What's Up with this Blog Lately?

I have so many pictures to post, so many things to share, but I feel like I can't keep up!
Adel's mini hair trim, a very special and fun Chanuka get-together, the rest of the Chanuka photos to post... and even a small but exciting change to tell everyone about (although in my procrastination, half my readers already saw that change )

But I can't seem to get up on my feet.


My blogging seems to go in cycles.
I fall flat...


...get back on my feet and send out post after post...


Right now I'm kinda... not on top of things.

I was planning to sort all of December's photos by topic, write up a dozen posts and post-date them all. I was gonna get back on my feet. But I fell flat. Literally. On my bed, next to Adel and took a 4 hour nap. And now I'm up at midnight. Up- yet not up to real blogging.

But I really will try to get back on my feet really, really soon!

The Things that Can Make a Mama Cry

So here is Adel's famed "up" trick!

She does it pretty well once she gets into it. You can see for yourself that I have to play her up and repeat it a few times before she lifts her arms.
But today during Adel's special ed therapy session, the teacher was playing blocks with Adel- helping her stack, asking her to bang together. Usually she has to do everything hand over hand, but this time she only helped her stack the blocks. When she said, "Bangy bangy bangy," Adel picked up two blocks and banged, without a moment's hesitation. And when the therapist said, "Blocks go up," Adel stopped banging and lifted the blocks high!

That's two consecutive verbal instructions that Adel followed without being asked twice and without being physically directed!
The therapist was so happy and cheering Adi on. I, on the other hand, had to grab a tissue and leave the room.

And as a bonus, here are Adi's perfect clavicles and humerus:

I just got the image results- here are two of the better shots. Gorgeous, aren't they?

The Post in Which I Get All Philosophical

Some things I realized:

People who have kids with special needs sometimes talk about having to let go of their (pre-diagnosis) child and accept the "new" child. I always shudder when I read that. Hello, it's the same child! I guess when parents have many dreams invested in him or her and then the dreams dissipate, it is hurtful. And when they mourn the lost dreams, they feel as if they are mourning the child of their dreams.
For me, I find it more comforting to remember- the day Adel was born, she was the same sweet girlie as the day I was told that I must go straight home and call a geneticist, neurologist, early intervention and more. She was also the same baby when the words "Cohen" "Angelman" and "Prader-Willi" started flying around (regarding my daughter, no less!) as when she melted my heart with her first smile at 4 weeks.

That being said, as each realization creeps up on me, I can't help but feel some disappointment.
The first time someone asked me what school I plan on sending Adel to, I happily discussed all the options, the pros and cons of each one... but the next time someone asked me the same question, I froze, realizing that unless some miracle occurs, Adel won't be attending a mainstream school. So I superficially discussed the schools, feeling kind of empty inside.

When I was pulling out the kids' snow boots from storage last week, I chanced upon these (scroll to the bottom of the post) :

The boots I bought for Adel last year with the anticipation that she'd be walking this winter. And even if she'd be "late" like Zusha was (14 months) she'd still have plenty of snowy days to make good use of these.
Does anyone want to buy super cute new boots from me? Adel won't be needing anything with a hard sole for a while.

This reminded me of a few other purchases- shoes for next summer and panties. Yes, panties. In size XS. Children's Place had them for $2 a pack last winter so I bought two packs. Zusha was using the bathroom shortly after turning two (we won't discuss Mr. G!) so I got panties for Adi in advance. I have no idea when I can begin toilet training Adel. Without a diagnosis, there is nothing to help predict that. Maybe I'll use them as diaper covers. Hmmm...

Something else I realized: when my friends were dealing with separation anxiety with their 7-8 month old babies, I kinda sighed with relief that my Adi isn't scared of strangers, stays nicely in one room while I do things around the house and happily goes to other people. I didn't have clinging issues when visiting people and all that. I was very grateful for being spared the more unpleasant of the milestones.
Except that I wasn't. Separation anxiety just took its sweet time in coming. Now when most babies Adel's age are just about over it, Adel is getting the memo- that Mama can't be allowed to leave the room. No, she can NOT!

Another thing that makes me kinda sad is seeing the grey soles on Adel's footie pajamas that she has from her brothers. They were walking at this age, dirtying up the pajama feet. So here's another subtle jab- your life's totally different now! So there!

And then I feel like jabbing myself... I mean, if I get these little reminders of my new normal, might as well take it to the full level and go watch videos of Gedalya when he was Adel's age... (did you know Gedalya was able to jump with both feet off the ground at 12 months? O.O ) and read about all the cool things he was doing and his vocabulary of about 30 words.

But it didn't make me feel wistful or anything. I'm content with Adel's development as it is. Instead, I like to focus my energy on celebrating the little things.
Such as her last week's accomplishments...

She transitioned from lying on her back to sitting by herself- on the hard floor! The first time of many, IY"H! She also rolled over from her back to her stomach once on the hard floor about a month ago. She's a pro at it on the bed, though!
Also as of last week, she has been following instructions and answering questions.

Me: Adi, UP
Adi: Uhhh
Me: Up
Adi: Uhhhh
Me: Up
Adi: (Lifts arms!!!) Uhhhm! (Smiles with all her teeth in a row and her whole face scrunched up and claps for herself.)


