of hugs from CA!

Laurie in Ca. said...

I love you Kristy and you KNOW that you and Hope have my heart. My prayers continue and I feel that her healing is already taking place inspite of the diagnosis. God is good all of the time and His eyes are on Hope.

Love and Hugs, Laurie

kdliberty said...

I am so sorry it turned out like this. I would talk to someone from the DEBRA foundation. They do reasearch as well as supporting families with EB. They may have more insight into what is going on. Remember EB shouldn't define who she is. Praying for Hope and your family. -KD

kdliberty said...

I just remembered something and went to make sure I was remembering corectly. This is a quote is from this web page

http://www.debra.org/modules.php?op=modload&name=News&file=article&sid=18#27

"Transient Bullous Dermatosis of the Newborn *(TBDN) appears to be a form of DDEB noted by blistering and skin fragility that appears from changes in the collagen VII gene. For reasons unknown the problem seems to correct itself during infancy."

I pray that this is what Hope has!!!

Hilary said...

Amen...God is our ultimate doctor and Healer. Only HE can say what is true or not about little Hope.
It's like my husband...the doctors diagnosed him with lupus...but his blood tests continue to get better and better. I too have to remind myself that just b/c a doctor says "So and so has_____" it doesn't mean it's true. God is our only Truth!
I continue to pray for you all and am so thankful that Hope is doing so well and not "following suit" to typical EB patients.
Blessings to you!!

Devin said...

Oh Kristy, I was so disheartened to read this about Hope. I was truly praying that this would not be her diagnosis....but I am also encouraged. Because you are RIGHT! This does not define her--only God can do that. Your faith and trust is exactly where it should be--in Christ alone--and He is holding sweet Hope, and caring for her and her needs everyday. I will of course continue praying for her, and for you.

Debbie said...

We join you in this prayer. I agree with Jennifer and Charity, she is healed, in Jesus' name. It may not have manifested yet, but it will. We are believing that for our daughter, too.

Teresa @ Grammy Girlfriend said...

Praying for Hope....

Robin said...

I found your blog from the String of Pearls website. I read and listened to your story tonight with my husband.

I want you to know that I too am praying for baby Hope. As God continues to work in this situation and your life, I will pray that you have peace and encouragement.

Your story of baby Issac touched me in many ways. First almost 11 years ago our first born was still born. That event has helped define who I am and has also helped me understand more of the heart of God the Father.

Second baby Issac went to be with Jesus on my birthday, July 20th. I will remember you and your family when I celebrate my birthday. I will rejoice because Issac is one of the little ones I will think of in the arms of Jesus along with Josiah.

My husband likes to say that heaven will be that much sweeter because we will already have a child there.

Praying tonight for you and your family.

lesserweevil said...

I am so sorry, truly, I am. I have read and watched so much about EB, before even starting to follow your blog... and I started following yours before Asher was born. Imagine my surprise - and distress - to hear that baby Hope might have EB. I will pray for you all for strength in this time, and also that Hope will astound the doctors by not blistering as they expect.
LW

Anonymous said...

I am so sorry. I do not know anything about eb or deb. Hope is a beautiful little girl. She is a daughter, she is a sister. She is a miracle of God. EB is just a part of her, it does not define her. Praying for Hope and her wonderful family.

Hugs,
Lisa

Mirna said...

I personally think all prayers were answered .... she has been healed. Continue to praise God for her healing - I would! We serve an Awesome God and sometimes this can be mind boggling. Miracles happen and we as humans sometimes find it hard to understand all. She is super gorgeous! Don't let satan steal your joy, forget the results darling: enjoy her. Hugs

Teresa said...

Seems like about now she has been healed, the biopsy was done weeks and weeks ago. Praying for you.

lauren said...

Coming out of blurking to let you know I will continue to pray for Hope - she is beautiful and perfectly formed in God's plan.

All the best.

Lauren in TX

Tracy said...

I know excatly how you feel... I had that same sense of shock when they told me Addyson had DEB. I wish you could see my little princess in person!! I think you would definently feel a sense of relief! I will continue to pray for Hope. We had our second infection this week and it was a baby one and she is almost 1 year old! Keep your chin up!! I know that she will do AMAZING!!!

Tracy

Anonymous said...

Don't let this bring you down Hope looks beautiful and will remain beautiful she is a special girl a true gift from God! You have a lot of support and many praying for your darling little girl you are a storng family from what I see you will all get thru this! We all must live each day to the fullest, so put your best foot forward and God will do the rest!

God Bless you sweet Hope XOXO

Susie (So Blessed) said...

Kristy,
As I read what the tests have shown for sweet little Hope, a favorite verse came to my mind:

so that your faith would not rest on the wisdom of men, but on the power of God.

1 Cor. 2:5

And so, I stand with you in claiming this verse for your baby daughter. While the wisdom of men is often a good and helpful thing, it is nothing in comparison to our mighty God's power and what He can do and accomplish as we keep our eyes on Him.

Also, if you get a chance, take a look at my post today on my blog (July 10). It is not anything you don't already know, but I pray that as you read it, it will encourage your heart.

Love,
Susie

Avery Tales said...

You are her Mother. You know her better than any doctor or diagnosis. Listen to the doctor's, but also follow your instincts. Lean on God when that yucky fear tries to creep in. He's good, all the time! I'll be praying for Hope.

peg said...

praying she is healed, she such a cute and healthy looking baby!!

Penny said...

I'm echoing the others, but it IS possible that between the testing and the results-- Hope was healed! She looks healthy and beautiful! God bless.

Angela said...

Bit shocked to hear the DX. I'm thinking maybe as other commenters have said...she has been healed, maybe not of EB, but of DEB or even just of the severity of it. Wow!

A dandelion popped up the other day in the midst of our clover and I thought of sweet Asher.

Praying for you guys.

Lindsay said...

I'm sure that a diagnosis must be scary. Surely there are different levels and if she is doing so well, maybe her experience with it won't be so bad as some others.
I'm praying for you.
Love Lindsay

Sherry Mc said...

Prayers in Virginia. God Bless. Sherry McCormick

Miche said...

Came over today to see how you, your family, and of course Hope were doing.

I'm sure you guys are shocked but you have a very strong faith as evidenced by your great strength during all you have been through.

Take care and keep the faith!

Amber

Anonymous said...

First, believe the report of the Lord! Second, it is great to pray for Hope's healing while asking the Lord for His will to be done. "Ask and you shall receive."

Blessings to you and your family!