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 →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 →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 →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 →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 →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 →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 →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 →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 →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 →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 →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 →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 →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 […]
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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 […]
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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.
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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. […]
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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 […]
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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 →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 →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 →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 →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 […]
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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 →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 →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 →Greetings WHS Family, As we already made our formal introduction of our Daughter Madison Sergeant, we will proceed to share what life has been like. After 4 days, we left MUSC NICU at 5:30pm with the instructions to take our baby girl the next day to her Pediatrician. At this moment I was anxious, fearful, […]
Continue Reading →Hello everyone, my husband and I are planning on attending the convention in LA in July , does anyone have any info on that if so we would appreciate it so much. Thanks
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