Friday, January 4, 2013

Happy 2013

I hope this finds you all well and rested after the holiday festivities.

May 2013 bring you all that you wish for, as well as health (most importantly), love and peace.

Our Thanksgiving - Zoé's 5th birthday - Hanukkah - Christmas and New Year's bash were wonderful and quite relaxed.
It felt good to stay home and enjoy the season. 

Zoé's big move was: a new room and a new bed. Since she is now officially a "Big Girl", we treated her to a new set up.

She is still working on potty training, but has gone to bed every night without a diaper, which has literally changed my life.
I haven't been missing the diaper aisle at the supermarket, let me tell you ;-)

We still need to work on "leakages" as she calls them when they occur. Life on Miralax (Laxative/stool softener) is not easy and little leaks happen.

Zoé enjoyed the holidays and is awaiting school to start.

She is still in full mode therapy: 

Speech x2/week: working on lip closure, oral motor stretches, bilabial sounds and a.r.t.i.c.u.l.a.t.i.o.n

Occupational therapy 1/week for 45 minutes as opposed to twice a week for 30 minutes.

Physical therapy: working on transitioning from floor to stand, walking up and down stairs, tricycle and ball catching.

Horse therapy: once a week at the covered arena, we  will start the next class in February (outdoors)

Choir: once a week, as our little soprano loves to sing

We still need to work on social integration and that will come in time. Zoé is still quite aloof when in a large group. She has a hard time being surrounded by big boisterous groups, which will be a concern next year when she goes to school and is in a class of 24 kids; but as I like to say, we'll cross that bring when we get to it.

As for me, I am now working which has been great, despite my physical limitations that occurred almost over night. It is amazing to see how my body has changed, my gait, and general stamina.
I am trying to be as active as can be, doing weekly pilates with an instructor and massages every other week.
My calves have become really weak and atrophied, so massages help for the soreness.
I try not to dwell on the situation despite the fact that I will have to get rid of all my beautiful high heel shoes. Not that I wore that many, I can no longer be on tiptoe!

Voila dear bloggers and followers, these are the latest news.
Next appointment: neurology department at Stanford's Lucile Packard Hospital for Zoé's annual neuromuscular clinic. Dr. Day, whom we adore is in attendance and always a wonderful advisor. I don't know whether I told you, but Zoé doesn't sleep with her AFO's anymore. She decided that she didn't need them. Her rehab doctor said it would help, her foot surgeon said it wouldn't change a thing.
Zoé had the last word!

I'll be back in school (college) in February for my last course on Early Childhood Education, after which I will have completed my 12 units required by the State of California to teach in a preschool or with young children. Loving being back as a student. The brain is slower but I love the challenge!

Many warm hugs and much love coming your way, wherever you are.
The Cake!

Hello there!

Loving those cupcakes

I'm singing in the rain

 my ornaments

Christmas cookies at our baking party

The Big Girl Room


Anonymous said...

Hi Sarah,
Really enjoyed catching up on all the news about Zoe and you. More photos please!

Loved the "big girl" room and I'll bet Zoe does too, especially all the little signs of love that surround her when she goes to bed at night.

May you all be blessed with a wonderful 2013 and Zoe's continued progress. She truly is a trooper and you are the very best Mom I have ever known!

xo Catherine

Mum without a clue said...

Coucou Sarita,
Great to hear the news & have a look at Zoe biggirl's world! Really wish I could see you & chat for hours & be able to give you a hand sometimes ... Much Love & Hugs to you, wonder Sarita, I hope you're ding ok.

Anonymous said...

Hi Sarah

I wish you a happy healthy and full of Love year 2013.


Michelle, Dallas and now Charlotte! said...

I just ran across your blog I also have a daughter just turned 3 and she also has MMD. I am unfamiliar with the PDD-NOS. I've been thinking about potty training as well and she is nowhere near so it's refreshing to know that most kids with this disease potty train later.
I also share the worries that you express as well. I am scared to death when she goes to school what the other kids will say about her walking funny and talking funny. There is nothing she can do to change these things it is what it is.
I love to look at your schedule and laugh because I also have a similar schedule and people just don't understand how much therapy these kids need just to improve a little bit. My little girl is in speech every other weeka and physical therapy every week! I was ecstatic to get her walking at 2 and 1/2 years. I share the experiences of helmets and casting and bracing as well. The first years are the hardest trying to 'mold' and 'fix' these little girls. They are so strong and such troopers for putting up with everything we have put them through. I want you to know you are not alone there are some of us out there but it's easier if we take it day by day and I cry often too we can share each others tears!!