Rocking the boat

I’m a terrible blogger.  School is out for the Summer.  Dakota is an 8th grader, Christian is a 3rd grader and Ava in Kindergarten.  Dakota got a Presidential award For Academic Excellence for having at least a 4.0 gpa all year.  So proud of her! She’s trying to grow up way too fast! She’s auditioning for our local performing arts academy.  Let me tell you, she’s a natural! 😉

IVIG continues every 3 weeks, like clockwork for Ava.  J fed 22 hours a day and she finally grew a little.  She’s now officially .5 % for height (yes, point five percentile) and we are thrilled!  Almost to that 1%! Life is all about perspective. Weight is on the charts, but barely.  She’s following her own curve and that’s all we care about.  We had her IEP meeting for school next year.  Nothing kicks you in the gut like an IEP meeting.  In fact, my little sweetheart will have another meeting to prepare the staff for her before school even starts.  This meeting will include Ava, myself, school nurses, private nurse, principle, ALL kindergarten teachers (since they rotate lunch/recess duty), school psychologist, special education coordinator, her  bus drivers, teacher aides, Art, Music, Gym and Technology teachers, physical therapist, speech therapist, occupational therapist and whomever else they invite.  Ava obviously qualifies for OT, PT and speech at school.  The school is providing a one on one nurse for her.   The nursing plan has already been written up and faxed by her Dr.  Her Dr does NOT want them messing with her central line at all.  I don’t either. Glad we agree on this. 🙂

(Ava and her IVIG nurse)


(Ballet with Aunt Allison)

The crux is this.. Our school district only does full day Kindergarten.  ALL of Ava’s doctors say no-way can she do it.  Half days at the most.  It breaks my heart but I have to agree.  She’s stable now.  Nobody wants to rock the boat.  Mitochondrial disease is all about energy preservation/  She’s already sleeping 16 hrs a day.  Wearing her out at school will not help her.  Her disease could progress and she could start getting very sick again.  I seem to forget that she has been inpatient at least every 3 weeks her entire life up until 4 mths ago.  No rocking this boat.

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