Praise God, Hope is 6 weeks old today. She is still doing well. No blisters, just a couple of marks on her skin from scratching herself or us scratching her accidentally. They are tiny and minor, they don't need any special care and heal within a few days. Please keep up the prayers. We know God is at work in her and will do mighty things with her life. We are praying for her healing and for God to be glorified in her story. I will try to post pictures this evening, she is getting so big and is as beautiful as ever. Her brothers are still enjoying her though for Luke the novelty has kind of worn off and he is anxious to do "big kid" things like fishing with daddy.
Hope smiled this week for the first time in response to me (I think). She is also starting to make cooing noises and is so alert. She is a great sleeper. She loves to be held ALL the time and still despises the car seat. We are hoping to take the kids this evening to Pymatuning to feed the fish and to Presque Isle tomorrow for Isaac's birthday. I will be sure to take photos and share some of our summer memories with you all! We are so blessed to have so many praying for us!
PS- I have read and continue to read Jonah Williams' blog. He is an amazing little guy! Thank you (literally hundreds of you) for emailing and commenting for me to stop by their blog!
As for information and advice, I welcome any information anyone has about EB as I am voraciously trying to learn as much as I can so I can be sure Hope gets the best care possible while we continue to pray for her healing. I know God has it all in control, and I am daily just trying to hand it over to Him each day because the fear and worry will consume me if I don't. For today, Hope is doing so great! She is a beauty and the light of our lives! We are so thankful to the Lord for blessing us with her!
Thank you again for supporting us. It lifts my spirits daily to come here and receive the encouragement you all pour out so generously. Words just cannot do justice to the gratitude I feel. Thank you! We love you!
9 comments:
Kristy, feel free to email me to ask any thing about EB! I have been asked everything under the sun; no question is too personal!
I am glad Hope continues to do well.
The EB Organization DebRA sends out a "new baby basket' full of goodies! If you haven't gotten one yet and would like one, just email me your address and I can passing it along to the person who puts them together and mails them out as I know her personally!
Hi, you don't know me but I have a very good friend with a little boy with Dominant Dystrophic EB and he is doing very ,very well. He will be 2 in August and rarely has blisters. Hopefully she will pop on soon to say hello, Her name is Jenny.
Hello! I've been praying for your sweet baby girl and your family for a while now. I wanted to let you know about a segment I heard on the news last night that brought you all to my mind. It's a natural treatment for EB. http://www.myfoxphoenix.com/dpp/news/only_on_fox/power_of_honey_07_12_2009
Still continuing to pray!
Lindsey
Here is another link for a caring bridge site of a little boy with EB that I follow:
http://www.caringbridge.org/visit/keric
maybe that will be of help to you too:)
First, I am SO thankful Hope is doing so well. I also read Jonah's blog.
In your previous post, you talk about struggling with knowing what to pray. Continue to ask the Holy Spirit to guide you, but I don't doubt for one second God expects you NOT to ask for her healing. Remember the lady that came to Jesus and asked for him to heal her daughter (actually deliver her from demons) and He told her she would be healed because of her mother's faith. And the lady with the blood disorder that simply touched the hem of his robe. She was healed because of her faith.
My daughter also had a blood disorder for years, treatable, but not curable. God delivered her after years of sticks, hospitalizations, IVs. Do I believe he heals EVERY one EVERY time we ask? NO! We don't know the big picture, nor do we know what would bring Him more glory. But do I believe he wants us to ask in faith? YES! Even if his answer is to heal them in Heaven. He says we have not because we ask not--- so we are supposed to ask. However, our job is not only to ask, but to accept His answer whatever it is. That is faith, isn't it? Trusting Him no matter what--- just like you did through the loss of your sons.
Keep praying--- He IS listening!
God bless.
We love you too!!
I see someone left a link to Keric's website, do check it out as Keric has had a bone marrow transplant that is doing wonders for him and several other EB kids. Even if Hope's EB degenerates, there are certainly options and treatments that will only improve in the future. Not only that but Keric is a happy little guy enjoying life, there's no reason Hope won't be the same.
Kristy-
Precious friend, you have been on my mind through this weekend and the past few days. I am just seeing Hope's diagnosis and can't imagine how you feel- maybe relieved to know that there is a "diagnosis" of sorts, but nothing relieving comes from a diagnosis such as that. I want to say I'm so sorry for you going through this, and yet Hope is your love, your life, with or without it. I guess words can't really explain what I want to say, just know that I am thinking constantly of you guys and praying.
And today, being Issac's birthday... Happy 4 years sweet boy! I know this day holds so much for you since this is where life changed instantly. I know you would have never imagined that this is where you would be 4 years later and yet we know that God knew. There are so many questions in that, and still so much peace in knowing that we aren't in control.
I love you and pray that you have a beautiful day celebrating your sweet second baby's birthday. Praising God for you!
Kenzie
Hi-I am Lisa, I have been following for a while and just wanted to leave you a comment! Hope is beautiful! She's just a smidge younger then our Charity! And her pictures make me smile! God is doing something amazing, thank you for keeping us posted on her health! May His will be done in your lives! You have an amazing testimony, thank you for sharing! We live on the other side of the appalachaines from you :-) Feel free to stop by our site and check it out, you can leave a comment even if you don't have a screen name (i think at least)! Blessings-Lisa
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