Hydrocephalus
When you
 
have no where
else to turn, there is always hope !
When you have no where else to turn, there is always Hope!
 
If you'd like to leave us a message,or your story, please do!  We'd love to hear from you! If you would like us to contact you back, please leave your e-mail address in your message so that we can. 
Showing: 1-25 of 75
JoLynn said:   November 19, 2008 12:40 pm PST
I loved reading your story, I'm in tears. My daughter was a full term baby who had a 3/4 bleed due to long labor. I was sooo angry. I cannot tell you all the things the doctors at the hospital told me she would not do. My daughter is a miracle child.. like you I never left her side! they had to kick me out. And that is why babies do so well... they know their mommies love them. She is sooo smart. She knows about 90 words! That blows my mind. I wish I lived close to you, madison and reese could be friends! She is beautiful.. I know you are very proud! Thanks for your story, makes me feel like we're not alone!

Amanda said:   November 16, 2008 5:45 pm PST
Wow.. your lil one has been through so much and she is really a blessing and miracle from God! Thank you so much for sharing your amazing journey story! It really helps a lot of others out there going through scary times. Our daughter was born at 23w4d. on July 7th, 2008. She had level 3/4 IVH resulting from birth which has now developed into hydro. She goes in this Friday for a shunt. We are also from IN (about 45 min north of Riley Hospital). Her blog is www.xanga.com/kayli_raeann. May God Continue to Bless your family!!

Katie Garner said:   November 14, 2008 8:20 pm PST
Thank you for building such a wonderufl site! It's is such a help to parents to hear it from other parents who have been in their shoes. Looks like tomorrow is Madisons one year post-op for the cranio, congratulations!

regan horne said:   November 14, 2008 1:37 pm PST
i have emailed you earlier about my daughter but i just thought id leave a message on here too. our special little girls really are a miracle. i have been always told by family that she was sent to me special because none of them could have handled this situation. my daughter came so close to having hydrocephalus, it was such a heart wrenching time for us. and i know that pain you've had to deal with from the surgery, to the tests, to the ignorant doctors that just dont seem to understand a mothers love and instinct. i loved reading about your little girl, and i wish you and her the best of luck in life and let no person tell her what she cant do....because she can do special things.

Debi Rabick said:   November 9, 2008 6:45 pm PST
Dear Madison, I've got the Ladies Bible Study group at our church all praying for you! We want you to keep growing, keep healing from the latest surgeries, and keep glorifying God with all you CAN DO! You Rock Little Madison! Many hugs and kisses and prayers, Debi

Evelyn Hartung said:   November 5, 2008 12:48 pm PST
My name is Evelyn Hartung & i'm from NJ i've been in California for 15 years now that i had a hydro removed in NJ in 1995 at Robertwood Johnson University in New Brunswick, NJ. It's a hospital & a school together. I also was in a coma for 1 week right after the car acciodent & that i died on the way to the hospital. But because i had my baby Elizabeth in the car w/me at the time of accident.

Ali T said:   October 30, 2008 2:21 pm PST
Hi Madison! I just wanted to tell you that you are such a strong girl and I'm rooting for you all the way! I am 22 and I was born with Hydro, diagnosed at a year. I've had problems with doctors who didn't know what they were doing. DON'T EVER BE AFRAID TO QUESTION THEM, YOU HEAR ME?! You have A RIGHT to know what's going on with you. You're a strong, special girl and you're going places--don't ever let anyone tell you differently! I'm thinking lots of positive thoughts for you. You have lots of people who love you. I'd love to hear back from you: alison-tunnicliff@augustana.edu. Peace and love, Ali :)

Shannon Stewart said:   October 30, 2008 12:36 pm PST
Hi Madison, I miss seeing you. I live in Muncie now and I am doing well. I am glad everything is going well with you. I loved your photo gallery. Shannon

Kate said:   October 23, 2008 4:24 pm PST
Madison is absolutely adorable. Thanks for sharing your website on the POCWH board. I had some ignorant doctors during my pregnancy with my first daughter. They told me she wouldn't live. In fact, they suggested that I abort my baby. Thank God I didn't listen. When she was born, she was completely FINE with no medical problems at all. My second daughter has hydro, is doing great, and is also the love of my life. Anyway, wishing Madison a speedy recovery.

LIZARD said:   October 23, 2008 1:54 pm PST
Hey, sweet angel baby. :) Mommy said you had another surgery, and I heard you're home now. I am so glad to hear you're getting better! I had a big interview for a job yesterday and wanted to let you know I was thinking of you. You are such a courageous little girl, and this old shunted lady looks up to you! Thank you for being so brave and for being an example to me on how to live my life. Big hugs and kisses! "Auntie" LIZARD :)

Alida said:   October 21, 2008 6:17 pm PST
Just wanted to let you know that I am praying for Madison to have a quick recovery from her surgery. Are you all still doing Hydro conference in S. Carolina at the end of the month? Alida

Ronda Roaderick said:   October 9, 2008 10:11 am PST
Madison is adorable. My Grandson,Tristan is 9 yrs. old now. He was diagnosed when he was approx. 4 months old. They say that he has the rarest form. He has endured 8 surgeries. I never knew what Hydrocephlus was ,until he was diagnosed. How was he diagnosed? My Daughter noticed that his little head was just looking too big to her. SHE BROUGHT IT TO THE DOCTOR"S ATTENTION...He said.. that she was right after he measured Tristan's head. He was fitted with a Pediatric Shunt, which wasn't enough to do the job. At 6 month, he had a adult shunt. He produces 3 times the amount of fluid thn normal. He has been surgery free for about 6 yrs. now. Thank You for sharing Madison's story! GOD BLESS YOU ALL!

