First of all, from everything I’m seeing and reading, I think you’re amazing. I have a 4 year old grandson who has bilateral optic nerve hypoplasia. We are trying to find a good Neurologist, possibly inLouisiana, for a second opinion. Would you have any recommendations or suggestions?
Hi Debbie!! Please forgive me for taking so long to reply! We see Dr. Shannon McGuire at Children’s Hospital in New Orleans. She is awesome! Do you live in the NOLA area?
Hi Katie,
Conner looks so familiar to me. I was at a walk in Greensboro 5-6 years ago and I believe I remember meeting you and Conner. It was for the March of Dimes. I was there walking for my granddaughter, Savannah, who was born with CHARGE syndrome. I was just wondering if it was indeed Conner. Love your blog, by the way. God bless you and your family.
hello, I just read save the waiver program, I have a couple questions ? who do I contact to help save the program and does this program assist families who may not qualify for assistance but yet struggle because they have a family to support along with a special needs child ? just little more information on the program please ??
http://dhh.louisiana.gov/index.cfm/page/283
Hi Janice, go to this link for more information on the NOW waiver. If you are in Louisiana I suggest you contact your regional office for Citizens with Developmental Disabilities. The DHH website has tons of information that should help!
I’ve been camping for 2 weeks with my family and didn’t have access to Facebook. Nice little break. Today we are driving home and I’m surfing fb and see a story that makes me pause. Dear Sibling to a child with special needs. It touched me deeply because I have one of those.
Your story grieved me, challenged me and encouraged me. I will keep you and your family in my thoughts and prayers.
My 6 year old daughter was diagnosed with stage 4 high risk neuroblastoma cancer 2 years ago. For 2 years we’ve been in and out of hospitals, clinics. We’ve traveled many times to New York City, New Jersey, Pennsylvania and Michigan for treatments. Emily has relapsed twice and is currently doing a trial drug that we hope will give us a couple more years with her. There is no cure for her.
Evelyn is 4. As I read your article it was if you were writing about her. She’s so grown up for 4. She’s had to be. She’s been raised by my best friends. It hurts me but can’t be helped so your letter greatly encouraged me. I emailed it to myself to keep it for when she gets older.
THANK YOU for writing. In your struggle and pain your letter mattered to me.
.my blessed little nest. 
Hi Katie,
First of all, from everything I’m seeing and reading, I think you’re amazing. I have a 4 year old grandson who has bilateral optic nerve hypoplasia. We are trying to find a good Neurologist, possibly inLouisiana, for a second opinion. Would you have any recommendations or suggestions?
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Hi Debbie!! Please forgive me for taking so long to reply! We see Dr. Shannon McGuire at Children’s Hospital in New Orleans. She is awesome! Do you live in the NOLA area?
LikeLike
Hi Katie,
Conner looks so familiar to me. I was at a walk in Greensboro 5-6 years ago and I believe I remember meeting you and Conner. It was for the March of Dimes. I was there walking for my granddaughter, Savannah, who was born with CHARGE syndrome. I was just wondering if it was indeed Conner. Love your blog, by the way. God bless you and your family.
LikeLike
hello, I just read save the waiver program, I have a couple questions ? who do I contact to help save the program and does this program assist families who may not qualify for assistance but yet struggle because they have a family to support along with a special needs child ? just little more information on the program please ??
LikeLike
http://dhh.louisiana.gov/index.cfm/page/283
Hi Janice, go to this link for more information on the NOW waiver. If you are in Louisiana I suggest you contact your regional office for Citizens with Developmental Disabilities. The DHH website has tons of information that should help!
LikeLike
I’ve been camping for 2 weeks with my family and didn’t have access to Facebook. Nice little break. Today we are driving home and I’m surfing fb and see a story that makes me pause. Dear Sibling to a child with special needs. It touched me deeply because I have one of those.
Your story grieved me, challenged me and encouraged me. I will keep you and your family in my thoughts and prayers.
My 6 year old daughter was diagnosed with stage 4 high risk neuroblastoma cancer 2 years ago. For 2 years we’ve been in and out of hospitals, clinics. We’ve traveled many times to New York City, New Jersey, Pennsylvania and Michigan for treatments. Emily has relapsed twice and is currently doing a trial drug that we hope will give us a couple more years with her. There is no cure for her.
Evelyn is 4. As I read your article it was if you were writing about her. She’s so grown up for 4. She’s had to be. She’s been raised by my best friends. It hurts me but can’t be helped so your letter greatly encouraged me. I emailed it to myself to keep it for when she gets older.
THANK YOU for writing. In your struggle and pain your letter mattered to me.
LikeLike