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Amanda has been having high heart rate and tons of secretions since last Thursday but it wasn’t until Monday that she developed a fever and thicker secretions.  She had a tough Monday and Tuesday and still has a fever but yesterday and today have been a little bit better.  She is needing some oxygen at night and during her respiratory therapies.  We have had to change her schedule to do breathing treatments every 4 hours, day and night.  The last 2 nights she didn’t need treatments and she was able to rest a little bit more.  She is taking antibiotics, tylenol and cataflan and is in her Bipap 24/7.  This is the first time she has a significant cold and fever (Last year she had a mild cold) for such a long time and we were freaking out, but she is pulling through pretty well.

We are spoiling her more than ever and she has been receiving lots of love from her grandparents, uncles, cousins, nurses, nanny and of course us!  The secretions are clearer and have lessened, and even though she still has a high fever she is in much better spirits…we think we are almost getting through this.  This has been scary, but then I think about other SMA kids who get RSV or really bad colds and end up hospitalized and intubated and my heart stops.  I know that can happen to Amanda any time and it is a life threatening situation that is always in the back of my mind.  But now, she seems to be doing ok, let’s hope everything stays under control :)




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  1. Kate says:

    We are sending lots of love from California. Amanda you are a natural born fighter, we know that with a good amount of sleep and treatments you will knock this out on your own time. Sending lots of love to your parents.

  2. Ana Marcela says:

    Hola Marcela, I hope Amanda feels better very soon! Les mando un abrazote a las dos!

  3. Caro says:

    Que se mejore la princesa! Un abrazo

  4. Teresa says:

    Que Amanda se mejore muy pronto. Abrazos.

  5. Ana Peps says:

    Sending you lots of love and good vibes Mandy! Hope you feel much much better soon :)

  6. Tia flower says:

    Muchos besitos para Amanda. Vamos a rezar mucho por los 3 por aca.

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