Hello everybody. I am yet to figure out how to work this website. I want to introduce myself, my name is Leonie. My 14 month old daugher Sabrina has been diagnosed with WHS. Looking for some support, hoping to find it here!
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HI Leonie and welcome to the WHS family,
My name is Kristy and my son Dylan, 19 months, also has WHS. This blog has been a great support for me. I wanted to ask, was she just diagnosed? Dylan was diagnosed about a week after birth. For me and my husband the diagnosis was very shocking. We were unaware of any problems during the pregnancy except that he looked small on the ultrasound. We have come to learn that the medical literature on WHS is very outdated and definetely only discusses the worst cases. Through this support group we have met many wonderful children that are beating the odds everyday and are proving the doctors wrong – Dylan is one of them. He is doing so much better than ever expected and we are blessed to have him in our family.
If you would like to read more about Dylan’s story please feel free to visit my blog http://www.ourlittledillpickle.blogspot.com or you can e-mail me directly @ kristyfisher79@yahoo.com
Sabrina is absolutely adorable by the way, I love her cute little smile.
🙂 Kristy
Hi Leonie,
Wow, Sabrina is really cute.
I’m Kevin and my daughter, Kendall, was diagnosed at 9 months. I moderate the site. There is a good group out here that contribute to the site and you can count on getting feedback and insight to your new adventure.
Welcome aboard. Please fill us in often!
Hi Leonie,
I’m LeeAnn and my son Brodie is only a couple months older than Sabrina, he was diagnosed at 10 mo. old. He is our only child. We get so much encouragement from this website, it is a great place to celebrate the milestones and share the victories and meet other families going through the same things. We are new to the site too. Sabrina is adorable, hope she’s doing well. You’re welcome to visit Brodie’s blog http://brodieupdates.blogspot.com/ or email me at laflanary2@yahoo.com.
-LeeAnn
Thankyou all so much for your replies. It warms my heart to see how well your little ones are doing and gives me so much hope. Sabrina was diagnosed earlier this week. I feel like I am coping well, and in a way its relieving to know that we now have an answer to all those questions and Sabrina is no longer a medical mystery! Till now, all her symptoms were put down to prematurity and her heart defect. We now know that is not the case. Im looking forward to getting to know you all and sharing in your journies, as well as sharing mine 🙂
Welcome Leonie and Sabrina,
Sabrina is adorable! I don’t have a lot of advice because my daughter is only 7 days old, but I wanted to welcome you! This blog along with other blogs out there have helped us so much already and I’m sure will continue to help. I hope it does the same for you.
~Hilary
http://iwontweargrey.blogspot.com/
Hi Leonie,
Welcome to our WHS family. We are spread around the world, but we all celebrate the milestones and support each other through the tough times.
Sabrina is just beautiful!!
I am Anna, Mum to Ryley who is nearly 9 years old (that makes me feel so old!). He was diagnosed at 2 years old.
We have a blog too: http://ablogaboutabloke-livingwithwhs.blogspot.com/.
Whereabouts in the world are you?
Lovely to meet you.
Anna
Hi Leonie,
Welcome to the family!
My daughter Amelia was diagnosed at two days old and is now two and half years old.
Sabrina is adorable and I can’t wait to see more pictures and hear all about her! .
Thankyou, all of your kiddies are absoloute cuties! Anna – I am in New Zealand. I see you are in Austraila! I have been in touch with the Australian support group and Im going to join 🙂
Hi Leonie, Sabrina has the same cute, cheeky smile as Eve and about the same amount of hair 🙂
We are in Australia as well. Hope all is going well for you, I look forward to hearing about Sabrina’s progress.
Breanna – Mum to Eve, 7 months
Leonie-Wonderful that you are going to join our support group! Our family is actually the ones who are hosting the conference next year!
We have a FB group too and there is some great conversations happening at the moment (if you are on Facebook). Our Aussie/NZ support network is pretty strong and only getting stronger thanks to places like blogs and social networking.
Looking forward to getting to know you!
Sarina is a very pretty little girl.My daughter Lexi was diagnosed when she was 2 days old. It was very shocking for me and my family.I only was told during my pregnancy that she was a low fetal weight.But she is now 3 yrs old.She had a Atrial Septal Defect,Cleft pallett,Stabismis,Feeding tube,Hearing loss,Seizures,and a Scoliosis.But for the most part she is doing much better.So don`t get discouraged.Because she will grow out of alot of her problems.My daughter did.So God Bless You,Your Precious Baby and Your Family.
Welcome to our WHS family. As you have already read, we have an amazing support network here to help you along your journey. My daughter, Kaylee, was diagnosed a little less than a week after she was born. Like many other moms, I was only told that she was growing small; my amnio had come back normal, so we never in a million years expected a diagnosis like this. Happily, the medical literature is wrong, and although the milestones are coming slower than they should, each day that Kaylee reaches a new one is a little miracle and reason to celebrate. If you ever need anything, please know you have MANY people here to support you. If you wish to learn more about my journey with Kaylee, you can find my blog at kisses4kaylee@blogspot.com. I look forward to watching Sabrina grow! xo
Hi Leonie and Sabrina. It is wonderful to meet you. I am just starting to read all about you.