Today ended up not being so quiet. I'll give more details later. This post is more like a world wide plea for anyone who cares about Daylon to pray for him. Tonight Daylon had a seizure, which lead to a CT that showed the left side of his brain is bleeding. The good news is that it is on top of his brain and not in his brain. The bad is that there is enough blood to put enough pressure to trigger seizures. He's going in for brain surgery as soon as his platelet count goes up (probably a few hours) so they can drain it. When I asked how much experience the neurosurgeon who would be preforming the surgery had with EB, the doctor asked, "what's EB?"when I told him he said,"Who cares about his skin at a time like this!?". Long story short, me and this guy got into it and he won. I just stood there crying so angry I could slug him, while he listed off the risk of different type of skin infections that could occur at the site. He really has no clue.
Please pray for Daylon. Pray that the surgery can be a success. Pray that his two "smaller" incision don't become two huge ones. Please pray for the doctors and all of the medical personnel attending them. I wish I could fly you all here to sit with Brian and I in the lobby. We'll feel you in spirit I'm sure. I'm so grateful that there are so many people who love our son. We love you.
Saturday, July 24, 2010
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34 comments:
I will sit and pray before bed. Denise, WI
PRAYING for Daylon and your family, and for the medical staff doing the surgery. Judy T.( Leah's Grandma) in Bowie, MD
All in my prayers.
Daylon and your family are in my prayers.
Sending all of our love and prayers to Daylon and his family!
We're sending up prayers in Indianapolis. May God guide the surgeons hands and rock Daylon and your family in his loving embrace.
You don't know us, but we think of you constantly (in different circumstances, that would be weird, huh?).
Please keep us updated when you can.
Oh Jennifer! I'll be praying for him! And the docs!
(That comment was from Jeanine)
Praying with all my heart - for Daylon, the doctors, for all of you!
Debbie Gwynn
Praying hard tonight for Daylon!!! In my thoughts and prayers daily!
Kara, NY
I am so sorry. My heart is breaking for you guys. May all the EB angels surround Daylon.
We love all of you- praying hard.
Courtney
Hi Jennifer...I work with Dee at Roosevelt. Rest assured that you are in my family's prayers. Daylon is making all of us better parents and better people, and we're all pulling for that little man! May God grant you all peace of mind and fervent confidence in His loving plan for you. God bless!!!
We are praying for your precious little man. May everyone who touches him be blessed with knowledge and grace. Hugs to you and Brian.
Daylon and your family are in my prayers.
Greetings from Sweden.
/Anne Moijé
Daylon is my thoughts every day. I'll be sending lots of prayers your way.
Amy
MN
Praying so hard for you all.
As I type is Jesus, I see Your sun rising. I know that You are with Daylon and his family. Thank you for being each one of them. Protect Daylon as each person touches him. Thank you for this request. sg-KS
I will praying all day for your precious son. Praying that the surgery goes well and that the surgeon will be guided by a much higher power. Hang in there, we all love your son. God Bless. Love Leah's Nana
Praying...praying...praying...
Jennifer and Brian,
Will be praying for you, Daylon and the doctors. Your family is such an inspiration to me.
Prayers for Daylong on therir way....more prayersthan usual. Be strong baby.....and mommy and daddy, too.
I am praying that Daylon makes it through this surgery with as little damage to his precious skin as possible, and that it stops the bleeding and seizures.
I just looked at all the before/after pictures. That is truly amazing!
I'm so sorry to hear this. I'm praying with all my heart for Daylon, the doctor's, as well as for all of you. May all the EB angels surround & protect Sweet precious baby Daylon.
You have done your best for him and when we do our best God does the rest. Daylon's a fighter and we are with you in prayer and thought.
Oh my heart aches for you. I am praying.
<3 Cheryl
Dear Jesus, YOU are the Great Physician and we ask that you guide the doctors hands today during all they do for Daylon. Please be with Daylon's family and comfort them Lord. In Jesus name we pray.
You don't know me but my family and I are praying for your son. I pray for him constantly throughout the day, every day.
Daylon and your entire family are in my thoughts today and always. Sending a prayer.
I have been praying for Daylon for some time now, and will send even more prayers your way.
Thinking of you - hope the surgery goes well.
Martina
My heart aches for you. Many thoughts, prayers, and healing thoughts from my family to yours. Denise, Steve, and Ryan (3 yrs old, JEB).
I will say a special little prayer for Dylan and for all of you right now.
Christy(Mother to Kaysie E.B. Dowling Meara)
I don't think anyone who has followed Daylon will ever be the same again. I believe good comes somehow from these trials. I refuse to believe otherwise. The great Physician is in charge here.
Much love and more prayers,
Cheryl
I am so sorry I wish I could help in some way... I wiSh the doctors were different. Stay strong.. Will be praying for your son
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