(This happens to be one of my favorite pictures of Hope. She is practicing her Karate moves to keep up with her brothers I am certain.It always makes me smile.)
Quick Update Here:
I am overwhelmed with gratitude by the number of you who have reached out to me. I have been having such a tough time battling fear and doubt and it is so uplifting to know that so many of you are storming the gates for us. We are trying hard to live in the moment. Our days with Hope are so filled with love and joy! The boys are the best big brothers, and she is such a happy little girl. The only part of the day that I truly dread is still the time in the evening when we care for Hope's wounds. Bandage changes have been better though. We are learning more about wound care and supplies ad she is healing well. No new blisters have developed, but a couple of sore spots have appeared on her leg from scratching herself. We basically have to for now keep her in sleepers with hand mitts so she can't scratch herself and they aren't so easy to find.
We have another appointment in Pittsburgh tomorrow to get her stitch out. They may have preliminary reports or may not for another week or 2. Please pray for all of us as we will be spending another day away from the boys, much time in the car, which Hope despises, and is still uncomfortable for me. Please also pray for our hearts and for the doctors as well as for Hope. She is so tiny and helpless and it breaks my heart to see her hurt.
40 comments:
I have never left a note before but I have been praying for you :) When I had my boys the would always scratch their face so we used socks on their hands and it worked good. So if you need a alternative to jammies with hand covers you might want to give that a try :) I will keep lifting you up in prayer! Enjoy those boys and that sweet baby girl! (((HUGS)))
I am glad things are going so well. Walmart sells Gerber newborn (0-3?)onesies with hand mitts built in. -KD
I hope your appointment goes well. Not matter what her biopsy results are, either tomorrow or in 2 weeks, everyone with EB is different and she will become an amazing person no matter what type she has! That and you will have a HUGE EB community there for you for whatever you need (if she does indeed has EB). Have safe travels.
We are praying! We haven't had the same experiences, but I know the fear of "waiting for the other shoe to drop, waiting for the next crisis, waiting for the next wave of bad news" My son has had many health issues and I constantly found myself panicking and wondering what would happen next. And then each time I felt that nagging fear, God started speaking to my heart, giving me His strength to walk through whatever the next thing might be, I pray for this peace, and strength for you. I also pray that as I struggled to just live in the moment with my next child, but kept being fearful that you too will wake up with a heart overflowing with joy, and that Hope truly will bring peace and joy to your heart. God bless! You are in my prayers!!!
Praying for you, and especially praying for your specifics tomorrow! I know the trip won't be easy but hopefully the doctors will be able to provide you with some words of peace (through the Lord of course!)... Praising God for your 5th sweet miracle- that precious girl that fills us ALL with hope!
Praying for peace...
Praying that tomorrow goes well!
still praying here...
I am praying!!!
YAYYY, my evening is complete... a pic of Hope! Sounds like she is doing better, and hopefully you are too. I know the tone of voice is not heard in a blog entry, but it "sounds" like you are better. Take care and thanks for the oh-so adorable pic of your adorable girl.
Praying for your appointment today and for safe travels. God will continue to bless your family.
Good morning!
I was wondering if I could send you some baby sleepers with the little hand mitts attached since you mentioned they've been hard to find. Do you like Carters? or is there another special brand(or material) that is better for Hope's skin? Is there anything I should avoid while I'm out looking? Collars? Zippers? Something that might aggravate you or Hope? Please feel free to list your preferences! If you can leave me an address to ship them to, I'd be happy to send some right away.
Hope today is full of safe traveling and good news!
shelbydarrah03@hotmail.com
Oops. Not sure why my post was listed as Anonymous? :)
You were one of my first prayers today. Remember Who is in control.
Praying unceasingly for precious Hope. I never could have imagined caring so much for a family that I don't know. I will continue to pray for your heart and peace as well as physical healing. God bless your family! Hope will be doing real karate chops before you know it.
My dear friend, although we have never met, we have so much in common that I feel as though I've known you forever. I too have two beautiful sons who live with my Jesus; Baby Chris who went to heaven at age 11 months due to Spinal Muscular Atrophy and Nathan who we lost at age 20 in a terrible, firey automobile accident. My heart will never heal as I miss them daily and I know the fear I felt with the birth of my younger children and now, everytime one of my children gets behind the wheel. Once you've lost a child, you lose your innocence and in someways you never feel safe but God is ALWAYS there-holding you up when you no longer have the strength to stand alone. I know. I also know that God produces miracles each day. My son Cory was originally diagnosed as having SMA. He had many surgeries while in the NICU including a shunt for treatment of hydracephalus. They sent him home with dire prognosis...he would be mentally retarded, most likely blind and deaf, and we were told to never expect him to sit or walk. He is now 15 years old and perfect!!! As I knelt at the altar and prayed for his healing, so many years ago, I felt the Holy Spirit flow through me and that day he began to heal. God gave me a miracle and I truly believe that He has given you one too...her name is Hope.
