Tag Archives: development

Snippets of Fall 2014

I’ve gotten too far behind on posting. It’s been dizzying how much keeps changing and how I can’t keep up with time moving forward. So consider this a drop in the bucket. A collection of moments that I have string together with a few photos.

We are in awe of our little warrior. Every day brings something new I just had to stop writing it all down. Now I have forgotten things I said I would document. But the good news is I have been there for everything and I am so deeply moved by her love for me. We have a very special bond.

It’s not just for me though. Her personality keeps breaking through and she now sees her brother in a way that is closer to the beautifully innocent admiration you see between bigs and littles. She also seems to know who is the boss. She doesn’t shy away from letting him know when he is in her way and an elbow or a grab of hair always gives us a giggle. (We will work on good behavior next year.) Right now we are just proud of our tough sassafras.

Gaining confidence

I think we are also seeing her be a little more sure of her body and her surroundings. We have been able to enjoy the park a little more this fall and she recognizes it now. She got very brave in the photos where she is holding into the rope, she is also standing on a rope. I was propping her back for a while and she was testing her legs and arms. But I could tell she had stopped using me for support and she was really pulling herself to center to hold balance (core tummy muscles) and we grabbed this shot if her being pretty proud of herself.


Independence is another challenging topic with her. Of course we are so excited for her to be understanding some new concepts of life. We are even cautiously trying to give her those moments of exploration and research. Sometimes I feel like she’s in this soundproof glass house and we are supposed to just watch her and not interrupt her little world. But we take every opportunity we can to reinforce communication and the practices we want her to follow.


The ride back from Austin after Thanksgiving was a funny example. D sat in the way back so I didn’t have my usual assistant shuffling things around in the back. Plus, we had too much stuff crammed in around the kids and the dog that My sweet, innocent little girl found herself right next to a big bag of pirates booty. (White cheddar rice puffs) The pic doesn’t do it justice but not only was she reaching in and serving herself handfuls of puffs, she started to put some back when she was done. No matter that a couple were slightly gummy from a test drive in her mouth. All this to say the girl will figure things out her way and we are merely here for supervision and her own protection. Otherwise, it’s best if we just stay out of her way when she gets an idea in her head.

So that’s just a taste of Reesey introducing herself to us. It’s spotty and many times it’s almost like it never happened. She reverts back to a fussy baby in my eyes and I forget she was just climbing on a stool trying to wash her hands. It’s still an emotional ride, but we will take it for sure!

Messy Art

It is a work of art isn’t it? Somewhere in this chaos she finds comfort. I don’t know why. Takes her 15 min to create the mess, then she sits in the middle and soaks it all in. #mylovebug #sorting #obsessing #herway #okwithchange #loveforbooks via Instagram http://ift.tt/1wYNSlp

Our Little Exploradora

Snapped these when I found her in the corner of forgotten toys. Weeks ago I stacked up some odds and ends behind the couch and she managed to wedge herself in here between the pirate ship and the monster truck.

I figure this tough little girl is bound for a tomboy future, and entitled to just about anything else she wants, too. But it’s a bigger deal than just being a toddler… Continue reading Our Little Exploradora

Pointer Fingers and Personal Connections

It’s been since the last surgery that we noticed Reese pulling out that left pointer finger. It’s one of the many things we take for granted as parents. Your child just figured it out, naturally. One day they can separate their finger from their hand and voila! They can manipulate things. Reese has been sneaky, clever really, in how she has gotten around her limitation. But now she has achieved a new milestone because therapy saw the repeated use of that finger and that means it’s no longer an accident. Add that to all her intentional eye contact and expressive nonverbal communication and we have had a monumental two weeks. Hooray!

Continue reading Pointer Fingers and Personal Connections

Get Out Your Pencils!

It’s been a good week. Super hectic. Crazy, really. But, still great progress for Reese, so it’s a winner in my book. 

To be brief, Reese has shown some real mental strength and focus this week. It’s an amazing feeling to witness her little breakthroughs — lots of pointer finger work with the left hand, length of attention has expanded, deep personal connecting, and a little bitty step in advanced reasoning. 

On top of all that, we’ve grown! It’s hard to tell in pictures just how small she is I think. You probably forget, like most people, that she is nearly 2.5 years old. She looks like a small 12 month old.

  • She weighs 21 pounds now, (last summer she was a beefy 26), here’s hoping she plateaus and doesn’t lose any more.
  • We’ve moved up a shoe size, officially in toddler shoes now, and not infant soft-soled ones. 
  • And my favorite!!! After standing at 29 inches tiny for 15 months, she’s tacked on two, TWO, inches! Time to mark the walls. This girl is going to wear out our pencils.

