Thursday, January 16, 2014

Happy New Year!

I've been wanting to knock out a post before the craziness of tax and consignment sale preparation take hold.  Actually, I still need to write Christmas thank you notes...

So a blog post it is!

Now that it is 2014 I am able to say it out-loud (or in writing):


Can I get a Whoop! Whoop!?

We may have to lead a boring, restrictive life at this time, but it is SOOO worth it!

Ella is still making good progress in her development.  This is such a blanket statement... what does it mean?

Ella is making progress to those who know her best (her mommy, nanny, family and therapists) and to those who don't see her often (friends).  

The progress wouldn't be noticeable to someone not invested in paying attention. 

Last Spring I was certain she was close to sitting independently...  she is still not sitting independently.  She can prop sit, shift her weight from one side to another (a bit) and even sit without using her arms, for 30 seconds to 3 minutes.  You just can't leave her unassisted for the moment she topples over without trying to catch herself.  

Ella's trunk strength has improved dramatically.  The connection between her hips and trunk is still not 100%.  She will now roll unassisted from tummy to back BOTH DIRECTIONS when she wants to do it (more and more often).  She CAN roll from back to tummy but is not motivated to do it yet.  A small queue on her hip will get her to fiip that way.  This is big progress in the last few weeks!

99% of the time I (or nanny) am on the floor with her.  The thing that is hard, but good for her is to get her settled on her tummy and walk away for a minute or two.  She gets pissed off and MOTIVATED to move!  

Ella bears weight on her hands & knees well with some support.  She has recently tried to reach forward and move her legs at the same time, but I have only seen this a few times in the last few weeks.  

We did just buy our first pair of shoes (SNEAKERS) to use with weight bearing exercises in preparation for standing/walking!  It's a long way off but the exercises to get there are well underway.  

Grasping/Visual Motor/Cognitive
Our OT just did a re-evaluation this week, she measured 7 months in Gross/Visual Motor skills.  Ella is much stronger on her left side than her right side.  The connection between her body and brain is stronger on the left.  Her hand has opened up on the left.  

Ella understands simple commands.  She knows what to do when you tell her to 'turn the page' and is just getting past the stage when all she wants to do is turn the page when reading a book (story, who needs a story when I can turn the page!). 

We saw the GI this week and he told me that while she is a SBS child he is now seeing her more for her oral aversion than SBS.  I was pleased to hear this because 1) she is making good progress with her eating and, 2) she is doing fabulous for a child missing a large amount of her intestinal tract!

We still struggle with BO (Bacterial Overgowth) which requires a routine cycle on/off antibiotics.   This is very typical of people missing their ICV (Ileocecal Valve - I still have to google how to spell that), the valve in your intestines that keeps the bad bacteria from your colon from going back into your small intestines.

Ella is doing a good job being open to new textures... adult oatmeal, baked potato, rotisserie chicken, yogurt, veggie sticks, mum mums, etc.  She still prefers Stage 2/3 baby food.  Her favorite changes every few months, currently it is Pumpkin & Spinach.  

I have been a bit afraid to introduce more foods for more reasons than I can't get into right now.  It's really difficult to figure out if a SBS child tolerates these foods.  After this last GI visit I feel ready to begin introducing more table foods. I'm just happy that she is open to new textures and chews (she likes to watch me eat something first).  

We actually shared a dinner plate tonight for the first time.  Rotisserie chicken and steamed Cauliflower!  And, of course, Pumpkin & Spinach puree.  

Ella still takes her bottle primarily, along with tube.  We continue to try a sippy/open cup which she will use, but not take a large volume.  We are going to reintroduce the straw cup to her... She has just started to take a bottle from Grandma and the nanny (anyone other than me) for the first time since last June - when she feels like it, that is.

I do not discuss this subject because if I do I PAY for it! Let's just say, I can't complain (unless I discuss it).


Ella is 21 months old.  On a Gross/Fine motor skill scale she's 6 - 9 months old (as best I know at this time).  Cognitively I believe she is a bit ahead of that.  

Her favorite (most consistent) word is 'hi'.  No is also a frequent word.  She still says 'ma' sometimes.  She says 'dog' on occasion.  She babbles a lot, especially if I am talking/on the phone (if the nanny needs to leave early and I'm still on a work call - she talks up a storm while I have to talk).  

I still use the infant tub to bathe Ella.  I'm looking into our next stage options.  I really think I want a bath ring although I understand they are controversial.  For Ella's needs I think it is the best option (better than a laundry basket or inflatable tub).  While I will never turn my back to her during bath time, I sometimes need 2 hands for 5 seconds (to get her conditioner or towel).  I just feel like a ring will be better for her as she can sit but not 100% unassisted.  Thoughts?

I'm still very dependent on our wonderful high chair.  I had no idea when I bought it (at consignment) how well it met our needs.  It has wheels on all legs that are 360 degree rotatable. I didn't realize how great it was until Christmas when I borrowed a high chair with wheels (turns out wheels were only on the front and only went front/back, didn't swivel).  

The high chair gives us both freedom to move around the house without me having to hold her constantly.  It allows me to bring her with me to run to the potty... to take a shower... to prep her bottle/food.  Think about it.  Otherwise I have a 21 month old child that I have to have a clean, soft surface to lay her on in order to set her down anywhere in the house!  I LOVE our high chair!!  

We went to FL for Christmas to visit my family - my first time back in 2 years, since I was 10 weeks pregnant!  Grandma flew up and made the trip with us, which made it MUCH better (26+ hours round trip)!  We had a great time playing on the new swing at Grandma & Grandpa's house.  We enjoyed having a few meals on restaurant patios.  Ella met many friends and family for the first time.  We even got to the beach, although the water was too cold.  

Our nanny has been with us for a little more than 4 months now and we still LOVE her!  I will attribute much of Ella's progress to her consistency in following-through daily with all of our therapy exercises. And she is as much of a germ-a-phobe as I am, which is nice to have someone here who "gets it". 

Grandma went in 2 weeks ago for minor bone spur surgery on her shoulder.  Recovery was supposed to be: 1) a sling for 24 hours 2) PT for 2 weeks.  Turns out their was a rotator cuff tear.  Recovery will now take months.  We are all thankful that she waited until after Christmas to have the surgery (surgeon wanted to do it before)!  She seems to be doing well with her recovery already.  She sees the doctor next week to map out her revised recovery plan.

I'm sorry I'm such a bad blogger these days.  Besides finding the time to blog, I have not found the motivation... I want to blog (I compose posts in my head every day), but I struggle with what to share.  This is Ella's story now.  I want to share, document our story and blog to help other micropreemie and SMC moms but I have not figured out how to do that while balancing Ella's right to privacy.  

Christmas Picture!

Christmas Picture - nice prop sitting, weight shifting!

The swing in Grandma & Grandpa's front yard!  Swing! Swing!

On the beach (with my 2 oldest friends), reading our favorite book.