Cathy Wahler said:   September 21, 2008 5:05 pm PST
I was horrified to read about the insensitive and ignorant "so-called" doctors said to you. Praise God that He is in control and not some person with diplomas and lots of letters after his name. My "petite girl" (third grandbaby) was born three months early, weighing 1 lb, 15 oz. Aside from PDA, a whole in her heart and fluid in her lungs, she had a Stage IV brain bleed. The doctors have said that she will have moderate to severe brain damage, but I am thankful that God is in charge and not mere, ignorant men. Madison is quite an inspiration to us. I pray that the Lord will continue to bless you - and am so very glad you had the faith to believe in Madison. She certainly does rock! God bless, Nema - (Grandmother of three), aka Cathy from California

Candace said:   August 31, 2008 11:25 am PST
She's a beautiful little angel. A child of God. I don't know what your going through but you're a great mother to deal with the trails and struggles that come with a sick child.

Amie Crouse said:   August 28, 2008 6:42 am PST
I just sent you a message about the Hydro conference and then stopped here to visit your site.....now, I see you are in IN as well! I see Dr. Boaz's partner, Dr. Jodi Smith!!! I can't believe you are so close! I would love to meet little Madison! Our story is at www.crousehouse.net. I can't wait to hear from you! Amie Crouse Mommy to Sam and Molly Sam Dx: Severe Hydrocephalus

Melissa Standifer said:   August 26, 2008 8:26 pm PST
Madison is such a beautiful little girl. She's gorgeous. And is she ever smart. When I heard her say my name, it made me tear up. She's a darling little girl and you all have done a wonderful job at raising her. She's such a strong little girl. And even though I hardly know her, I love her to death. I would love to just pick her up and hug her and kiss her. She's a wonderful kid and so happy. She makes me smile. God Bless you guys. All my love-Melissa XOXO

Kristen said:   August 26, 2008 7:16 pm PST
Madison is so beautiful!! I could look at her pictures all day. My little sister's name is Madison too. It's a beautiful name. I am 27 years old and I have a 5 1/2 month old daughter that was born with Hydrocephalus. It was diagnosed when I was 20 weeks pregnant. She was born at 37 1/2 weeks with a head circumference of 48 cm. She's had a total of 6 surgeries already. Most of which has been shunt revisions. Finally this current shunt is working great *knock on wood*. I keep a blog on my beautiful angel. That link is: caymancindy.blogspot.com Thanks so much for creating this website on your amazing Madison. I have enjoyed reading about her and seeing her pictures. It has brought me so much peace. It's so scary to have so many unknowns with Hydrocephalus. Take care and God bless you!!

Ashley Besaw said:   August 26, 2008 8:01 am PST
im sure i wrote on here be4, but everytime i see your pic and hear your story, it fills my heart with love and my eyes filled with tears of joy!!!! My son Zayvier turned one on July 11th.. and i was told he was going to die when i found out back when i was prego... with the all the help of specialest and people like you, who are willing to share your story and experiences, it makes things sooo much easier to accept.. thank you sooooo much!!! i wish i had time to make a website, i just dont have time!!! Madison you are sooo beautiful and i wish the best for you... and 2 Madison's mom.. you are one strong mom!!! you are one of the best moms out there and there she be an award for people like us!!!! thanks again!!!

Alexis Aguilar said:   August 25, 2008 5:08 pm PST
Madison you are a beautiful bright and strong little girl.Kelly,i have hydro and im 23 yrs old.I understand exactly everything you are going through with Madison.It reminds me of some of the stories my parents have shared with me and their journey through my trials.Having hydro isnt easy or fun but it has saved my life.Im blessed to know that i can share my story with others just like me wheather they are younger or older.Its great to know there are others out there like me who understand.I say to you hang in there and keep being strong for Maddie.

Tiffany Tilley said:   August 24, 2008 7:37 pm PST
I too have a VP shunt but only need it because of a brain injury caused by a car accident. I just want to thank you for putting this site up!!!

Madisons oldest sister said:   August 22, 2008 10:47 pm PST
MADISON OH MADISON... I JUST WANT YOU TO KNOW THAT I LOVE YOU MORE THAN YOU WILL EVER KNOW. YOU HAVE BEEN THROUGH AN OUTRAGEOUS AMOUNT OF THINGS AND CAME THROUGH EACH ONE WITH FLYING COLORS AND YOUR FAMILY IS PROUD OF YOU FOR BEING SUCH A STRONG BABY GIRL. WE COULD NOT IMAGINE LIFE WITHOUT YOU!!! MADISON I LOVE YOU!!

kelley howald(juju) said:   August 13, 2008 8:38 am PST
u rock madison i luv u with all my heart

mugu said:   August 5, 2008 12:03 pm PST
ok i agree

Misty Moore said:   July 30, 2008 9:48 am PST
wow! those eyes and to read and see what she has gone through! she is what life is all about! i cried when i read what really went on! and kelley you are an amazing mother! maddison is an amazing little girl!

Darcie;;does the robot (your awesome cousin x] ) said:   July 15, 2008 8:19 pm PST
Madison, You are my hero.

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