This is presumably because we’re down to a very small dose of steroids allowing her body to start behaving normally and maybe realizing it needs to kick it into gear and start taking care of her. 

And I have to share, we had a super great wrap up to our therapies today. She communicated her need for water using our picture book we have made. She might as well have won a Gold Medal in my mind! Thrilling!! She also is grasping “cause and effect” more and more. She pushed buttons on a book with sound effects. This is an imperative skill to get to understanding things like “NO.”

But above all, she is just connecting and showing her sweet little self to everyone she is with. I know they feel it, too. Her expressions show this amazing appreciation and love in her eyes, and I know we all can’t wait to see what she has to say when she’s ready. 


Our Definition of O.K.

Reese has had a great day — therapy and music class went well. (Video posted separately.) She made eye contact, and I think, even tried to imitate a friend when we were dancing. That stimulation comes home with her and she is a happy girl. She is someone who wants to make eye contact with her big brother and it was so sweet how she was smiling at him. They had a nice lunch together (normally she is napping), and Davis was so fulfilled by that 3-5 minutes of deep connection with his beloved baby sister. So it’s a high for me, for now, but there’s always more than what you see on the surface, right?


If you ask us, we will tell you she is O.K., or things are good. And on the surface they are. Reese is out of danger with the ear infection, for now, and in general she is back to herself. It takes several days after that many seizures.  Aside from this sick episode, you no doubt have seen lots of happy pictures. I want everyone to experience her smile and know the littler person that she is becoming. But those moments are probably fewer than you realize.… some days more and some days less.

If I were being really honest I could share all the terrible faces she makes, where we just wish we could tell what she needs. Instead, I will just explain a few things…

1. She whines a lot. When she isn’t smiling, even sometimes when she is, she makes these sounds that we interpret as whining. But maybe it’s not meant to be a show of frustration, it’s just her preferred sound. Who knows. But it can really grate on your nerves after a while.

2. She grinds her teeth when she is awake. It seems to be when she is tired or upset, or maybe related to her ears, but good lord it’s insane how loud and spine-wrenching it is. We have tried to recreate the sound and it’s not even possible. Will be so glad when all those teeth are in.

3. Her attention is limited, so entertaining her with toys is always a challenge beyond five minutes. She wants to be held, or walking, or moving. She has sensory input issues and she needs more than most kids. She wants to be touched, and she wants to feel so she rubs things, puts things in her mouth and even pinches and scratches herself or us.

4. And then there is the bed time routine. For some reason, ever since the first round of surgeries, she has had issues falling asleep. She used to be so good at going to bed on her own. It seems because of her sensory issues she has a hard time self-soothing as well. Some nights she is calm and happy, just not sleepy. Most nights though, she is fidgety and restless and frustrated about not being able to fall asleep. She wants to, we can tell, she just has forgotten how for some reason. Bath time does help matters. It’s torture for her when we wash her hair, so then we comfort her until she stops crying and that basically goes straight into 1.5 hours of laying with her in our bed, sometimes walking with her, bouncing her like a newborn, and singing or talking gently in her ear.

So yes, she is doing well, as well as can be expected, and we are still working on what to do next for her. But honestly, her O.K. is never going to be what yours or mine is. It’s just another thing we have changed to get used to whatever is normal for her. Just thought we should be transparent and that some would like to know what the day-to-day is really like.

Getting Spoiled

Someone is really spoiled. Since we got home from brain surgery, she’s been sleeping in our bed parts of every night for obvious reasons. Now she seems to have decided she should start out here and save us all the time of getting up.

And the guilt kicks in. I’ve held her down and let them do terrible things to her. Of course she can sleep wherever she wants! Can’t deny her snuggles with mom and dad, now can I?!!!!

Overall though, it’s been a great couple weeks. Staples came out last Tuesday and it took me two full days to work up courage to wash her hair. Even after getting used to touching staples, her raw, open skin again made me squeamish. We both cried a little but we survived.

Doctors decided to get some blood work done to see how she looks between surgeries. Poor lab tech hadn’t even heard of two of the tests they wanted. So after 6 vials (24ml of blood drawn) and double checking on the Internet, she still managed to miss one. We head back in the morning to make R suffer again. Sigh.

Therapists are all pleased with her post-op progress and everyone who knows what they’re talking about says her scar is healing. So we are just going with the flow right now.

Holding and biting a cracker is such a big accomplishment for this little lady! And to keep nibbling at it makes her look like an average little eater. Yay for graham crackers!