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"Elsa"
Sending hugs and hellos from the Schulte family today, on Wolf-Hirschhorn Day! We are wearing our jeans, in support of rare jeans. It was a little rushed on our way out the door for school, but we got a pic! I also wanted to share some fun news… today is also the cover reveal of […]
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Happy Fall everyone! I wanted to share an update about what’s new with Elsa, age 8, these days… We aren’t back to school full-time (yet?), but have established a rhythm of sorts. She goes into her school for therapy for an hour on Monday and an hour on Wednesdays, and goes to outpatient PT at […]
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It’s been a rough couple of months, since COVID-19 began sweeping through the world. Our family has followed the guidelines of our state closely. We have no idea how our daughter Elsa (age 8, who has WHS) would do, if she got COVID. She’s been hospitalized numerous times, for operations and seizures, and one of […]
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Elsa is now 8 years old – a young lady! She continues to make slow-but-steady progress across many areas. She is sooooo darn smart. Her personality remains persistently sweet, and she is always excited to engage (and snuggle) one-on-one with friends, family, classmates and therapists. This past year brought challenges, of course, particularly with self-hitting […]
Continue Reading →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: […]
Continue Reading →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. […]
Continue Reading →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 […]
Continue Reading →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 […]
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 →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 →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 […]
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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 […]
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 […]
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 →We were so excited to learn recently that a family with a young daughter with WHS had moved into our area. Not the same town, but very very close by. Coincidentally (or by the Lord’s design, in my opinion), our paths crossed through our pediatrician — very respected in the area — who now has […]
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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 […]
Continue Reading →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 […]
Continue Reading →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 […]
Continue Reading →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 […]
Continue Reading →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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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 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 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 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 […]
Continue Reading →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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