pre mature





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!  Amanda became upset mainly when Teacher Maecy’s attention wasn’t 100% on her but overall she had a good time and it is important for her to socialize and learn how to share.

Playing with my friends


Amanda’s super cute and considerate cousins also came over to give her Valentine’s Day gifts.  They got her a book and a stuffed animal.  Victoria is such a loving and sensitive girl; she loves to come and read to Amanda.  She really really wishes Amanda could speak and walk someday; she asked me if she would and I said “probably not, but she is really happy and loves when you talk, read and play with her”.  She just looked at me and kept playing with Amanda’s hand.  The other day she noticed how Amanda moves her wrists and she said that Amanda just needs more practice to be able to move but that she will.  It is difficult to explain to kids why Amanda is the way she is and I imagine it is really hard for them to understand why.

Thank you cousins!!

This week we’ve had a few uncommon situations with Amanda.  Wednesday almost at dawn I noticed her respiratory rate was super fast while she was sleeping.  We called her pediatrician and he advised us to nebulize and suction her.  We also added a round of cough assist.  Poor thing woke up with a smile and then did not want to go back to sleep.  After speaking with other SMA families it was probably the Bipap thinking Amanda was triggering a breath when she wasn’t due to her mask being too small or not placed correctly.  We have also noticed some rumbling in her lungs that goes away when we move her.  And yesterday we heard something stuck in her throat, I immediately grabbed Bipap and could see she was already not breathing.  Even with Bipap she wasn’t breathing which really scared me because for the past few months we have managed to keep her from desaturating by using Bipap right away.  I quickly suctioned and she recovered.  She was sweaty and tired from the episode.  Then, just a few minutes later she started to choke again while on Bipap…this is not good.  So we did a round of Cough Assist and suction.  At night we noticed her scopolamine patch wasn’t there so that might be the reason she was having so much secretions.  She has been o.k for the rest of the evening but we will watch her closely and hope nothing else happens.

Looking so pretty!

Playing before bedtime.

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