Search results for "elsa"

The weather has been pretty rough so far this winter, so we’re maximizing our indoor time. This has brought about some fun updates, which I’m excited to share… While we await a new standing frame, Elsa’s been standing at a chair that’s actually a decent height to facilitate up-right time. Last week, she surprised us […]

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Our little girl has wings! Elsa, now 5 1/2, was a fairy this year for Halloween. She’s standing against the wall here – but still. Looking so good in standing these days. Can’t wait to see everyone’s costumes this year! Reminder that if you post to the WHS website, you could win an amazing prize […]

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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, […]

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Elsa Turns Fabulous 5

January 31, 2017 by

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 […]

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Elsa: Halloween 2016

November 2, 2016 by

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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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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Elsa’s eye surgery

June 8, 2016 by

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 […]

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Elsa turns 4

February 27, 2016 by

Hi all, I cannot believe our Elsa is 4. Years 1, 2 and 3 were so full of medical issues and doctors visits and life coordination. Ever since she turned 3, it seems we’ve fallen into a rhythm of sorts. Don’t get me wrong, we have our tough times. And we still somehow have 2 […]

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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 […]

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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 […]

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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 […]

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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 […]

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Elsa Turns 3

March 5, 2015 by

Elsa turned 3 in late December, and I’m a little late in posting due to the arrival of our third child in January. There is much to report, so I’ll get right to it!                     School: Elsa started preschool in January. We got a call from […]

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Elsa: At-Home Prolonged EEG

January 3, 2015 by

Elsa had an at-home prolonged EEG in December. We monitored her brain activity for seizures for about 48 hours, in her home environment. We pushed the button 14 times for suspected seizure activity, but everything came back negative — no seizures at all. For now, a 2.5 ml depakene dose, 3 times a day, continues […]

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Elsa’s Halloween Pic: 2014

November 2, 2014 by

Our Elsa was a puppy this year – and pretty happy about it! It was a really soft costume… We’ve been so fortunate to have borrowed costumes the past few years from my nephew. The fact that “puppy” fit as well as it did is a real testament to her growth! She’s getting to be […]

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Elsa, with Bells On…

October 7, 2014 by

Elsa is now 33 months and really starting to move on her feet. Here she is taking steps with her PT with really limited help/support. We recently advocated for two times a week of PT, to make the most of her Early Intervention support from the state before she ages out at year’s end. Elsa […]

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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 […]

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Elsa: 21 Months

October 7, 2013 by

We wanted to share some updates on Elsa — as she passes the 21 month mark: Prevacid: After being told by many a doctor that Elsa is “just a pukey kid,” last week she went on Prevacid for reflux. It has already made a remarkable difference. Normally, a cold leads to 3 or more pukes […]

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Elsa: Big Sister

July 29, 2013 by

Elsa is officially a big sister! On June 22, 2013, we welcomed little sis Cecilia to the family. Elsa was a little skeptical at first… And gave her a few sideways glances… But she’s coming around… The little ladies are almost exactly 18 months apart. Right around the time that Cecilia joined the family, Elsa made three […]

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Elsa: 16 months

April 27, 2013 by

Elsa is 16 months and really hitting her stride! Around the time of her one-year birthday, it seemed her development had pressed the pause button. We think she must have overheard us discussing this, because shortly thereafter, there were some pretty major developments: –  Reaching and grasping: This was a no-go at her one-year eval. […]

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Elsa: 1 year

January 5, 2013 by

Elsa just turned 1, and we’re looking forward to lots of progress in 2013. We’d love to share her current status across a few areas — ones that we’re always keen to read in other people’s posts, as we look to the future and wonder what might be in store for our angel. Hope this […]

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Elsa: 7 months

August 3, 2012 by

  The 7 month mark brought a bunch of exciting events for our Elsa. In honor of the milestone, we’ll share the top 7 highlights: 10 pounds: Elsa made it to double digits around July 4. She was cookin’ for quite a while, after we switched from Level 2 to Level 3 nipples. That seemed to […]

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In early April, the Schulte’s and O’Brien’s arranged a meet up to visit and get to know each other; but more importantly, get to meet Kendall and Elsa. We decided to collectively write a post about our feelings of the past and future. Here is our story… Looking forward Meeting Kendall, for us, was like […]

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Elsa: 4 Months

April 29, 2012 by

Our little Elsa is now 4 months old! Hard to believe, as time has flown so very quickly. We love our little angel so much. She is doing very well, and the WHS community continues to be such an amazing support to us. Thank you all for your messages! Here are some updates, across a […]

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Introducing Elsa

February 21, 2012 by

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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If you’ve ever wondered what a real superhero looks like, we have the answer! The Holiday Fundraiser item is a Superhero Photobook. Cover reveal… Within the pages of this special book, you’ll find the photos of 36 superheroes – children with Wolf-Hirschhorn Syndrome, who wow us every day with their bravery and heart. Here’s a […]

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Hi everyone! Thanks so much to all who shared the Summer Fun Slideshow last month. As of today (Aug. 23), it’s been viewed 424 times!! We are thrilled that so many were able to see our kids enjoying summer. An extra thanks to the 25 families who participated in the event. We plan to do another […]

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Summer is off an running. Let’s be real… how are you doing? On our end, we’ve done a few camps and used a daycare program sporadically, to get a little free time. And to give Elsa’s mobility a boost, we’ve been pushing her hard on walking. Naturally, it takes a lot of time and energy. […]

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I don’t want to write a super detailed post on this topic, but I did want to share that Elsa is going on the potty… regularly!! (She is age 6 1/2, and we’re just now officially making it part of our routine.) I think this new development is the result of a myriad of things: […]

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Center of Attention

April 9, 2018 by

It’s easy to be hard on yourself, as a parent. As the mom of three small kids, things are busy. And often I take the path of (not least resistance, but…) greatest efficiency. I’m always trying to streamline, always thinking five steps ahead. Something I certainly don’t do enough: Make Elsa the center of attention. […]

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