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Christmas 2011

Since we put up the Christmas Tree and the Christmas train this year we tried to take Amanda every night to see it and enjoy it.  Last week, we wanted to take her but then after her therapy she seemed tired and irritable, so we couldn’t do it as much as we wanted to.  On Friday we started antibiotics for a possible ear infection (it wasn’t infected yet, but it had some fluid and since she was not herself her Dr. decided to start them, and she is doing much better now).  So this week, we will try to take her to enjoy it a few more times.  Juandi and I really don’t talk about it, but I know we both think this might be our last Christmas with Amanda and that, along with making us feel sad, puts pressure on us to make it super special for her and for us.  So we take pictures, take videos, take her to see lights, to see her train, etc, etc.  When she does something special or there is a special moment and I didn’t take a picture of it, it really gets me down, thinking I might not see a moment like that ever again.  The same happens with her smile, a lot of SMA kids lose their ability to smile eventually, so I try to capture her smile over and over again, and when she doesn’t smile that much I worry so much that she might be losing it and I don’t have enough of it in pictures.  Her smile is definitely  not as big as it used to be, and that just kills me.  I don’t even want to think about the day she will no longer be able to smile…that will be hard, really hard to accept.  But I am rambling, so back to Christmas.

For a few months we have been debating what we would do for Christmas.  On the 24th we usually go to my sister in law’s for a small buffet dinner and then to my aunt and uncle’s house with all of my dad’s side of the family, which is a lot of people.  On the 25th we go to my parent’s house and stay there most of the day.  This year, we didn’t really know how we would make it work out.  So the original plan was to take Amanda to my sister in law’s bring her home and have her stay with her nurse while we went to my uncle’s and come back at around 11pm when the nurse had to leave.  But that day, the night nurse said someone could pick her up at 9pm so our plans had to change.  We decided to put her in her PJ’s and take her for a little while.  Even though she arrived there asleep everyone had a chance to see her.  She woke up with the noise so we came back home at around 11pm and she fell back asleep at 11:45pm, so thankfully she wasn’t up for the fireworks which would have not let her sleep!  Comparing this Christmas to last, it is incredible how much has happened and how much SMA has taken from Amanda.  Last year she was not hooked up to any machines, she had already had her Gtube surgery but was feeding by mouth, and we had just started to use Bipap.  She could be held, she could move her arms and legs, she could fully open her mouth and she was able to make noises.  All of that is pretty much gone now, and it stinks!

Posada 2010

Christmas Eve 2010

Opening presents 2010


At my Godmother's!

On my way to Christmas Party in my Pjs

On the 25th we opened presents and headed to my parent’s home where she opened a few more presents.  We got her the Cookie Monster and the Dora Bubble Car which are switch adapted.  She wasn’t as thrilled as we thought she would be, but we will try them again and hopefully have a more happy reaction.  Perhaps she was like what on earth are we doing here, this is time for my therapy and TV!  She has a super strict routine and not following it, I think, might make her feel strange.  At my parents she opened two books that my brother got for her, and those were the hit this Christmas.  They open up and have so much to look at that she couldn’t keep her eyes off them.

Opening presents

With my aunt Marta was singing and playing with me!

On the 26th we went to see a parade from a building that is located right in front of the parade’s path (Juandi’s aunt, Mariela, and her cousin, Meli, live in that building so it was perfect).  Meli reserved a room and had some snacks and Amanda had a great view.  I thought I would be able to get out of there as they had informed that some streets would remain open, but what we didn’t count on was stupid people parking in the street and blocking the access out.  There was also a ridiculous amounts of cars and people.  Thankfully I had brought her food and I just pushed her therapy for later when we got home at about 9pm.  At one point I worried that if we had an emergency we would be in trouble, but then I thought that we were most likely not going to have one and just relaxed…we had everything she needed with us, so we were ok!  We went to Tia Mariela’s apartment and stayed there until the streets had cleared out for us to leave.


Waitimg for the Parade to begin...

Front row seats, thanks to my aunt Meli Lara!!

Falling asleep halfway through the was moving very slowly...

Chilling at Aunt Mariela's


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  1. Elida Nader says:

    Hoy lei en la revista del Banco General la historia de Amanda, ella es un Angel, es hermosa y tiene a unos padres jovenes, bellos y maravillosos.
    Los felilcito por compartir este milagro de amor, no dejen de tener fé en Dios, es el unico que nos da la fortaleza necesaria, y esperanza.

    Dios los bendiga, y para esa preciosa bebé, que ha llenado su hogar de feliciidad y amor, un besito y aunque no los conozca, se que su historia servira para que muchos otros coon casos especiales, sepan que para Dios nada es imposible.

    Desde David con respeto y admiracion

    Elida de Nader

  2. mvallarino says:

    Muchas gracias, un abrazo!

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