Learning To Walk

Yesterday, the early intervention therapist started the conversation about Ankle-Foot Orthotics (AFO) for Charlie. While I was hoping it was something that could be avoided, I knew it was a possibility. Her developmental pediatrician mentioned that Charlie may need orthotics when he first assessed Charlie.

A couple months after Charlie was discharged from the NICU, something was awry with her motor development. The first indication was torticolis that was discovered while she was hospitalized for a feeding issue. Consequently, she was enrolled in PT through early intervention.  Shortly there after, her arms and hands were rigid while there was something unusual with the muscle tone in her legs.  Furthermore, she had missed her expected milestones. After discussing my concerns with her regular pediatrician we agreed a developmental pediatrician’s opinion was needed.

After a thorough evaluation by the developmental clinic, it was noted that Charlie was delayed in gross motor, fine motor, speech, and feeding. Additionally, it was documented that she had sensory issues. She has made amazing progress since the initial evaluation through PT, OT, and speech therapy. The improvement was so great that I hoped orthotics were no longer in the picture.

Unfortunately, it seems that Charlie is stuck once again. She has learned to pull to a stand. However, for some reason she is limited to only standing for a few seconds on her toes. She will “walk” on her knees. Since she has vision problems affecting her depth perception, there was the possibility her new glasses would help. But, there has been no improvement in her ability to stand or creep.

Her therapist has recommended that we look into the possibility of AFOs to aid Charlie. I am not sure how I feel about it. Part of me is worn by the thought of additional appointments, I feel sad for her that she has to learn to tolerate another device, another part is frustrated that I can’t find the solution as to why progress halted, and the last part is hopeful that this will be what she needs to move forward.

With that hope, I made an appointment with Charlie’s developmental pediatrician to discuss AFOs and this recent development. This may be how she learns to walk. At the beginning of her therapy, I wondered if she would even be able to do that.

bath_edited

Charlie’s dad dries her off after a bath.

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About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

4 responses to “Learning To Walk

  • Heather L

    Doesn’t it sometimes feel like the effects of prematurity are never-ending? Life after NICU wasn’t at all what we expected; I’m sure you are feeling the same. While we are still relatively new to prematurity (3 years into the journey), I remember the first 2 years, especially, as full of missed milestones, therapies, delay diagnoses, medications, and doctors appointments. While Jack is not in any way “caught up,” even at 3, things have finally relaxed. It’s hard to see that while in the thick of things, but know that you are doing what’s best for Charlie with the information/advice/prescriptions that are given to you. Charlie knows how much you love her and advocate for her! P.S. Jack has low-tone…didn’t start crawling until he was 12 months, sitting unassisted around the same time. Standing unassisted at 16 months and walking a few steps, finally, at 18-19 months. Now, at 3, he runs everywhere! (Even so, his PT could tell you all the inappropriate ways he uses his muscles to run, walk, sit, etc. Like I said, never-ending…always under the microscope.) Best wishes with whatever path (or assistive device) you choose!

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  • Alyssa

    Right when you get used to your new “normal” it seems like something else pops up, right? We didn’t start using SMOs until after Virginia was already walking but I now wish we had tried them sooner. She started taking very tentative steps at 17 months but didnt truly start walking until 19-20 months. We finally put her in SMOs at 22 months and notice a difference in the coordination of her gait. Its still too soon to tell how helpful they will be for her, but I was surprised how quickly she adapted to them.

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