Madison’s Halloween 2017 and 2 years update!
Madison turned 2 years on July 19th 2017 Today we are overwhelmed with joy to see how far Madison has come. She has met or exceeded most of her goals that were set regarding her weight and height during her one year wellness check. Madison’s Growth: We are so proud of her as she […]
Continue Reading →Halloween Event 2017
It’s that time again, folks! Halloween is around the corner. And that means we’re kicking off our annual Halloween costume event. Every year, when the leaves begin to fall, and Oct. 31 draws near, our kiddos don their Halloween best and share their awesome costumes with us. It’s a tradition at Wolfhirschhorn.org. You post a […]
Continue Reading →Connecting Our Families
Wolfhirschhorn.org recently had the opportunity to connect the parents of a baby with WHS to a family with an older child with WHS. That’s because in addition to sharing stories about our kids, Wolfhirschhorn.org also maintains a database that enables us to make these important relationship matches. If it’s been a while since you’ve updated […]
Continue Reading →Sister Love
Our younger two daughters (ages 4 and 2) are often all over Elsa. It can be pretty cringe-worthy. They rub her cheeks and pat her head. They hold her hand… then squeeze it way too tight. They literally hug (choke) her with love. All day. Everyday. If they are unattended with her, things can go a […]
Continue Reading →Swing Time: Elsa’s fave vacation spot
When packing for vacation, and maximizing the backend our van, it can be hard to know what to bring. Beyond the essentials, my husband and I always hash out what positioning equipment will give our daughter Elsa the most comfort, access and independence, given the unique environmental factors of our destination. For our weeklong vacation earlier this month, […]
Continue Reading →Paige turned 2!
Hi Everyone, Well, I’m a little late on this post as Paige turned two on April 27. What can I say? I’m on special needs time! (Always running late) Paige is now approaching 27 months, and while her accomplished milestones list is short, she is actually doing very well. Her health has been exceptionally good, […]
Continue Reading →Living in Lockstep
Moms, dads, grandparents, caregivers – how are your backs holding up? Our Elsa isn’t walking yet, so that means lots of lifting. As a result, our backs often are aching and in need of stretching and TLC. Elsa is 5 years old and 36 pounds. A great size. A healthy size. No complaints there whatsoever. […]
Continue Reading →Three Girls in a Swing
Elsa was swinging so happily in the new therapy swing at our neighborhood park. It must have looked like the place to be. “Can I get in there?” my #2 asks. “Um, I guess we could try that,” I say. I squeeze two sets of little buns side-by-side in the green seat. It’ll work. “Me […]
Continue Reading →Bedtime Gear Essentials
What does bedtime look like for you? Here’s a little glimpse of our bedtime set up for Elsa. I like to think she seems pretty happy in there, despite all the gear and gadgets. She sleeps fairly well. (Although lately she seems to be waking up between 5 and 6 a.m., which is not ideal…) This video […]
Continue Reading →Wolf-Hirschhorn Syndrome Awareness Day 2017
April 16 is Wolf-Hirschhorn Syndrome Awareness Day. What will you do to spread the word and increase understanding among those in your sphere? Share your pics and stories (and the pics and stories of others!) on April 16: On Wolfhirschhorn.org On Facebook On Twitter (@wolf_hirschhorn) Thank you all for your support of and contributions to […]
Continue Reading →Together
Sophia taught me this from the beginning of knowing her spirit in my womb. Of course, then, we did everything…together. Now it takes more purposeful focused attention to detail. Here’s my latest understanding “of getting” Phia, by listening to her words and by participating with her actions. “Shopping, Mom? Go shop?” She saw the shopping […]
Continue Reading →Post an update… Win this book!
We’d love an update on how your kiddo is doing! What are the challenges you’re facing this week, or in the coming months? Are you contemplating a procedure, or do you have surgical outcomes to share? How is therapy going? What new things have you tried? Do seizures continue to be a big factor, and […]
Continue Reading →All that we carry
Do you ever stop and think about all that our children carry, in a single day, to meet their needs? We load it up so regularly, we seldom reflect on it. At least, that’s how I feel. But it hit home the other day. I was typing up an email to my 5-year-old daughter Elsa’s […]
Continue Reading →Elsa Turns Fabulous 5
Our big girl Elsa is now 5. And my-oh-my, there is a lot going on in our world. Here are some updates across the board: Seizure: After two years of being seizure free, our neurologist OK’d Elsa going off of her seizure med Depakene. We started weening off of it two months ago, and… so […]
Continue Reading →Adult T-shirts Now Available!
