Tuesday, September 20, 2011

Alot of Updates with Pictures!!

Last week was a busy emotional blur.  We spent most of the week rushing around getting ready for the walk.  We made 40 something shirts, we made 40 something crocheted flower pins, we cleaned house, planned menus, grocery shopped, and kept up with all of the appts and meetings and such.
Eli had a decent week.  He was tired alot and had alot of O2 issues.  We were up alot messing with his CPAP and O2.  He ran low grade fevers alot, and had alot of temperature control issues with the goofy weather changes.
Friday evening our family and friends got into town.  We had a full house.
Saturday morning started early and we were at the walk by 8am.  It was amazing.  It was so awesome seeing other families and people effected by Mito. We met alot of great people and exchanged contact info!  It was just so surreal for me.
Our family and friends left on Sunday and we spent the rest of the day relaxing.
This week has been busy as well.
Ari started preschool yesterday.  She goes 5 afternoons a week for 3 hrs each day.  She had alot of fun and has already made some new friends.
Ben has been a mess.  His teacher is struggling with him in class, and we are having many of the same issues at home.  He and I met with the nutritionist and she's out of ideas.  he's being referred over to a feeding therapy team.  He also seems to be struggling with the medication change and we are all unsure what to do.  We are keeping in close contact with his doctors.
Jace is doing ok.  His meds are being slowly increased and he's done well with that but we still don't seem to be at the perfect mix.  He's enjoying school and has made some friends.  When he's not at school he's super busy at home with friends in the neighborhood.
Emily has been beyond busy.  She's in choir twice a week, strings (violin) twice a week, math club once a week, AND she was voted into Student Counsel by her class.  Top all of that with homework and violin practice and the book club she's participating in, she's always on the go!  She is enjoying it though and we are beyond happy about that.

Food.  We are doing well.  It's been such a huge change for our family.  We have been vegetarian for 3 months, and Vegan and Gluten free for almost 7 weeks.  We have found so many great recipes, and have been able to replace almost all of our favorite foods!  It's been quite the learning process for all of us, and we have all really had to step out of our comfort zone!  As most of you know this isn't the only household change we have made.  We are still going strong on cleaning supplies, no paper products, no disposable containers, etc..  We are super happy with the changes that we have made!

Bob and I are doing ok.  Life is hectic.  Like always it takes everything we have to keep going thru each day.  We struggle finding the balance of time, and rarely succeed with it.

Eli.. Eli is Eli.  It's always something.  He's still struggling with his O2 at night.  He alarmed over 2 dozen times last night.  He's still been running his low grades.  He's had a bit of a struggle with his change in feeds.  His Keppra (seizure meds) levels were barely within normal limits so his doc has again upped his meds.  I got a call today from our DME saying that they needed to bring out Eli's new BiPAP and get all of that set up.  I knew nothing about this.  Apparently his sleep study came back.  They thought that Eli was on O2 during the day as well.  I said no.  She said I needed to call his pulmonologist/sleep study doc immediately tomorrow morning.  I have no idea what is going on.  Eli has alot of appts coming up.  We meet with his neurologist, pulmonologist, opthamologist, his new AFO's come in, nutritionist, his main doc to discuss his anticoagulation precautions, and he meets with his wheelchair DME and PT to get his stander and gait trainer ordered.  It's alot going on and it's a struggle to keep up with it all.  It's so hard to see the progressive disease, progressing.  It happens so fast something and it's so hard to deal with.  They tell you it can happen, but when it does...it's just almost to much to bear.

this week is mitochondrial disease awareness week.  Our oldest 4 have been amazing for mito week.  They wore their team Eli tshirts on monday with their pins.  They also had a pocket full of Eli info cards to pass out.  All their own ideas.  We have all worn our Eli pins each day, and will continue to for the rest of the week!  I would like to share some things that have meant alot to me!
Mitochondrial Disease: Cunning, Baffling, and Insidious. Like any disease without a cure, it robs, it steals, and it ruins lives. It takes our infants from us, before we can even hold them. It puts too many angels in the grave, before they can even grow up. It robs a grandparent from being able to hold their grandchild. Mito robs a mother or father from being able to raise their children. Please make awareness, so that our world, realizes that we are not invisible any longer. ♥ WE NEED A CURE
Mitochondrial diseases result when there is a defect that reduces the ability of the mitochondria to produce energy.
As the mitochondria fails to produce enough energy, the cell will not function properly and if this continues, cell death
will eventually follow. Organ systems will begin to fail and the life of the individual is compromised, changed or ended.
The real cost of mitochondrial disease is not in money, or time spent in the dr offices. The cost is in the little ones that don't live to see their next birthday. The adult that has a stroke & can never hold their child again. The teen that has dreams to be married w/ a family someday & watches those dreams slip away through a hospital window. Mito doesn't care if you are male/female, race, age, or wealth. It will take you life. Please help us search for a cure!
In closing I will post a few pics from the last few!
Our team tshirts all finished!

my little man during a bad day of temp regulation

same as above.  just face closeup because i'm addicted to his little face!  :)

a team picture.  sorry for the glare.  it was that time of day. 

my little man at the mito walk looking beyond adorable!

eli with his poster at the mito walk

our front door decorated for mito awareness week.  and yes our porch light is green too!

Ari on her first day of preschool

one of our dinner ingredients (minus carrots, pecans and raisins)  turned out super yummy and colorful!

Eli with his brand new tubie baby.  He's laughing in this picture!  i love his laugh face.

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