Prayer request for Brayden:
"Please pray that his counts quickly rebound and come back up. We're praying he doesn't need the transfusion for several weeks until we are back in Little Rock. We're praying no fevers or secondary infections show up and he stays healthy enough to make it without incident to the next round of treatment. Thank you all again for everything."
I am still having trouble loading Hope's blog, and now also Jaxson's blog. Can someone let me know if there are any urgent needs? Thank you!
Keep praying for Noah E. as he continues to battle an infection in his central line.
Evan might be able to go home tomorrow; pray!!!
URGENT: Avery is very sick; she is still retaining lots of fluid and is not urinating. She is having a procedure done today to help with this. Please pray for this little girl!
Update on the Turner family:
"Trenton had his EEG & MRI Tuesday. We do not know the results yet but he is scheduled for a follow up with the neurologist next Friday the 17th. We will know more then. He made it just fine through the MRI and had NO seizures in the EEG which is a good sign! However, he did have a seizure today but this is the first one in 13 days. Keep praying---it's working!"
Update on Stella:
"Thank you all for prayers for my baby Stella. We just got home from the hospital and her surgery went fine and she came out of anesthesia very easily. She never even cried.It was harder on me than on her! Thank you again for the prayers - I appreciate it so much.
Stacey"
NEW REQUESTS:
This request was left as an anonymous comment on Friday:
"My son is friends with this young man and is devistated over the current events. This young man was involved in a horrific crash that killed his father. He does not know of his dad's passing yet due to his own injuries. I am hoping we can get as many people as possible to pray for this young man and his family. They truly need all the prayers they can get. Jack is a wonderful young man!"
This is Jack's website; let's pray!
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Just checked Jaxson and Hope's blog... All seems to be well at this point though they did receive the official diagnosis for Hope and the news was not good. I don't know what browser you are using, but if you are using "Explorer" then you should update it, there was a new update a little bit ago and blogspot is defiantly running on the new update. You can also download "FireFox" and shouldn't have any more issues. Good luck, and thank you for all you do!
ReplyDelete"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." - Kristi (hope it's okay for me to post that)
ReplyDeleteAlso, she is asking for prayer as Hopes dx is starting to get to her. Also, Isaac's birthday is coming next week and she is struggling with that. She's also looking for insight on how to most effectively pray for Hope.
Hope's family definitely needs prayers. Discouragement is setting in as they finally got a diagnosis back from their dermatologist. Here is a quote from the blog:
ReplyDelete"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."
I have had no problems looking at their blog from my computer, so I don't think it is a problem with their blog.
I'd like to ask for urgent prayer for the Monk family. (It's actually in Guatemala, not Honduras) When the case came up Friday, the judge was prepared to release the case, but the orphanage director filed a petition to have the judge excused from the case. If this petition is not thrown out, this issue will go back into a whole new swirl of legal red tape, and she will remain stuck in this orphanage. THE ORPHANAGE DIRECTOR RECEIVES $500 DOLLARS A MONTH FOR HANNAH'S CARE from the Monk family. She is not in a hurry to release the children in her care. They need prayer immediately for justice. We must pray that her petition is thrown out and the same judge keeps the case and signs quickly. This has been going on for over two years now.
ReplyDeletehttp://marynshope.blogspot.com/
ReplyDeleteHope has Dystrophic Epidermolysis Bullosa but currently does not have any blisters and is nursing well. The website seems to be having issues and may be due to not being compatible with recent updates to Internet Explorer.
ReplyDeleteThis is a quote from Jaxson's site:
ReplyDeleteJaxsons hemo doc emailed me back and said he should hear from Boston anytime because they had him on their conference schedule for Wednsday. Now my stomach is in knots. On one hand they might say come out, we can fix this. On the other they might say, sorry, we can't fix this. Ugh, I hate being in limbo. So I might need some serious advice soon. I don't know how risky it is, how do I decide what to do for him?
This post was on Friday July 10th, 2009.