The adult-sized “Real Stories. Real Power.” T-shirts are now ready! The shirts are available for 8 days through this Bonfire campaign. Buy yours today and help us spread awareness of WHS! https://www.bonfire.com/wolfhirschhorn-adult-tee/
Continue Reading →“Real Stories. Real Power.” T-shirts Available
We’re excited to share a fun T-shirt design for Holiday 2016! This new wolfhirschhorn.org T-shirt features a superhero theme because it can’t be denied: Our kids are real-life superheroes, who everyday face herculean obstacles and defy the odds. The shirt reads “Real Stories. Real Power.” That’s because here at wolfhirschhorn.org, we believe there is real […]
Continue Reading →Paige Stealing our Hearts – Halloween 18 Months
Hello Friends, Wow…I cannot believe Paige is already a year and a half. It has been a very humbling and educational time in our lives. Paige is just under 14 lbs, and she has grown to 28.5 inches. We have been very fortunate in regards to Paige’s health. She has only had two low grade […]
Continue Reading →Marshall: Halloween 2016
This was Marshall’s first time trick or treating door to door. He absolutely loved it. He held his hand out and put each piece of candy in the bag himself. You could see how proud of himself he was to do it.
Continue Reading →Our not so little monkey
In three years Bryan has grown from our tiny little peanut into our big chunky monkey so we thought this costume was fitting. This is the first year he went up to a few houses to trick or treat independently and really seemed to enjoy himself, though the South Texas heat tired him out quickly. […]
Continue Reading →Elsa: Halloween 2016
Elsa: Halloween 2016 Minnie Mouse was the look this year! And thankfully, it was warm-ish this Halloween, in our neck of the woods. I made a special request that Elsa was in a stander-on-wheels for the parade again this year, which her teacher gladly accommodated. It means so much to me, to see her up on […]
Continue Reading →Halloween 2016 Mr. Fredrickson(Nathaniel) & “little” brother Russel(Noah)
I didn’t have enough time to complete the whole costume in time to enter the 2016 Halloween contest, but I still wanted to show the final piece. We had such a blast! These guys were the ONLY characters from Up. It was the best. They had so many compliments and photos taken. Hope everyone had […]
Continue Reading →Halloween 2016
My sweet Caroline was a bumble bee this Halloween! She is now 3 years old, and it’s been a while since our last update, so here is a quick one! She started school officially this past August. She is in the Pre-K3 program at our local school and goes from 7-10:30 M-F. She is still […]
Continue Reading →Madison’s 15 Months update & Halloween Pictures 2016
Since our January update, when she turned 6 months, a lot has happened in our lives: Today we are overwhelmed with joy to see how far Madison has come, as she has meet most of her goals that were set regarding her weight and height. During her 2 weeks Wellness Check, her target weight for […]
Continue Reading →Halloween Event 2016
If you’re new to Wolfhirschhorn.org, you may not know it, but you are about to be inundated with some serious cuteness… Every year at Halloween, our kiddos put on their best costumes and wow us with creativity and inspiration. It’s a tradition at Wolfhirschhorn.org to share our costumes with each other on the website, and in […]
Continue Reading →Elsa’s 2016 Summer Vacation
Our family just wrapped a big weeklong summer vacation. It was a marathon. Can anyone relate? The packing… the maneuvering… the stress… and the fun, too, of course. On the trip: My husband and me, our girls Elsa (4.5 year old with WHS), Cecilia (3 years) and Lola (1.5 years), and 15 immediate family members in […]