Me: Adi, what does a ketsele say?
Adi: ...
Me: A ketsele, what does it say?
Adi: ...(Lifts arms) Uhhh... (Smiles apologetically.)
Me: Oh, Adi, not "up." What does a ketsele say? A ketsele says mmm...
Adi: Miam!
Me: Yay! That's right, "meow!"
Adi: (claps)



We have our ups and downs, but this is our ride and I love it!

Therapy Updates...

My little Adibear

has been doing great in therapy. She's been making the greatest strides in physical therapy. While she hasn't really reached many milestones (besides for transitioning to a sit from lying position, on the bed only) she is much easier to work with. She doesn't cry or resist as much, spends much longer in (supported) squat and quadruped positions, and her muscles are much looser and able to be placed in different positions with ease.

Notice the position of her legs in the photo above. She wasn't able to do that a month ago. She'd sit with her legs sticking straight out. Now she keeps this position when I or the therapist place her that way. She also might get into it herself if she is trying to reach for a toy just out of her grasp.

*****

Occupational therapy is one of Adel's favorites. This therapist plays her up the most, and she loves the huge ball! I bought a ball to keep at home, so the physical therapist uses it as well, making those sessions that much more enjoyable.

Adel pulled that duckie all by herself! It's one of those toys where you pull a string and it vibrates. Her strength in some areas just astounds me.

The OT brought this fun tunnel to swing Adi in. Swinging is supposed to develop muscle tone. Slow swinging lowers it and fast swinging tightens it. I did not know that, but I did know that Adel had a great time in it!

*****

Adel is also advancing nicely in speech therapy.

She mimics sounds (only the ones she can already say, like m, ah, eh...) and she can mimic intonations exactly! She can even understand some requests, such as to lift her arms.

*****

Special ed...
The teacher told me that Adel already knows stomach, eyes, mouth, fingers and toes.
I was surprised, since Adel doesn't show me when I ask her to.
And in actuality she doesn't exactly know what the names of the body parts are. It's more like she recognizes a chant and remembers to wiggle her fingers or drum on her tummy. But it's a step because we will wean her from the association to understanding that this word means this part of the body.
They also want to up the sessions to 5 times a week.
Yikes!

Baby Rights

In the mornings, Zusha goes to cheider with his Tatte.


And Gedalya gets Adibaby all to himself!


Zusha can be a little-sister-hog sometimes.

He does not like to share his baby sister!

And I can't say I blame him. Would you share Adibaby with anyone if she was your baby sister?

I thought not.

Whenever Gedalya gets Adibaby all to his little self without having to fight for her, he is happy as can be!

What We Did Last Monday

Last Monday we woke up bright and early, got dressed, I slipped Adel into our awesome new Ergo and off we went. Over the river and through the woods, on subway stairs, train, and a really cool Manhattan bus with an accordion middle (it's too long and has to bend to get around corners. We sat right on the bend because I thought it was cool!) to the geneticist and neurologist we went.

Adi even napped in the Ergo. Next time I won't even bring a stroller along. All I used it for was to carry my GAP purchases! LOL.

(sleepy darling)

The geneticist asked us some questions and then took blood. One tube for Cohen syndrome and one for Angelman and Prader-Willi syndromes. Adibaby was a trooper and only cried a little when the needle went in and then when it went out. She was white as a sheet for a few hours and slept much more than usual. We'll have the results in mid-January.

Since the appointments were four hours apart, I had done some research the night before to find a kosher place to eat, some stores and a park.

It was a beautiful day. I was even able to get a few photos without a coat!

Adel had a great time in the park, playing one-on-one with Mama for a change.

We walked around town, taking in the sights, looking like tourists.
Soon enough we headed back to NYU to see the neurologist.
She gave Adel a full physical exam.
And this time, there were reflexes in her arms!
Still less than the legs, but WOW! From nothing to something is awesome.

I showed the neurologist some videos I took of Adel. She does a weird jerking movement when she is tired and upset.
She kinda spaces out and her breath becomes short. Her fingers wiggle and her legs jerk up to her body.

So we will have to get a 24 hour EEG for Adel. That'll be in 2 weeks from now.

Then we headed home. I underestimated the distance to the train and decided to walk there instead of taking a bus. It was a mile and a half. I was already tired, it was getting dark and was wearing Adel... lesson learned for next time!

What We Did This Monday:
There are mountains of snow at every crosswalk, and it's impossible to get through with a stroller. But I really needed to get out of the house. I put Adel in the Ergo again and we went to the library without a stroller. It was very convenient!

Welcome, Winter

Goodbye, Autumn.

Goodbye light fall jackets.

Goodbye crunchy leaves.

Goodbye colorful trees.

Goodbye long hours at the park.


Hello winter!

Hello hats, coats, mittens...

And hello snow!

WELCOME, WINTER
Please make it a pleasant visit.

Let's Go {Paint} Shopping!

(All of the following is copyrighted by Zusha, age 5 1/2.)

"Hello! I'm Corny!" (Yes, you are, aren't you is what you all are prolly thinking now.)


My blog spot.


Excavator!


Fashionable zebra, whooo. (Zusha found a zebra print template on Paint Shop and spruced it up.)


Penguin!