Hello! I myself love reading the progress and experiences that your kids are making at different stages so I told myself that I would try try try to make more of an effort in sharing ours. So here it goes!! Seizures Smeizures… Since being put on Epilum and Clobazan Isabellas seizures have been nearly non [...]
Continue Reading →I was sifting through video and image files and randomly clicked on a date that had a few videos that I completely forgot about. On 8/17/07 (my birthday), I video taped Kendall for no particular reason. They are very short videos, but thought that it would be good for other new mothers to see her [...]
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Ava turns 5 months this week, and the time has felt very surreal – it’s gone by fast and slow. We haven’t left the house much at all in order to avoid germs, the cold weather and because Ava hates the car seat. I tell people I live in the Twilight Zone in combination with [...]
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Hi to all the parents with a special child in their lives I just wanted to take a moment to re-introduce Amariah and give you some updates. Amariah turned 12 yrs old on Oct 5th, 2011 and as of Nov she is fully potty trained and doing well. She has also as of late (maybe [...]
Continue Reading →I want to start with a big thank you to the www.wolfhirschhorn.org community. You all are amazing, and my husband and I are so excited to meet you all. Our little Elsa was born Dec. 28, 2011, full term. We went into labor on my due date (Dec. 27). Labor was smooth, with no complications. [...]
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I can’t believe our little guy is 3! Three years ago today we welcomed Dylan into the world and our lives were never the same. Becoming Dylan’s mother has changed me in ways I never thought possible. I am most definitely a better person today because I was given the gift of becoming Dylan’s mom. [...]
Continue Reading →FOR IMMEDIATE RELEASE Tuesday, February 15, 2012 Joint Statement of the Rivera Family and The Children’s Hospital of Philadelphia In response to significant public interest surrounding the Amelia Rivera story, the Rivera Family and The Children’s Hospital of Philadelphia have issued the following joint statement. Philadelphia, PA – February 15, 2012 – Over the course [...]
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I learned about this site when I read that the Rivera’s were told their daughter Amelia couldn’t have a kidney transplant. I was interested because my 32 year old daughter who has WHS also has kidney failure and may need a transplant. I care deeply about the rights of all individuals with developmental disabilities. As [...]
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Livi is 8 months old and a few first moments have happened in the past three months. Her first coldwhich lasted a little over seven weeks, with her not eating much and throwing everything that went in up. She lost 6 ounces in those seven weeks and I was a wreck. She wanted to eat but she started to associate it with throwing up. At this point her zantac stopped working and we moved on to prilosec which she threw up no matter how it was given to her. We then tried prevacid and have been doing great on that. We did not have to go to the hospital (knock on wood). We also gained back the 6 ounces and then some. She is also eating more now.
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On January 16th, Kailyn (aka: Kaylee) turned 2 years old. I will confess that it was a bittersweet day for me. While on the one hand, I could tell that she had grown significantly since last year~ developmentally, there was this feeling that she was still pretty far behind…even by Wolf Hirschhorn Syndrome standards.
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We just wanted to say hi to everyone and introduce our special little boy Teejay. Teejay was born at the end of february 2011 about 5 weeks earlier than planned and weighing in at just over 4 pounds. He spent the first 3 weeks in hospital mainly due to the fact that he would not [...]
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Well, sort of 
She can’t sit up by herself, but if we put her in sitting position she can steady herself and stay there for 5 minutes or more! Very exciting.
Sabrina is happy and healthy and has also been seizure free (touching wood) for the past 8 months. She has had her ears checked and it turns out she only has a mild hearing loss in one ear which is not a cause for any concern.
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Look what Arin has started to do…. she has started to lift her head up while on our chest and while using the Tumzee by the makers of the wingbo but only costs a quarter of what the wingbo does. She looks so cute when she does it.
Continue Reading →***A few disclaimers: This post was originally posted on our personal blog: http://www.alittlesomethingforme.com – All of the links (with the exception of the 4Paws for Ability) go back to previous posts in our personal blog.*** **We are excited to travel this road with service dogs. The literature on seizure dogs is still new, but [...]
Continue Reading →I am so exicted to share that Taylor is getting a DynaVox! We had a meeting today at the speech clinic. Taylor got to have a hands on session with the DyanVox and I can just see this bringing so much to Taylor’s life. It truely is amazing to see her learning and enjoying something [...]
Continue Reading →I wrote this post on my blog but wanted to share it on here also. I hope everyone is doing well and eating lots of good food on this Superbowl Sunday…. Dysmorphic Facial Features….. I’m sure you’re wondering what I’m talking about. Those words are the reason the NICU doctor gave us for wanting to [...]
Continue Reading →Brief Update… Almost three weeks after our initial visit, we returned to CHOP to hear the hour long presentation about kidney transplants.The presenter discussed the risks for Amelia and the donor, and although they would be scary to any parent, there were no risks that raised any red flags that Amelia should not have the [...]
Continue Reading →Hello Everyone, This is Marley, she is 10 months old and 10lbs 4oz she is the most delightful, easy going little girl, we are from Nova Scotia, Canada. Marley made her appearance into the world on April 18, 2011, weighing 5 lbs 1oz. She arrived with a planned induction due to knowing she was on [...]
Continue Reading →HI! My name Antonella, my daughter Evelina was born on August 10th 2011 and I’m new to the website and want to share my story. I’ll give the short form of it to start. Evelina has WHS with a deletion at the 15.3 4p chromosome. I was 35weeks pregnant when the doctors decided to deliver [...]
Continue Reading →Just the facts for today: We saw nephrology and Mia is dong well. We asked the important question, “How long do we have until she needs a transplant?” Response: About six months to a year. We were happy with this news! We then met with head of transplant team. It did not go as well. [...]
Continue Reading →I have asked on the list serve if any one could help with any information about kidney diseases and transplants, and although many people offered support, no one responded about actually going through a transplant. So I thought I would blog about our experiences to help others. And as usual, I am being selfish [...]
Continue Reading →hi guys thought i would just update you guys on how little gracie lou is doing.. well shes nearly 6 months old shes doing very well at feeling things and is starting to hold things, she enjoys stroking my hand when i feed her. she is so lovely! she has really started to find her [...]
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This site focuses on the children with Wolf-Hirschhorn Syndrome. What we sometimes forget about are the parents and moms that carry the load for our kids. The “Parent Profile” is a series that praises the very people that give up all they have for their child with Wolf-Hirschhorn Syndrome. This story profiles Kimberly Schultz, mother [...]
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I’ve pondered this particular topic for quite some time and I always wondered how politically correct I would be in broaching on such an article. However, it came to light today so I decided to talk about it. We have 3 little ones in the house under 6 years old, with Kendall being the middle [...]
Continue Reading →Happy 1st Birthday Peyton! What an exciting and eventful year you have had. We hope that your second year is boring compared to last year and that you continue to amaze us each day with your strength and determination to continue to grow and develop. Happy New Year everyone!
Continue Reading →As the holiday season approaches, I know that many parents struggle. The gift giving experience can be disheartening. Other children grow into new stages quicker than parents can keep up. One minute they are stacking blocks and the next minute they are playing Barbie / GI Joe kingdom. The truth of the matter is this. [...]
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