Continue Reading →It has been a while…
Can it really be 2 years since I last posted here? I guess so! Well, a few of you have messaged me asking for a Mia update, so here are a few pics from the past while… Mia turned 5 in January and started school in August last year, where she has been doing great. […]
Continue Reading →Elsa’s eye surgery
In March 2016, Elsa had eye surgery. I won’t bury the lead, as they say in the newspaper industry… The results are crazy good. We have patched her eyes on and off for several years to address drifting. It seemed to work for a while, and then around age 3, not so much. Especially when […]
Continue Reading →Madison’s 2nd Trimester: (Oct 19,2015 to Jan 19,2016)
Greetings WHS Family, As we have already made our 1st trimester update, we now will share with you all our Daughter, Madison (born Jul. 19, 2015) 2nd Trimester of life as her journey with WHS continues: As parents, it’s an everyday learning process as having a 6 month old baby that’s basically a newborn in […]
Continue Reading →Donate to wolfhirschhorn.org
Contribute Your Story
To share your story, create your LOGIN and sign in once you receive your password via email. After logging in, write your story, upload pictures and publish your story! It's that easy. If you would like to comment on our stories, you can comment without creating a login. Each comment is posted once approved. If you need help, please email us.WHS Growth Chart
In 2007, a WHS growth chart was created. Download the Wolf-Hirschhorn Syndrome Growth Chart here.Most Popular Topics
1st Birthday 2011 Easter Birthday Christmas Dentist development Doctor Visits Early Intervention eating family feeding Feeding Tube food Fund Raiser Halloween Halloween 2011 Halloween Contest Holiday Hospital introduction IQ kidneys Kidney Transplant kidney ultrasound milestones Nayana physical therapy pictures School scooting Seizures Siblings Sitting Position Social Media Speech Therapy talking Tethered Spinal Cord Therapy Top 10 List Unborn Child update Vacation video Walking Weight GainSelect Your Story
- Addilynn (2)
- Alexander (9)
- Alexia (2)
- Ali (1)
- Amelia (23)
- Ansel (1)
- Arianna (2)
- Arin Rae (16)
- Ava Lynn (8)
- Ava Ruby (1)
- Bethany (2)
- Blake (3)
- Brett (2)
- Brodie (15)
- Caroline (9)
- Casen (1)
- Cassidy Renee (2)
- Charity (1)
- Charlotte Ellen (1)
- Claire (3)
- Clover (3)
- Contest (19)
- Corrine (1)
- Corwin (2)
- Dakota (1)
- DeLaney (1)
- Deliany (1)
- Denise (3)
- Devin (3)
- Dylan (16)
- Elijah (4)
- Ellye (3)
- Elsa (31)
- Emily Rose (5)
- Emma (7)
- Esme (3)
- Esperanza (2)
- Evan (2)
- Eve (3)
- Evelina (1)
- Evvie (2)
- Featured Stories (14)
- Fiona (4)
- Frank (6)
- Fund Raiser (13)
- Garner (1)
- General Information (23)
- Giveaway (2)
- Grace (5)
- Halloween (28)
- Harry (1)
- Hayden (2)
- Isabella (4)
- Isabella N (6)
- Jaap (1)
- Jada (2)
- Jake (1)
- James Douglas (2)
- Jon York (1)
- Joseph (1)
- Juliana (2)
- Justin (1)
- Karly (4)
- Karson (2)
- Kaylee (13)
- Kayleen (1)
- Kendall (82)
- Kinga (2)
- Leo (2)
- Liam (7)
- Liam John (1)
- Lists (2)
- Lucy (1)
- Madison (7)
- Magnolia (7)
- Marley (2)
- Marshall (1)
- Mason (3)
- Matilda (1)
- McKenzie (6)
- Mia Rose (25)
- Natalie (1)
- Nathan (1)
- Nathaniel (28)
- Nayana (3)
- News (3)
- Norrah (18)
- Olivia (1)
- Olivia Grace (6)
- Olivia Stella (1)
- Paisley (1)
- Parent Profile (2)
- Peyton (4)
- Quinn (2)
- Reese (1)
- Region Gatherings (2)
- Renee (1)
- Rheyn (6)
- Riley (6)
- Rochelle (3)
- Ryley (2)
- Sabrina (10)
- Savannah (1)
- Sergio (2)
- Shadyn (1)
- Social Media (10)
- Sophia (6)
- Talia (2)
- Talon (1)
- Tanner (13)
- Taylor (10)
- Taylor T (3)
- Teejay (4)
- Tommy (2)
- Tyler James (5)
- Tyler Jay (1)
- Unborn Child (7)
- Uncategorized (122)
- Vincent (1)