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Amanda’s Updates

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 her moving her arms and legs which she didn’t use to do since she turned 6-8 months.  Her pulmonologist said she feels the disease hasn’t progressed too much since October-November when she had to increase her Bipap settings because she was struggling to breathe when she was off Bipap.  We have noticed there is a trend with Amanda.  She is good and stable for a few months, then she starts to have bad days in which we notice the disease progresses and there are certain things that we have to stop doing; for example, holding her and going into the pool without Bipap is not possible now.  She can’t cry without her Bipap either.

It is a little bit funny when we go to see Amanda’s pulmonologist because Amanda knows she often takes her blood out and well, she isn’t her favorite person.  Last week we were waiting for her to arrive and as soon as Amanda heard her voice she started crying, she hadn’t even seen her!  I didn’t realize she disliked her that much…but later they made peace and Amanda managed to stop crying.

Now, to the updates:

Juandi and I had to travel for two days and both my sister in laws cooperated to stay each one night with Amanda and her nurses.  Amanda’s cousin, Ximena, stayed over too :)   Amanda’s aunt Marisol also came both days to keep them company.  It is awesome to count on so many people when we need help!

Ximena and Amanda

Helping to bathe Amanda

A good friend of mine visited us with her baby.  We took pictures of the girls, Amanda showed them how she played with the Ipad and we took them outside for a walk while we talked and talked.

Emilia and Amanda

I took Amanda to a Alessa’s 2nd birthday party where she showed off her new tooth, dress and bracelets!

Dressed up!

New tooth...ouch!

With teacher Maecy Amanda played with the maracas and painted a dog that I had bought for her.  I had tried to paint the dog with her but she wasn’t interested so I mentioned this to Maecy and she tried it.  Amanda really liked it and I realized the problem was the way I was painting it–following all the lines, making it super neat and cute.  Apparently, Amanda had her own agenda for the puppy; she wanted it messy and Maecy knew just how to do it :)


Painting MY way!

And again, Buenaventura this past weekend!!!

Marifer and Amanda watching TV

Matching swimsuits from Grandma :)

Moving my arms

Strolling around with Valentina

Ready for the pool again...

With grandpa and mommy

Daddy and me

Ready to go home :(

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