pre mature

Category Archive: Therapy

Apr
12
2012

EASTER 2012

IMG_8704

This Easter I wanted to do something special with Amanda as last year she was only 8 months old and we did nothing Easter related…she still doesn’t know what’s going on but she does enjoy much more activities.  Actually, last Easter I was sad I didn’t do any Easter stuff as I feared she wouldn’t …

Continue reading »

Mar
20
2012

SOME GOOD AND SOME BAD

Right before going to the social area...

Since last post there has been a lot going on, good and bad,  and I have been very very busy and most of all tired.  Amanda’s nanny had knee surgery and will take a month and a half off; it’s only been 2 weeks and I am already missing her and her help so much!  …

Continue reading »

Mar
10
2012

A FEW FIRSTS

IMG_8433

Amanda got her first haircut.  Her hair wasn’t really long but I am a believer that if you want it to grow you need to trim it, plus it was pretty uneven in some places.  She behaved really well through the whole process and the end result is super cute.  She looks a little bit …

Continue reading »

Feb
18
2012

AMANDA HAD FRIENDS OVER…

Playing before bedtime.

On Valentine’s Day Amanda had three friends over: Valentina, Gretel and Teacher Maecy.  She sat in the living room patiently waiting for them and when they arrived they had a blast playing with maracas, plastic eggs and many other fun things.  At one point either Amanda, Gretel or Valentina cried, after all, they are kids/babies!  …

Continue reading »

Feb
07
2012

Amanda’s Updates

Helping to bathe Amanda

I’ve been quiet for a few weeks, but there has been a lot going on with Amanda.  She visited her pediatrician and pulmonologist and they both were very happy with her health this past few months.  Her pediatrician says he’s staring to believe that the AA diet is giving her more strength because he saw …

Continue reading »

Jan
09
2012

Therapies…

Sitting, no Bipap!

Amanda has been getting Physical Therapy Monday to Friday in the mornings since she was 3 months old.  We think this has really prevented her from getting contractures, especially in her feet which is where most kids with SMA get them.  Contractures is what the word ‘atrophy’ in SMA means; when muscles and joints are …

Continue reading »

Dec
10
2011

Theater, Therapy and More.

With Maecy's present :)

When I was in high school Steps, the dance school I went to, was my second home…even after high school and even now I still go there for different reasons.  This year they celebrated their 25 years and the theme for their end of year presentation was The 25 Years of Steps.  They invited alumns …

Continue reading »

Oct
03
2011

Amanda’s updates are back!

Holding hands with Valentina

I haven’t posted in a while and some of you are already asking about Amanda.  It is nice to know people care and actually read what I write.  I have been a little bit busier than usual that’s why I hadn’t had the time to update.  Juandi and I went to New York City for …

Continue reading »

Sep
17
2011

New and exciting things for Amanda

IMG_6530

This past week Amanda experienced a lot of exciting firsts.  She started using her tumble form chair, hand painted with teacher Maecy, and played with her new switch adapted toys.  It is part of Amanda’s therapy to try to sit down and stand with the help of special chairs and standers.  Sitting and standing are …

Continue reading »

Aug
13
2011

Lately

IMG_5953

I will post details pictures and videos of Amanda’s birthday on a different post.  Now, I will update on the stuff she has been doing the last couple of days. Holding an SMA baby/kid can be challenging because their heads need to be facing to the sides so they don’t choke on their saliva, and …

Continue reading »

Older posts «