Currently viewing the category: "Uncategorized"

Baby Casen 2015

November 2, 2015 by

Hey everyone, Casen is currently 18 months old and weighs 14.9 lbs. he is strictly g-tube fed and will not eat by mouth. He doesn’t seem to be getting bigger, he is still on infamil for preemies 5 ounces every 3 hours. If anyone has any suggestions on how to get him food besides the […]

Continue Reading

Ethan: Halloween 2015

November 2, 2015 by

Ethan was a bat this year for Halloween!  I’m a little biased but I have to say he’s much cuter than the bats I’ve come across.  We had a great time trick or treating with his older brother and were thankful everyone was healthy for it.

Continue Reading

Elsa Halloween 2015

November 1, 2015 by

Elsa was a swan for Halloween this year — quite fitting for her calm, graceful demeanor, I must say! Her costume was a mash up composed of a faux fur hat that my sisters and I wore long ago when playing dress up and a hand-me-down dance recital costume. In a pre-school parade filled with super […]

Continue Reading

Here’s a pic of Esperanza, age 6, as a lady bug.

Continue Reading

Jayna Halloween 2015

October 30, 2015 by

Jayna was garfield. She is 8 yrs old. She loves going trick or treating. But was not happy about the head.

Continue Reading

Halloween Event 2015

October 27, 2015 by

                Halloween is just a few days away, and many of you are surely getting your child’s costume prepped and ready to go. In addition to hitting your school parade and neighborhood trick-or-treat circuit, be sure to participate in our annual WHS Halloween Costume Event, right here at […]

Continue Reading

Elsa: Reading with Switch

October 8, 2015 by

Elsa has had switches to use for communication for quite some time, but I don’t think I’ve ever posted how we use them. Here, we’re reading a book made by her teacher at preschool. It’s fashioned after Brown Bear, Brown Bear. But instead of the flow of colors and animals, it features real pictures of […]

Continue Reading

Elsa: Therapy at the Park

August 17, 2015 by

This summer, we went to a new neighborhood park with lots of nice shiny equipment, including a sweet child-sized black gloss finished picnic table. Eager to try out Elsa’s more independent sitting skills, I put her on her bottom, on the seat facing out onto the concrete pavement below. Perhaps you can guess what happened next. I looked […]

Continue Reading

Elsa: Playtime at home

July 16, 2015 by

There is nothing terribly momentous about this video, but I wanted to share. This is just Elsa playing with one of her favorite toys in our kitchen… a toy that her sister stole from our speech therapist’s toy bag, a common occurrence, unfortunately. (Why are their toys so much cooler than ours?? Even the oldies […]

Continue Reading

Baby casen 2015

May 21, 2015 by

Hello everyone we just wanted to give an update on baby casen , he resently had a his big 1 birthday!!! Casen has been doing very well, he has only had two small seizures since December , he’s doing very well on keppra. Casen is smiling , grabing at toys, he is such a happy […]

Continue Reading

Paige Elizabeth

May 13, 2015 by

Greetings, We are new to the Wolf-Hirschhorn family.  Our daughter, Paige Elizabeth, was born on April 27, 2015.  She weighed 4lbs, 3 ounces.  We found out last Thursday that Paige has been diagnosed with WHS.  She is currently still in the NICU due to feeding issues.  We are pretty certain she will have to come […]

Continue Reading

Hope you all had a wonderful holiday season. On behalf of the wolfhirschhorn.org community, I’d like to send a HUGE thank you to everyone who participated in the 2014 Halloween Event and Holiday Fundraiser… For posting pics of your kiddos in their costumes, purchasing tote bags, and sharing the posts with your social networks, families […]

Continue Reading

Thankful

November 26, 2014 by

It’s funny how typically you have a baby and your family increases by one (more if you have multiples).  If you look way into the future that one child may take a husband or wife increasing your family again, then maybe a grandchild or two will come into the picture.  Usually our families increase in […]

Continue Reading

Maryland

November 23, 2014 by

An update on Joseph who is now 16 and doing great. It has been awhile since I wrote the article Gods Handiwork and put it on our site. We may be transferring to Maryland and have alot of anxiety about the move and the services for Joseph. If anyone knows what the services are like […]

Continue Reading

This is Little Miss Kennedy, she is 3 years old. She is Tinker Bell this year.

