Comments for wolfhirschhorn.org

Comment on Introducing Elsa by Kate Ryan

Kate Ryan — Wed, 22 Feb 2012 23:07:43 +0000

What a special little girl. She continues to amaze me. As always, thoughts and prayers being sent your way. Thank you for sharing.

Comment on Introducing Elsa by Carissa

Carissa — Wed, 22 Feb 2012 21:39:13 +0000

Elsa is a precious one! And also very impressive, holding her head up so high. My little Ava isn’t doing that yet and she’s exactly 3 months older than Elsa. You’re right, it is rough at first, but it sounds like you’re a great mommy and your daughter is lucky to have you! Welcome.

Comment on Introducing Elsa by Anitra

Anitra — Wed, 22 Feb 2012 18:58:40 +0000

Thank you all for the support, comments and prayers!! So excited to get to know you and your beautiful children!

Comment on Look what Arin can do….. by Anitra

Anitra — Wed, 22 Feb 2012 18:55:59 +0000

Hope the birthday plans are going well, much to celebrate!!

Comment on Dylan is 3!!! by Anitra

Anitra — Wed, 22 Feb 2012 18:49:02 +0000

Loved reading all of Dylan’s accomplishments. Way to go Dylan!! And happy birthday too! M.O.V.E. sounds like a great program – will check back to see how it goes!

Comment on Dylan is 3!!! by Leonie

Leonie — Wed, 22 Feb 2012 06:10:31 +0000

Happy birthday Dylan!! Awesome update, so glad to hear all that amazing progress

Comment on Introducing Elsa by KevinO

KevinO — Wed, 22 Feb 2012 04:20:08 +0000

Anitra- it’s encouraging to hear your wonderful story about Elsa and the amazing outlook that you guys have for her. We can’t wait to meet her! She is adorable.

Comment on Introducing Elsa by Donna Leuzzi

Donna Leuzzi — Wed, 22 Feb 2012 02:12:08 +0000

What a beautiful little girl. My grandaughter was born on Jan 26, 2012. She was a C-Section at 37 weeks and weighed in at 4lbs 10oz. I feel you pain as my daughter is dealing with the same issue. Elsa is a doll and I will pray for her and your family!

Comment on Brick Walls by Mary E. Ulrich

Mary E. Ulrich — Wed, 22 Feb 2012 01:05:36 +0000

I absolutely love the line: “I have been warned about you.”

Parents everywhere salute you. God Bless.

Comment on Introducing Elsa by Heather

Heather — Tue, 21 Feb 2012 23:54:51 +0000

What a beautiful post. Thank you for it, especially the last paragraph! I feel the same way. Our little one is 8 months. Breastfeeding such tiny babies in the first months is brutal, but hang with it! She’ll get better and better at it. It just takes time.

Comment on Introducing Elsa by Brianna

Brianna — Tue, 21 Feb 2012 23:25:31 +0000

Welcome to the WHS family. My little one is Arin and she still amazes me everyday.I hope to meet you at the 4P- conference in Indianapolis this July. Please continue to post on Elsa. I am on Facebook: Brianna Horney-Hauck if you are on there and you can email me at briannahauck@yahoo.com. COngrats on your cutie she is so precious.

Comment on Introducing Elsa by Kristy

Kristy — Tue, 21 Feb 2012 22:51:10 +0000

Hello Elsa and family and welcome to the WHS family! My name is Kristy, mommy to Dylan (turned 3 yrs yesterday), and I wanted to say the Elsa is simply beautiful. It sounds like she is doing very well and believe me she will continue to amaze you everyday. I know the beginning can be rough but happiness and smiles will be there too. I look forward to reading more about Elsa’s progress and following your journey.:)

Comment on Introducing Elsa by Betsy Callaghan

Betsy Callaghan — Tue, 21 Feb 2012 20:13:02 +0000

I may be a little biased (as Elsa’s auntie), but I think Elsa is an absolute dream! We feel so blessed that she is in our lives. She has the best mommy and daddy ever. I know she will continue to exceed all expectations. Love, Aunt Betsy

