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Monday, April 16, 2012

Struggle to maintain

Avery has had a rather rough week this last week.  Starting Monday she began to display some concerning behaviors which put us into a tizzy of sorts.  Her energy level seems to have tanked entirely and we find her less and less engaged in playing.  It could be effects of radiation and her low counts, although there doesn't seem to be any way to truly confirm it. On top of feeling tired, her allergies have kicked in high gear and she is clogged with mucus.  Of course a 3 year old can't blow her nose, so she spends all day snoring.  We took her in for labs on Wednesday and she hasn't improved since we left Memphis.  Her platelets are still in the 50's and her ANC has dropped down to 1100.  Her marrow has taken hit after hit after understandably its taking a long time to recoup.  We are nervous her ANC will not be high enough for the dental work she desperately needs done next week.  I guess we'll wait and see... 

We leave next Sunday for Memphis.  It's hard to believe its been 5 weeks already.  Besides dental work, she has appointments with the Endocrine docs to check on her levels, and ABR for her hearing check, and of course the dreaded MRI/LP to see if this radiation has done its job.  I have to say the end of this month is being dreaded as the anxiety builds for her MRI and then the following week we go in to the Perinatologist to check on the baby.  The fear that goes along with both situations is about all we can take.  Top on the fact that Avery is not acting "herself" and you've got a highly edgy mom.  Apologies in advance for short answers, no replies and "are you effing kidding me?" looks. 

On the bright side, Jersey has succumbed to the idea that tolerating hugs from Avery inevitably gets her more attention from mom and dad and she has apparently decided it is worth it.  Score for Avery.



  1. I pray Avery's appt next week goes well and there is NOTHING but good news!!!

    Love ya!!
    C.O.L.E.'s Foundation
    (Caring Openly, Loving Eternally)
    Sandy Daron

  2. we still think of you often and pray for you every night!! hugs. oh and we will be in memphis at the end of june if you guys will still be there.

  3. Keep it up trooper, Avery is strong!

  4. Hope to see you @ SJ next week, friend.