Help us support SIOD Brain Cell Research

 Please consider helping us support SIOD brain cell research at Stanford University of Medicine.

Our children suffer from many hits to their systems and one pressing and challenging system we are currently helping to fund is one of neurological issues.

Dr. Lewis' lab will be looking at brain cells to study why these children are having unexplained, complicated episodes that may or may not appear currently on imaging.  Migraines, nausea, seizures, fatigue, the inability to speak, clicking and tremors are all experienced, yet for no real clinically captured reasons.  The study has the potential to help more than our SIOD children.  This study has the means to perhaps help others with neurological issues.  

See the below link for our latest neuro genetics pledge to raise $100,000 for this project and how you can help.

https://my.supportlpch.org/fundraiser/3756017

This picture was taken of Emily and her daddy Joe pre pandemic at one of her grand mal episodes with much imaging and recording taking place to try and capture answers that continue to go unexplained.

Money Talks

 What does twenty-five times five equal?

I don't know.

Think of it in quarters.  How many quarters does it take to make a dollar?

Four. 

Good.  Now add a quarter and what do you get?

One dollar and twenty-five cents.

Great.  Now how do we turn that into a number?

I don't get it.

It would be one hundred and twenty-five because you have $1.25.

Still don't get it.

That is okay.  We will get there.

Seems simple enough to many I am sure.  Not to a special needs child.  We have been working on money at home and with the school for years and although she has gotten better at counting money, to do it all on her own and to transfer thought processes and such is a challenge.  Counting back change?  That isn't quite there yet either. ( Not to mention this seems to be a big issue with a lot of young people.  Don't even get me started on that.)

Our eldest daughter will be graduating high school in two months.  She will then be entering the Young Adult Transition Program (YATP ).  Emily wants to work with animals and run a sweet shop with her grandma.  She also loves to sing and is quite good at it, so she is still wanting to do that as well.  

Her dad and I don't know exactly what life is going to look like for her after high school.  We do know how fortunate we are to be at this point with her.  We also want the best for her and her younger sister, as any parent does.  Quality of life has always been a top priority. 

As Emily and I were counting some of her money today that she has received from birthdays, and we went over how to add, subtract and times to figure out how much in total she has, I was again reminded of the challenges she faces and the tasks of figuring out how to allow her some independence after high school knowing that she isn't able to be on her own.  

On the one hand her dad and I are grateful she wants to still live with us anyway and feels safe in that, yet on the other hand we want her to be able to not feel she has to be confined.  She hasn't led us to believe this at all, yet it is a concern.  As other families are figuring out and finalizing what college their child will be attending next year, we are figuring out what this YATP continuation of school will look like for her.

After counting some of her funds we took in some change to the local bank.  We also exchanged a bunch of dollar bills for larger ones.  This welcomes a whole new conversation and skills.  I am so glad I am able to help her and will always be there for her to do life.