pre mature

Category Archive: Playtime

Apr
12
2012

EASTER 2012

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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 …

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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!  …

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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!  …

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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 …

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Nov
07
2011

Halloween fun and more!

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I love how Halloween is the perfect excuse to dress up our little ones.  Last year we dressed Amanda as a cow and she looked adorable!  Looking back at those pictures I can’t believe how much she has grown and gone through!  Last year for Halloween we had just arrived from Baltimore and we hadn’t …

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Oct
18
2011

One scary day plus one frustrating day, but moving forward.

Yuck!

Don’t be scared by the title, Amanda is doing OK now and I want to start with the good stuff.  Last week was my mother’s birthday and the girls of the family celebrated with a lunch at my sister in law’s apartment.  The girls hung out together, we sang my mom happy birthday and we …

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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 …

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Sep
07
2011

Relaxing Weekend

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Amanda is still on antibiotics and not yet 100%, so this weekend she took it easy and stayed home for most of the day.  We went for a walk around the neighborhood and we put her to paint in her slings for the first time, she had a stomach ache or some kind of pain …

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Aug
04
2011

Old and new video

I was downloading some new videos of Amanda and saw some old really cute ones and wanted to share them. This one was in December when we went to Stanford for about 15 days for Amanda’s Gtube and Nissen surgeries.  Amanda was almost 4 months old.  It is shocking to see how much strength she …

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Jun
30
2011

Amanda being a little bit independent

With new dress mommy bought at Maroma

      Here are two videos of Amanda sort of playing independently.  She has more strength with her left arm and is able to move objects and play with the Ipad.  I was having some camera issues and so one video is blurry and the other was taken when she was already getting tired…my …

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