Wednesday, August 28, 2013

It's been so long since I've updated.  June was a rough month with Ava being inpatient 3 times.  We switched up her home hypoglycemia/illness protocol.  We still have IV  D25 on hand for emergencies but we now have bags of D10 we can give to prevent admissions.  Let me tell you she hasn't been admitted since starting this.  Success!! Thank God for a wonderful medical team who came up with this new plan. J-tube feeds are still going well.  IVIG is still doing a world of good and we are chugging right along. :)  The school hired an RN for Ava and so far she's loving Kindergarten.  Our school does all day Kindergarten so we are doing half days.  She's not taking Gym class and got to pick her favorite special to take twice a week, she picked Art in place of Gym.  We really do love this school system.  They are great with special needs. 

 
(Christian fixed his own hair for school. Dude loves hairspray)
 
 
(My beautiful Dakota)
 
 
 
 
 
 
(Ava getting her new baby from Childlife while inpatient in June.)
 
 
 
(Snug seat Stingray - really like this chair, It does everything)
 
Dakota is on the 8th grade volleyball team and is still in drama.  She was recently in Shrek the Musical at our local performing arts academy.  I can't even tell you how proud I am of her and the wonderful young lady she's becoming.    Christian is my crazy-scare me half to death-son.  He is all about friends and sports and anything loud and dirty.  All boy.  He's in 3rd grade this year. Please pray for his teacher. ;)
 
 

Friday, May 24, 2013

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.
 

Thursday, February 28, 2013

Finally an update

I know I'm the worst blogger ever. I'm sorry. This blog has turned into a health blog about Ava and I really don't want that. I'm not sure what I'm going to do with it. With that being said, I've had a few emails asking how Ava is doing. She started her first IVIG treatment on Dec 6th and has been getting them every 3 weeks since. No admissions since December. She's back in preschool 2 days a week/3 hrs a day. She even started ballet class. She is still having her normal, chronic health issues but we've handled them outpatient. My girl will be turning 5 soon and we couldn't be happier! Christian and Dakota are doing well and growing up way too fast!! Dakota is turning 13 in April. Time needs to slow down!

Friday, October 26, 2012

Time flies

I try not to get too hung up on the Mitochondrial Disease diagnosis and what that means for Ava's future, but this week was hard. Our Mito community lost a beautiful young woman this week. It really brings things into perspective. I hate this disease and what it does to not only Ava but all children with it. Ava was also diagnosed with immune defiency 2 weeks ago. Hypogammaglobulinemia is the official name. She will likely be doing IVIG monthly now that we have the proof we need for insurance. IVIG is very expensive. We see her Immunologist on November 7th. Alpha Thalassemia is being tossed around a lot at her appt as another diagnosis. Her Iron levels have never been in the normal range. Ever. This is while taking large amounts of supplemental Iron daily. Truth be told, Mitochondrial disease is probably causing some bone marrow suppression. She continues to be J tube fed continuously 22-24 hours a day. She's on a combo of adult Vivonex and Tolerex. They are very high in protein and she uses the Tolerex when sick to help maintain glucose levels. (This last week Ava has had croup and her glucose has been dropping into the 30's on feeds, to give you an idea of what we deal with.)
Cincinnati Walks was last weekend. We were part of Team Tubie. Ava's shirt says "I can eat and sleep at the same time, what's your superpower?"

Tuesday, September 11, 2012

Homeschooling

Since my last post Ava has been admitted twice. Her special needs ped thinks it's time to take her out of preschool for a while. Ava doesn't handle illness well. Today is her last day. She will start home schooling with a teacher once a week. In other news, we are starting IV hydration at home during illnesses. She'll get D10 to keep her glucose stable. We're hoping this will keep her out of the hospital and at home where she belongs. Christian is loving football. He lives for it. I'm so glad he's found something he enjoys so much. :)