Comment on Thank you! by Lara Seay

Lara Seay — Tue, 21 Feb 2012 18:03:56 +0000

i don’t know if you’ll even read this comment, but reading your story made me feel compelled to tell you my own. in 1999, when i was 20 years old i was waiting for my second kidney transplant at Virginia Commonwealth University,(a large teaching hospital in Richmond, VA considered to be top notch) where i had been a patient since i was 11 and had received my first kidney transplant at age 14. My mother had been my first donor and now my father was a match. During a meeting with the transplant coordinator, i expressed some anxiety and fear about support after the transplant. From experience after my previous transplant, i knew that i’d have to return to the transplant center everyday even after i’d been discharged from the hospital although i wouldn’t be able to drive. as well as pick up meds from the pharmacy and remember to take them, 5-6 times a day while doped up on pain medication , i’d been a child back then and my family had taken care of me. it was a completely appropriate concern but the transplant coordinator, instead of empathising and looking for a solution, told me in a very condescending and snotty tone ” i’m hearing you say that mommy did this for me and gramma did that for me, and if you can’t take of yourself then we don’t have to do this for you” She actually said that “we don”t have to do this for you” as if it were her kidney to give me or like it was a favor, not something that my private insuranse that i had to skip college to work in a call center in order to have, was paying their very large bill for. I have never been as angry as i was in that moment, and i put up with alot at that transplant center. And the thing is, i was a prime candidate for transplant. i was young and healthy with no diseases other than kidney failure. The original disease that attacked my native kidneys had never returned and i was in good shape. My father was a good match. And this women was talking about keeping me from my transplant instead of just arranging for a home health care nurse for after my discharge. I left that transplant center that day and i never went back. I found a smaller community hospital with a transplant center that accepted me. Of course at that point i was so sick i had to start hemodialysis, which was miserable, and it took some time to go through all the steps again at the new place. The center there treated me with respect and i love and trust my doctor, something i had never experienced before. We are a team, it’s not a dictatorship. I’m 33 yrs old now, i;ve had my kidney for 13 years this year, which is 5 more than at VCU. I went to nursing school after my transplant, and now i’ve been a pediatric RN for 8 years. i do everything i can to protect my patients from doctors and nurses like the transplant coordinator that day. People who think they know everything because they have learned about a disease but know nothing at all about living with it, or caring and loving a child with it. In my time as a nurse i’ve encounter many kind and loving medical professionals, but unfortunately in my time as a patient i’ve also encountered many callous and unkind ones too. They develop an inflated sense of their own importance and forget that they are there to help people and improve there quality of life. I’ll be honest, kidney transplant is not a cure, it’s a treatment and sometimes it’s hard. It requires diligence, but so does dialysis and it is the donors kidney to give and their (and your)decision to make. Your daughter is fortunate to have you as an advocate and i wish you luck

Comment on Dylan is 3!!! by crivera75

crivera75 — Tue, 21 Feb 2012 17:21:31 +0000

Happy Birthday Dylan! You have made accomplished so much! Way to go! You are an inspiration to all WHS children!

Comment on Top 10 Benefits of having a Wolf-Hirschhorn Child by Renee

Renee — Tue, 21 Feb 2012 08:36:40 +0000

So true! We have always said these kind of things too! And I have always said that with Olivia I don’t have to worry about teenage pregnancy, drug abuse, Texting and driving, or going to jail!!

Comment on Brick Walls by Nancy

Nancy — Tue, 21 Feb 2012 01:21:03 +0000

To Hattie (and others who say doctors make these choices often): Yes, valid point – people are denied transplants for health, age, etc. But according to this story, this doctor said the denial was for “mental retardation” which leads to a poor “quality of life”, plus something about the child not being able to take medicine by herself. IF the reason is prior health conditions, poor reactions to surgery, poor prognosis after surgery, fine. BUT STICK TO THAT. If this were another child of the same age with all the same health problems and history but no mental disability, would the answer be the same? If so, say so, and don’t highlight “irrelevant” information in pink highlighter. I know several people with Down syndrome who have a “quality of life” (happiness, accomplishment, positive effect on others) MUCH higher than 90% of the people I know with “typical intelligence”.
To someone who suggests libel or slander — Look that up, please. Simply repeating an occurrence that damages a reputation is not libel or slander. TRUTH is the ultimate and definitive defense to either of those accusations.

Comment on Top 10 Benefits of having a Wolf-Hirschhorn Child by Lisa

Lisa — Mon, 20 Feb 2012 15:14:21 +0000

I LOVE THIS!! FITS TALON PERFECT <3

Comment on Brick Walls by caroline

caroline — Mon, 20 Feb 2012 04:56:21 +0000

I work with people who have mental health issues.They are human just like us so called normal folks.With the proper health care they can live long and fulfilling lives.If the family is not asking to be put on the waiting list why not do the transplant?

Comment on Brick Walls by Michelle

Michelle — Sat, 18 Feb 2012 05:20:59 +0000

Coming from a parent who has had to endure the unexpected loss of our two year old son and subsequently donated his organs I am very saddened by this story. This child did not choose to be born like this and you, her parents have had the challenges of raising a child with special needs already. You know what it’s like to provide daily medical care to your child. Regardless of Amelia’s mental capacity or her potential to give back to society she is someones child and she matters to those that love her. Letting her die by denying her a transplant just doesn’t seem right to me. For us it did not matter who our son’s organs went to we just knew that other families were not going through that heartbreak that we were at that time. I hope they give this little girl a chance at a healthier life.