Wednesday, October 30, 2013

When Little Things Add Up

You might have seen THIS on Facebook yesterday.
In case you're wondering, yes that is my tiny little unbalanced daughter whose legs are so short they can barely reach the next step and whose hands can hardly even reach the railing, walking frontwards down the stairs all by herself, and standing up, holding on with one hand. The heart attack didn't occur when I first realized this is what she has been practicing every day while I feed Hudson on the couch and she plays around the corner on the stairs. No, the heart attack occurred later that day when I saw her balancing at the very very tip top of the stairs, walking across the top one, in order to get to the railing. Oh my.. One little misstep and....  *shudders at the thought. (This does make a pretty good case though and another excuse why, after 4 1/2 years of living here, we still have yet to stain and finish the stairs. Polyurethaned steps would be much too slippery in footie pajamas, don't you think??)

I wonder how long the sneaky little bean has been doing this?? She does play on the stairs quite a bit while I'm feeding Hudson, but I assumed she was just crawling up and down, or harmlessly sitting on the bottom step, swinging her legs, like I'd seen her doing before. Just the other day I was walking down the stairs with her, holding her hand, and thinking how much she was relying on me to balance herself and how far away we were from her being able to do this independently.. HA! Little did I know she's probably been doing it for weeks behind my back. 

Anyways.. this got me thinking. Being the parent of a developmentally delayed child can be frustrating. Milestones can be few and far between. It can be difficult watching other typically developing kids race ahead of where your child is and wonder how long it will take for yours to get there, or if they ever will. It's easy to get lost in the day to day care of your child where hard, diligent work is put in, yet progress can feel slow and tedious. 

But then something big happens. Something unexpected. Something as terrifying as your baby standing at the top of the stairs, walking down them all by themselves, and it causes you to stop and think, "How did we get here??"

While I don't dwell on all the things Ella is not doing nearly as much as I used to, I realized I also haven't thought much lately in detail about all the amazing things she has been doing. I decided to sit down and think back a few months of what life was like at the beginning of the summer and compare it to now. This is what I came up with.

First of all, a few months ago, at the beginning of the summer Ella wasn't even walking. I can't decide if it's more unbelievable that walking is a fairly recent development for her, or that I have become so spoiled and ungrateful to let myself forget how huge this was for her. I went back and watched the video of her walking for the first time. *tears. I might have gotten so caught up in life that I hadn't realized how not-so-long-ago this was, but I will never ever forget that day or how I felt. 

Also, at the beginning of the summer Ella was still very very timid about many things. She refused to sit on a little hot wheels tricycle-screamed bloody murder, was extremely upset if I tried to set her on one. Now?

Her brothers are the ones that are upset that she won't leave them alone to derby-bike.

Same thing with the Cozy Coupe car. Freaked. Out. I think it's safe to say she's gotten over that. 

And the Menards cart too.

Oh, and that swing that used to be so terrifying? Not so much anymore. She even climbs the 6 foot ladder to the top of our slide all by herself to fearlessly go down. (No pics there since I'm always on alert to spare her from impeding concussion.)

There were some other things I was worried about doing with her this summer, not knowing how she would react to them.
Camping? Check.

Firecrackers? She threw those snaps like a boss.

Demolition Derby? I was certain one of us would be walking around the fairgrounds with her, far away from the noise and action. If this picture is any indication of how she reacted, I was pretty wrong.

When I think about it, it really wasn't that long ago we were dealing with an NG tube. 

Well, it's safe to say Ella enjoyed this summer's bounty.

Ella has also gotten so good at climbing.

on everything

Here is that little horse she loves to ride.
Gee, this picture would have been really great to find for that other post that was actually about this horse. I might go switch that..

And while Ella still doesn't care for her own bath time, she certainly has no hesitation in getting soaking wet from her brother' bath.

Another big accomplishment for Ella has to do with her medications. She is officially off of all reflux medicines! This is HUGE for a CdLS-er since reflux is such a common problem. I would like to tell you that weaning her off her Prevacid was a very meticulous and involved process, requiring a scientifically mathematical equation of proper dosage restrictions so as not to overwhelm her system.. but in all honestly Ella was actually playing with the pill bottle one day last spring and hid it from me and by the time we dug out from a late snow storm a few days later and got to town, I realized she hadn't had it for a few days and was doing just fine so I called the doctor and we went with it! We have also cut her Miralax dosage in half and are working on gradually cutting it down even further. 

Ella has grown by leaps and bounds in her stranger anxiety as well. She still won't go to just anyone, but there have been occasions where people not on her VIP list of 4 have been able to pick her up and hold her for brief amounts of time. I have also been able to leave the room without carrying her everywhere with me, even if that means she's alone with people she isn't as familiar with. That is a very big change from a few months ago--one I never want to take for granted!

She tries to say more words and learns new signs every week and is working with pictures to help her communication as well. She decided riding in the stroller isn't so bad after all (immediately after I sold our double stroller since she refused to ride in it.. of course) so going for a walk is finally an option again! She is also starting to realize that her little feet are able to wear hard-soled shoes so our shoe choices have now exponentially increased (exciting since we just inherited about 20 pairs of adorable             shoes.) And just the other day at a doctor's appointment, Ella actually stood on the big girl scale (a whopping 21 pounds!!) instead of sitting and screaming on the baby scale and also stood against the wall to measure height.

And best of all, Ella has become a pretty amazing big sister to this guy. 

I'd say she's pretty proud of herself. 

And so are we. What a difference a few months can make!!


  1. Wow--I hadn't realized all that had happened so recently either. She has really blossomed!

  2. I can't believe how big she is getting! :) All the kiddos look great!