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. 

Now? 

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!!

Week in Review

Discovered mouse in house... disgusted.

Hearing test reveals tubes have fallen out and Nolan can only hear 50% of what we say... exasperated

Notice Charlie's first permanent tooth has grown in... excited!

Realize soon after he will need some serious dental work... depressed, start saving now.

Call every dentist in the tri-state area to have mortifying amount of cavities filled for Charlie and also discuss this new severely out of place tooth, but can't be seen for months... discouraged

Dog kills 2 chickens... P.O.-ed.

Eat peanut butter by the spoonful along with bag of chocolate chips... feel better.

Husband discovers dirty peanut butter spoon and half eaten bag of chocolate chips... feels sheepish.

Plan to attend former high school's last ever Homecoming football game... sad they have to close their doors.

Call credit card companies and other bill places to complain about late charges and interest fees on bills I didn't even receive... irritated.

Find those bills buried in a pile of papers... oops.

Get Ella to sleep, Hudson wakes up. Get Hudson to sleep, Ella wakes up, etc.... tired.

Start to make banana bread and realize husband threw away all bananas the night before... annoyed.

Husband brings home chocolate covered potato chip ice cream... husband is redeemed and I can handle life again.

Reminders

I have been sensing something the past few weeks. Little reminders that have popped into my head every so often. Nothing huge. Nothing alarming. Just little thoughts and somewhat dimly lit memories fading in and out.

A pink checkered blanket that I recently pulled out for these cool fall nights.. the same one I once clutched to my chest when I thought I had just held my daughter for the last time.

The sight and sounds of witnessing a helicopter touch ground.. reminding me of when I viewed that from the inside looking out.

A commercial for the CMA's.. which for some reason I vividly remember watching by myself in a corner of our PICU room.

A link posted on Facebook of the funniest auto corrects from 2012.. a list similar to the one I remember sitting up late at night giggling over in 2011. (I'm sure our nurses all wondered what in the world could be so funny to hear late night hysterics coming from a PICU room.)

The fall wreath I hung on our front door.. the same one I made to help pass the time while Ella was on the ventilator, and which I actually left the hospital room for the first time to go buy the fabric for.

Parent/Teacher Conferences that we attended for Charlie's Kindergarten.. the ones I remember missing during Nolan's year of Kindergarten since we were a little busy.. you know.. fighting for our daughter's life.

The signs have been all around me, reminding me of the passing time. It's now been 2 years since Ella was sick. So so sick. Like most memories, in some ways I can remember certain details like it was yesterday, but in other ways it feels like a lifetime ago. (Here's last year's post if you want to be reminded)

I missed the exact date of Ella's 2 year anniversary. But that's okay. I'm finding I don't need to dwell on our past and be continually haunted by those memories. Right now I'm too busy living life. Too busy being thankful. Thankful to be home every night with my family. Thankful to be able to tuck each of our kids into their warm, safe beds. Thankful for the smell of banana bread baking in the oven. For hot coffee and warm blankets. Thankful for a little girl who is blossoming before my very eyes, doing amazing things and surprising us every day.

Just the other night as I sat down on the couch after a long day I looked over and saw Ella sitting on her little rocking horse, slowly rocking. Back.. and forth. Back.. and forth. Tears instantly sprang to my eyes. I had never seen her get on it by herself before, never seen her rock without holding my hand. And as I watched her I became lost in the moment, in the methodical rocking of back.. and forth. And I was amazed. Amazed at how far she has come. Amazed at how close we came to losing her. Amazed at how different our lives would be without her.

Two years. I am amazed. And so very thankful.

Coming soon to a Pediatrician near you

I have a confession. 

I've been keeping a secret from you all. 

Ella is about to achieve world wide fame and recognition.

Ok, maybe that's an exaggeration. But her face has been appearing on Pediatrician's desks all across the country!

Let me explain.. Every year the CdLS Foundation does a targeted campaign in an effort to bring awareness to this rare and often un- or mis-diagnosed symdrone. A few months ago the Foundation contacted me about the idea of creating a 6x9 inch postcard to send to pediatricians and medical professionals attending the American Academy of Pediatrics Conference in Orlando, FL in October, with hopes of inspiring them to stop by their booth and learn more and get a diagnostic checklist to help other families with a child with CdLS.

And this is how it turned out!

front

back

We are super excited about this postcard because 

a.) well.. it's adorable. and 

b.) we really hope it brings awareness and helps other families like ours get the help and support they need!

I hope your Pediatrician is awesome enough to get one of these! :)

Fundraising Update

First of all, THANK YOU so much for all the support from my last post about fundraising for 2014 CdLS Conference. Thank you for all the ideas, support, and offers of help! I was humbly overwhelmed by everyone's response. For the first time, this actually feels real instead of a distant dream. Like, maybe we really can make it to California next summer. We'll see..

For now, my kitchen and I are becoming pretty tight BFF's, preparing for a

this coming Saturday. 

(Okay.. I might have had a Sunday evening fling with some brown paper bags and leftover scrapbook paper too..)

Some other ideas for fundraising I'm entertaining is a possible dinner or breakfast of sorts this winter, along with either a raffle or silent auction. And this spring, a potential 5K. This is the idea I'm most excited about. Maybe because it's the farthest away and I don't have to think much about planning it quite yet. Or maybe it's because I think if I can sit on my butt and plan a 5K I can pretend I'm actually in the same club as my athletic friends who actually run 5K's (and longer).. Either way it sounds like fun and something we could even make into an annual event to help raise money and awareness for the CdLS Foundation. 

Anyways, if anyone has any Bake Sale expertise or ideas/opinions (ie: what would you pay for a loaf of banana  bread? or a dozen cookies? I have absolutely no idea what to charge..) I would love to hear them. Judging by how things go on Saturday, at this time next week we'll either be one step closer to California or 300 pounds heavier from consuming the leftovers.. I'll let you know. :)