Continue Reading

Garner dressed up as Albert Einstein for Halloween this year. We always tell him that he is as smart as Einstein so I felt it was suiting for him to dress like the genius. Garner did not like the glasses, we were fortunate to be able to get even one picture of him in them. […]

Continue Reading

We spent Ethan’s first Halloween in 2013 at our local urgent care clinic, so this was the first Halloween we were able to celebrate with him.  We had so much fun!  Yoda seemed so appropriate as a costume since Yoda was also one that shouldn’t be judged by his size.  He may be little but […]

Continue Reading

Liam is my super hero every day.

Continue Reading

Evelyn celebrates her first Halloween in 2014! She is 7 months old and just shy of 10 lbs.! She has been through a lot these last 7 months, including 2 trips to the ER, G tube surgery and joining the seizure club. She has remained her sweet, strong self through it all! We look forward […]

Continue Reading

Halloween Event 2014

October 29, 2014 by

  It’s Halloween week, and you know what that means… It’s time for the annual WHS Halloween Costume Extravaganza! This is our fun way of getting the WHS community engaged around a universal tradition – dressing our cuties up for the holidays and snapping their pics. Pictured above are Fiona and Ethan, last year’s top […]

Continue Reading

Hello Everyone, I would like to start off by saying thank you for all of your posts.  I’ve been reading them on and off for at least six months now.  Sometimes they bring comfort and joy, sometimes knowledge, and I will admit, many times I have wept uncontrollably for you and your children (and maybe […]

Continue Reading

Elsa: Summer at 2 1/2

July 18, 2014 by

  Hello all! Just wanted to share a quick update of Elsa at age 2.5. – Right now, she is just shy of 23 pounds and 34 inches long. Her hair is really growing now. Most of her teeth came in at about 27 months. – Feeding hasn’t been going great since her last seizure, in April […]

Continue Reading

National 4-P Day!!!

April 16, 2014 by

Today is National 4-P day, Wolfhirschhorn Awareness.  Here’s Jordan wearing her 4-P tshirt.  I told her is was 4-P day and she gleefully replied “4-P for me!!” She cracks me up.  4-P accessories are available on the 4-p support site.  Enjoy your special day families.

Continue Reading

Need a doctor

April 15, 2014 by

Can anyone recommend a Dr. that they’ve dealt with, and like, that specializes in WHS? We live in Wyoming and don’t have anyone that understands our girl.  In fact, we just lost the best pedi neuro we’ve ever had.  The Dr. that replaced her is a sleep specialist and informed us that she knows nothing […]

Continue Reading

Meet Jordan

April 14, 2014 by

This is an addition to “Ten years in”. Just wanted to introduce you to our sweet girl. And in case you all didn’t know, April 16th is National 4P awareness day!

Continue Reading

every morning that there is a trip to the doctors office i always prepare myself for bad news and im pretty sure that is what the daily life is for families that have children with whs. i spent weeks preparing for this month. why? because it was revisit to every specialist. so far we visited […]

Continue Reading

Adventures in Communication

December 14, 2013 by

Hello, friends, In April, I stumbled upon this excellent article, An Open Letter to the Parent of a Child with Speech Delays. The piece was so thorough and helpful and seemed to be written precisely for Fiona’s situation (and seemed to address, with lots of compassion, all of my own feelings and initial responses to […]

Continue Reading

I don’t even know how to start this off. usually when i’m outside with talon i usually get the oh my your baby is beautiful or how old is he and the usual congrats. but yesterday it made me realize that they’re are some snotty people out there. yesterday was a back to back appointment […]

Continue Reading

at times i catch myself sitting and thinking way to much. more so when sitting in the waiting room at the dr’s office or the lab. yesterday for example i saw two different kids. one perfectly fine and singing a long to spongebob’s theme song and another sitting in a wheelchair with a few noticeable […]

Continue Reading

As we’ve gone along our journey we’ve had the greatest support from family and friends.  This is everything to us as we don’t walk alone. We Wear Orange for………                                 . Phia’s Grandparents, (while supporting another grandchild’s football game) proudly wearing orange. […]

Continue Reading