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. Her g-tube has enabled us to keep her growing (up and out), and we’re grateful that she presently has some extra lb’s on her – a nice cushion, in case illness should strike.
But with every pound she gains, there’s more of her to move.
- Up and down the stairs.
- In and out of the car.
- In and out of the wheelchair.
- In and out of the bath tub.
When my husband is home, I clock out of Elsa-lifting duty. Whew, what a relief. I know I’m very blessed and fortunate to have this luxury.
It’s not that Elsa is crazy heavy, so much as that she doesn’t hold on to whomever is carrying her. Sometimes, she even leans back – into door frames, corners, shelving, appliances. Her reaching has improved, which is woooonderful. But trying to keep my balance as I come up the stairs with her, when she’s swiping at pictures hanging on the wall, can be tricky.
As life gets a little more exciting in the summer (pool time, boating, hiking, etc.) facilitating movement can become a challenge. We are committed to making sure that she’s always included, it just takes extra planning and, sometimes, some pretty awkward maneuvering.
Here’s a video of us at a park. I like her to help her access the playground in any way I can. Stairs, slides, whatever we can manage. She doesn’t always love it… as you’ll see…
It’s work, right? A lot of work. My husband and I spend a lot of time hunched over, like in this video. I’m not sure if we are doing long-term damage to our backs or not. But we do NOT want Elsa to get too comfortable in that wheelchair of hers, if there’s a chance she might walk.
Have any of you experienced “tipping points” with your kiddos, in their progress towards walking? If so, please share what’s worked in the comments section below.
Therapy techniques? Equipment? Motivators? Anything at all would be helpful.
To gather up advice and recommendations, social shares of this post (on Facebook and Twitter) are very appreciated!
Elsa’s mom Anitra also blogs about family life at www.anitraroweschulte.com/blog.
4 Responses to Living in Lockstep
Leave a Reply
Donate to wolfhirschhorn.org
subscribe
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 contest results Dentist development Doctor Visits Early Intervention eating family feeding Feeding Tube food Fund Raiser Halloween Halloween 2011 Halloween Contest Holiday Hospital introduction IQ Kidney Transplant kidney ultrasound Magnolia milestones Nayana Parent Profile physical therapy pictures School scooting Seizures Siblings Sitting Position Social Media Special Needs Speech Therapy talking Therapy Top 10 List Unborn Child update 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 (32)
- 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 (3)
- 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)
- Lisa (3)
- Lists (2)
- Lucy (1)
- Madison (7)
- Magnolia (7)
- Marley (2)
- Marshall (1)
- Mason (3)
- Matilda (1)
- McKenzie (6)
- Mia Rose (27)
- 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 (128)
- Vincent (1)
Google Ads 1
Google Ads 2
Google Ads 3
What a fantastic job you do. One exercise that can help – if you do not already use it – laying on your back, pull your knees up and pull them slowly to your body. It helps stretch your spine and lower lumbar region. Don’t overdo it. Anitra, Dan, you and your family are a super living example of love. We could all do well to emulate you.
Hi Anitra – Wow! Look at Elsa go. That is awesome that she seems to put weight on her legs. So far, Paige does not do that, but this video gives me some hope.
My back hurts a lot, and Paige is only 15.5 lbs! I can’t imagine when she is more than twice her current weight. Thank you for posting this as I will look forward to other parent’s suggestions.
Keely, thank you for sharing our excitement on Elsa’s walking progress – slow though it may be! I see many similarities between Paige and Elsa, I think she will do SO much. We’ll just have to keep guarding and strengthening our backs. Our girls certainly won’t be getting any lighter, which is a good thing!!
Wow Elsa reminds me so much of my Grace! Grace is 5 years old and 17kg! Love reading your posts about Elsa