pre mature

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Apr
02
2012

PARTY GIRL…AND SMA UPDATES

Over the last few days Amanda has attended two birthday parties.  She gets invited to lots and lots of birthday parties and as much as I would love to take her everywhere we still need to be cautious with public places and sick people around her, and we also need to think about how accessible the place is before adventuring.  This time she went to Valentina’s 1st birthday party–Valentina is Amanda’s first cousin and is only 7 months younger than her.  Valentina says Amanda’s name and calls her whenever she comes to our home or sees her from a distance.  She also went to a Pau’s and Charlie’s Circus Birthday Party where she had lots of fun.

With Valentina's Cake

Looking good.

With the birthday boy and girl...and their mommies :)

Juanmi and my possible mother-in-law :)

Posing!

This Saturday Amanda ran a lot of errands :)   First we went for lunch, where she was asleep for the most part, then we went to Felix where she got 3 DVDs and a scrapbook for her art projects ;) .  Then we also went to GDP to get stuff for Easter, only it was too crowded and she stayed in one place while I picked something out.  I wanted to avoid dealing with real eggs, but I guess the old way it’s still the way to do it.  I got her a bunny but will think about the eggs :) .  Finally, we headed to the ER where her pediatrician drew blood from her artery because her veins did not work last Thursday :( .  She wasn’t too happy but after a few snuggles and Nemo she forgot all about it.

Ready to go shopping!

Loving lipstick!

I also wanted to update on Amanda.  Even though she does not have a cold or any medical issues other than the SMA, she has some bad moments once in a while.  This past Friday as I had just left home her nurse called me to come back–she had turned pale again.  When I arrived she looked as if nothing had happened.  These episodes come and go, but they make it really hard to leave her because I fear that one of them might be fatal.  As careful as we are with her, this things can always happen.

SMA has been progressing and we have noticed that Amanda can no longer smile.  She tweaks her lips a bit and her eyes sparkle, and I know she is smiling but her smile is no longer there.  We always knew this was something that could happen but we really hoped it didn’t, or at least we hoped it didn’t happen so soon.  This has been really hard to realize and it breaks my heart…seeing her smile brightened my day.  It is the toughest thing she has lost so far and it really hurts us.  The more I think about it, the more it hurts, so, I try really hard to not think about it.  I wanted to write this, not to have a pity party, but for everyone who gets to see and interact with her to know it.  If you are speaking to her or showing her something, don’t give up because you don’t see her smile.  Remember her brain is 100% healthy and she enjoys everything a 1.5 year old does, so continue to interact with her even if you don’t see her smile, because in her heart, she is smiling.

Missing this beautiful smile so much!

: )

 

2 comments

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  1. Rodolfo says:

    Esta hermosa, un abrazo a los 3!

  2. Bea says:

    Marcelita, está hermosa Amanda. Con los huevos puedes abrirles un huequito en cada punta y soplas por una, toda la llema se saldra por la otra y los lavas de forma que te quede solo el cascaron. Puedes meterles algo mas liviano pero para que tenga algo de peso, harina por ejemplo y lo sellas con un pedacito de tape. Lo que pasa es que si no tiene peso al meterlos en los tintes van a flotar. Either way, aunque te vea a ti teñirlos va a ser fun para ella y luego puedes dejarla ponerle stickers.

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