Praying for you daily. Susan Miller
Still praying Kristy. She is so adorable, what a great picture!
Love you,
Kim
We use sock on my boys hands so that they couldn't scratch themselves.
Praying for you
I just HEART checking on sweet baby Hope everyday! She is gorgeous! I cannot even imagine the fear you must feel, but I have been praying for peace for you and your family since I came across your blog. I pray you get good news at the dr and that you are able to take care of yourself a little bit. I had a c-section as well and I know that part isn't easy! WalMart has some really soft, comfy gowns that have hand mitts attached that just roll over their hands. Maybe that will help you a little bit.
I know the Father has a special grace for you right now, and that He is walking so closely to you (like always), but I pray that He reveals Himself in a more powerful way!!
Sorry this wasn't very inspirational, my children are leaping from furniture and i'm kinda distracted! But Praying for you!!! :)
I have been checking your blog for a while and I think of you often. Hope is asolutely beautiful, and you are in my prayers.
Hi...we have been following your site for a few weeks. We are lifting your family up in prayer. Let's say an "AMEN" for no new blisters. As a mom and nurse I suggest that you trim her nails every few days (babys nails grow fast)keeping her nails really short will help alot. When our son was a newborn they sold cloth mittens that you could put on their hands so that they did not scratch themselves. Give that adorable little one a kiss and hug from us.
Love...the Carter's in Georgia
www.caringbridge.org/visit/mackensiegracecarter
Your Hope remains in my prayers. She already has lived up to the name you gave her.
Praying for you all!!
Congrats!!! She is just beautiful! You have been in my thoughts and prayers. I am so glad you and Hope are doing well. Praying for your appointment.
I have been following your blog but never have left a comment. Today I am writing you a quick note to let you know that I am sending prayers to you, your family and of course beautiful HOPE!! May you be comforted in knowing that HOPE is perfect in every way and that no matter what if any health concerns she has you will walk the path that GOD has intended for you.......and not only that, you will walk with your head held high and face each day as it comes!!
Hope is just beautiful!!! I pray that things went well with the doctors appt today and that the results will be back SOON.
Love in Christ,
Cole’s (Caring Openly, Loving Eternally) prayer team
www.colesfoundation.com
Sandy Daron
Praying for good news and uplifted spirits...also Baby Gap has some really soft sleepers with mits. They are about $15 each, but my favorite by far. My 6 month old still sleeps in hers and has room to grow, so she will have the mits for awhile if needed if you find these.
She is precious...am I the only one that think she looks like Ben?
She is beautiful. Thinking of you often.
God has richly blessed you! Know that I am praying that God will give you the strength you need tomorrow and that you will get good news! God bless you all!
C.O.L.E. (Caring Openly, Loving Eternally) Prayer Team
www.colesfoundation.com
She is beautiful...praying for you.
We are sending prayers. I love the picture too!
COLE Prayer Team - www.colesfoundation.com
www.caringbridge.org/visit/rileycook
Hugs of love, Andrea
Hi there...I just wanted to run over and say that I mentioned you, and gave you an award on my blog:) I have been really blessed by your story!
http://mama4real.blogspot.com/2009/06/and-bloggy-award-goes-to.html
Sending prayers!
C.O.L.E. Prayer Team
www.colesfoundation.com
Brian's mom 11.13.1985~01.10.1990
Forever my "bestest" boy
Thinking of you guys always - Hope is absolutely beautiful. Continue to live in the moment, even though I know it can be hard to do at times! But it is all we can do, right :)
Hugs and Love,
Stephanie
Thinking of you guys always - Hope is absolutely beautiful. Continue to live in the moment, even though I know it can be hard to do at times! But it is all we can do, right :)
Hugs and Love,
Stephanie
The baby is just a sweetie!! I had never heard of EB until a couple months ago on a blog I follow
http://patriceandmattwilliams.blogspot.com/
I thought maybe reading her blog could help you with ideas/helps dealing with this.
She is so beautiful! She looks like little Ben to me! So precious!
I am praying for you all!! Blessings!
Obviously I do not know you personally, but she looks like Ben according to the pics. How fun!
Praying for sweet Hope, waiting anxiously for an update.
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