The swim lesson was a success!  It’s very much occupational therapy focused and this teacher knew what she was doing.  Lily was initially over-excited when she got to the pool (maybe it was the peepee potty dance/song I sang to her after her successful potty visit, or the acoustics at the indoor pool, or seeing the pool, or a myriad of other unknown reasons).  She was chirping and babbling REALLY loudly.  And once she got in the water, she was thrashing around (in a fun and happy way) as her senses were all over the place.

To calm her down, the therapist did some slow spinning with her in the water and then put light weights on her hands and feet.  Zen-like focus ensued for the rest of the hour.  She was kick-kicking (like she learned to do at Grandma’s pool) and walking on the underwater trampoline – a complete natural.  The therapist was impressed that she is so strong and comfortable in the water.  They did some strengthening exercises while Aileen (the therapist) sang ‘wheels on the bus’ to L.  Everyone had a great time.

Who knew that St. Barts on Park and 50th had such a great indoor pool?  I love the restaurant (it’s a beautiful spot for a sunny day).  We will be going back.  For pool.  And lunch!

A complete natural in the water, and totally calm and happy afterwards too!

I guess I need to get used to them when it comes to Lily’s development and growth. But it’s disheartening when she’s unable to do something she was previously doing the week before. It will come back. It almost always does. But my heart breaks for her that she has to struggle like this.

Her word approximations weren’t so great last week and her fine motor skills have waned a bit too. But even though she’s having these slight regressions, she’s still progressing in so many other ways… For example, she’s a natural at potty training ; she did peepee potty the first time she was put on the toilet! She also gestured (with her hand) to have me move closer to her face so she could give me a kiss! This is the first time she’s gestured that ‘come here’ movement; something we all take so easily for granted. For Lily, she did it twice last week and I was dumbstruck both times.

Tonight she is starting swimming lessons. Actually it’s aquatic therapy which was highly recommended by the Rett specialist. We are both hoping it will be a fun time!

More soon.

C and L

For the momma, the week started out at a conference in Chicago. Twenty-four hour business trips have become the norm for me (at least when traveling within the US; when abroad it becomes a 48 hour trip). I presented a case study on how the Company I work for responded to Superstorm Sandy from a humanitarian perspective (if you ever wondered what I do for a living, click here for our report: http://www.mmc.com/citizenship-report/).  I was back in Brooklyn by Tuesday evening.

For Lily, she started out with her usual schedule of therapies and naps and more therapies. She has been having a great week of word approximations and physical strength. BUT – the dreaded raspberry blowing has returned. O la la. Not fun. We are working to curtail this.

Yesterday morning we visited another preschool; Lily walked around like she owned the place. She was walking up to kids and adults, giving ‘Lily pats’ and even some kisses to a few lucky souls. All the teachers fell in love with her.  How could they not?!

Today (Thursday) has been a ‘normal’ day for us (back-to-back meetings/calls for the momma and back-to-back therapies for the L-bug). Tonight we will rest up for an extra busy weekend.  Tomorrow morning we go to the hospital (Montefiore in the Bronx) for an appointment with the GI doctor at the Rett Center and then we get admitted for yet another 48 hour EEG. So if anyone’s in or near the Bronx this weekend, stop by!

Wish us luck for this weekend.

Xo,

C and L

Resting up for our weekend vacation at the hospital

Holy shit.  And I mean shit.  (Sorry for those of you who are faint of heart.)

I thought getting a cat (not a kitten, but a full grown cat who is friendly and warm) would be a great companion for me and for Lily.  So we tried it out.

Kitty lasted two weeks.

No, no!  He didn’t die.  I just returned him.  You see, I had agreed with the woman who gave/lent him to me that I would foster him for a while to see if it would work.

It most definitely did not.

Why is this cat sounding more like an article of clothing rather than an animal?  I’m really not that heartless.  Believe me.  It wasn’t an easy decision to make, at first.

It clawed around in my head the first few nights (as he clawed my sofa and rugs)… maybe I wasn’t up for this?  Maybe a cat isn’t as low maintenance as I thought?

But then I’d think… he’s so SWEET.  Look at him, licking my face (ick) and rubbing up against my legs (as I’d trip over him walking down the hall to make my morning coffee).  The woman who gave him to me was right; he does act more like a dog than a cat.

And then I’d come home from a long day at the office to find kitty litter all over the apartment. I’d be down on my hands and knees cleaning up after him, muttering that this is not how I want to be spending my free time (like I have any free time!).

But then I’d look at him and say… he’s so SOFT!  And it’s so nice to have a soft, sweet little guy around to keep me company when Lily’s not home with me.

What finally made my decision an easy one was this: Kitty has IBS.  Like major diarrhea ALL THE TIME.  And it just so happened that a few times, L and Kitty decided to poop within a few minutes of each other.  I’d be finishing up cleaning one mess just to have another await me.  (At least L wears a diaper so it is somewhat contained.)

The first time the 1-2 poop punch happened, I tried (TRIED) to laugh it off.  But it happened one time too many (once is one time too many I think).  That was quite enough for me.

So bye-bye Mr. Kitty.  I won’t miss you licking my face in the middle of the night.  And Lily probably won’t even notice you’re gone.

This was about as close to Kitty that Lily wanted to get.

It’s been a week since we left the hospital and we are both still excited and relieved to be home!!

Lily’s been doing great. The steroids have made her sleepy and she does have roid rage from time to time (which is scary to see – especially when it’s an almost 3 year old) but generally she’s been responding well to it all. So far I’ve noticed her nonverbal language improving (her hands go up when I say ‘up’ for example) and her motor skills are better too (she’s bending her knees when she walks!). But no marked difference in verbal language. Yet. Docs said to give it two to three weeks.

We have a follow up appointment on Thursday with the neurologist to check in.

I’m still not thrilled at administering the daily shot but I’m getting good at it. Lily is the best patient ever. She never cries when she gets it.

I still well up 😦

Sending love to all. And please keep the prayers and positive vibes coming our way.

(These were taken earlier today. Her cheeks have gotten pudgier but she wears it well!)