Friday, September 7, 2012

Welcome Brookridge Families!!!

Today fliers went out at school!  I wanted to put together some basic information all in one easy place for you to read as you go thru the fliers and hear your kiddos stories of what they are learning next week during Brookridge's Mito Awareness week and fundraiser!
First our family would like to thank you!  The brookridge family is amazing!  Our kids are so blessed to be involved in such an amazing community that is willing to learn and raise awareness about Mitochondrial disease and so willing to fundraise and help the cause!
Secondly we would like to give the parents some insight into what your kids will be learning about.  Each morning there will be announcements with information about Mito.  Below is the Mito facts that will be given.  Each day there will be snipets of information about Eli as well.  I will post those details here on my blog each day.

Monday, September 10, 2012

·         We all have mitochondria.

·         They exist in nearly every cell of the human body.

·         Mitochondria generate 90 percent of the energy the body needs to see, hear, walk, and breathe.

Tuesday, September 11, 2012

·         Mitochondria are like tiny batteries within our cells.

·         Have you ever tried to use something that wouldn’t work because the batteries were dying?

·         That’s what a person’s body is like that has mitochondrial disease.

·         A new (healthy) Battery generates energy for boom boxes, cameras, and flashlights – producing light, sound, and photographs.

·         An old (sick) Battery has a lot of trouble making your things work.

 Wednesday, September 12, 2012

·         Damaged (sick) mitochondria can cause children and adults to have problems in making their bodies work.

·         Mitochondrial disease is NOT contagious, which means you cannot catch it by touching or being near someone with the disease.

·         It is a genetic disease, which means it is part of your family’s health history.

 Thursday, September 13, 2012

·         Mitochondrial disease is the body’s failure to turn food into energy. 

·         How can you help those with mitochondrial disease?

·         Tell your family and friends what mitochondrial disease is.

·         And, join the Tomkins family for a fundraising walk on Saturday, September 15 at the
T-Bones Stadium. 
The kids will have an opportunity to bring change (and bills or checks made out to the UMDF) to their classrooms each day and place it in their class buckets.  The class who collects the most will win a pizza party!
On thursday the kids are encouraged to wear green, which is the awareness color for Mitochondrial Disease.
There will be an Energy for Life walk here in KC on the 15th of September.  You can join our team as an in person walker, virtual walker, or make a direct donation to our team By clicking HERE
You can learn more about Mitochondrial Disease by visiting UMDF or MitoAction.  Also please feel free to contact us with any questions that you may have!

Lastly here are some pictures that the kids will be seeing to help understand a bit more about Eli's journey!
Our family is always wishing for a cure!
Eli's special bed that helps him sleep upright and safely.  Also his oxygen tank,  IV pole, and medical equipment required for sleeping safely.
Eli's medical equipment storage, and 2 fridges to store some medication and all of his IV fluids.  Shelving to store out of fridge meds.  And no little boys room is complete without a toy shelf!

Eli has to wear a special mask when he is in public.  This is not because he is sick, it's because so many others are carrying germs that they might not even realize that they are carrying.  Eli's immune system isn't strong enough to fight off things like a healthy person.
Eli in his wheelchair!  He's able to walk now but tires easily and isn't able to keep up in a public place.  This allows him to be able to move around quickly and easily, but is low to the ground so he can be close to other kids his age!
Eli with his O2 canulas.  He is on oxygen when he sleeps and during the day when he's having trouble moving enough air on his own.  They just sit right inside of his nose and tuck behind his ears.
Eli with his portable O2 tank.  It holds liquid oxygen.  We can refill this tank off of the large metal tank(seen in the bedroom picture by his crib).  This allows him to breath easier by giving him extra support.
Eli using a nebulizer with a mask.  This gives him medication that helps open up his lungs so that he can breath better.  His mask is in the shape of a dinosaur and some are fish.
Elis eyes aren't as good as most people.  One eye doesn't work very well at all so he wears a patch over his good eye each day to help his bad eye start to work more.  He always wears glasses to help him see.
Eli's ears don't work as well, and it is also harder for his brain to process what his ears are hearing.  He's able to wear hearing aids to help him hear better!
Eli's throat and stomach don't work.  Because of this he has a feeding tube called a GJ tube that goes into his stomach.  His tube allows us to drain his stomach and then it has a long tube that goes down into his jejunum (his intestines) and that is where Eli gets his food.  He is on a special formula that is elemental (no allergins) and predigested.  This helps his body not have to use so much energy to process his food.

Because Eli can't eat he has a special cake that lights up and plays music that he uses for his birthdays! 
On the bottom is Eli's GJ feeding tube hooked up to his formula.  The top is called a Hickman, which is a central line.  This is a special long term IV that goes straight into his heart.  This allows us to give Eli all of his water and some medications and it also allows us to be able to draw labs without having to stick him each time. 
This is Eli with his feeding pump and food bag on the left and his IV pump and fluids on the right.  He keeps all of these items in one large bag that we are able to carry around so that he can move about.  He is on both of these pumps for 18 hrs each day.
These are Eli's feet.  Walking can be hard for him and these special leg braces called AFO's (ankle foot orthotic) that are able to help give him more support while walking.

In closing!  :)  Feel free to visit by blog, especially these next 2 weeks.  Next week I will be posting updates from the school events and daily information about Mito as it pertains to Eli and our family.  The following week I will be posting daily logs of life inside of a Mito family! 

Feel free to look around our blog and enjoy!
Again thank you for being such an amazing community for our family!


No comments: