Sometimes it is what it is

I haven't updated this in a while. I am pretty sure no one is reading this anyway. We have had a couple of really bad weeks. John has all of a sudden decided to just start freaking out. At first we thought it was just a sensory issues but after a episode that left me in tears and a whole lot of people looking at us like we needed to be on an episode of super nanny. They think he is in pain or having some type of seizures. So we are on medicine for miagrains. We will see how it goes.

Here is my new favorite song. I have mentioned it before....Dear Mr. God

Dear Mr. God,

I’m writin’ You today
Because it seems like lately
I’ve forgotten how to pray
I know I don’t need this pen
But everybody likes to get
A letter now and then
I’m sorry for not writin’ more

Chorus:

‘Cause I need you
But it’s hard to see
Why anyone as big as You
Needs anything from me
I know You’re there
So how ya been?
I’m alright but I can’t lie,
Sometimes I feel like givin’ in
You’re all I’ve got

Dear Mr. God,
Sometimes I wish
You lived next door
So over coffee You could tell me
What You started all this for
I guess you saw
That sunrise yesterday
Thanks for the reminder
That You’re never gone away
It gives me hope
Telling You what You already know
I need you
But it’s hard to see
Why anyone as big as you
Needs anything from me

I know You’re there
So how’ve You Been?
I’m all right but I can’t lie
Sometimes I feel like givin’ in

Dear Mr. God,
Tell me do You ever cry
When we forget to thank You
For the good things in our lives?
I know I can’t always understand
Why You do the things You do
But I know in the end
I’ll make it through
If I stand next to You
So here I am

Dear Mr. God,
I’m writin’ you today
Because it seems like lately
I’ve forgotten how to pray

Mitochondrial Awareness Week Sept 19-25

This is the letter I sent to some newspapers and stations.

Did you know that each year between 1,000 and 4,000 children in the United States are born with a mitochondrial disease and suffer from severe and devastating symptoms for which there is no cure and no effective treatment? My five year old son John Ryan is one of those children. We received our diagnosis in 2008 after years of testing. John requires medicine for seizures that are still not 100% controlled. He also has a feeding tube and is globally delayed. We follow several specialist on a regular basis and have hours of physical, occupational, and speech therapy each week.


While John's story is amazing within itself that alone is not why I am contacting you. Mitochondrial Disease Awareness week is coming up Sept. 19-25 and I encourage you to help raise awareness for this devastating disease which can lead to muscle weakness, blindness, deafness, even unexplained strokes, seizures, and eventually death. The disease primarily affects children, but adult onset is becoming more and more common.

The National Institutes of Health recently recognized the importance of mitochondrial disease research by considering mitochondrial disease for an NIH Roadmap for Medical Research. We must act to ensure the Roadmap is approved and adequately funded.

While you may not hear about mitochondrial disease on every t.v. station during awareness week it is an important topic that desperately needs more awareness as well as more research. To learn more go to umdf.org. Thank you for your time.


I hope to get some response as I posted it on facebook as well.

Just an Update

I don't have a clever title today. It has been a tough week for John and myself. Finally after a month of phone tag we got a call back from Dr. Little. We still don't have a lot of answers or rather new answers. I have to start checking John's glucose before and after his nighttime feeds. We also started a vitamin D supplement. We will be seeing the kidney dr. monthly. We are also waiting on other results but it could take months.

  John has started his self-injury behaviors again. He has been biting himself to the point he bleeds. We will probably start the sensory diet back up. I need to look at getting/building a wheelchair ramp for John. It is almost impossible to get him up and down the steps.. I will have more to post next month as our schedule increases with dr appointments. I am happy for one month that didn't include travel to a doctor.

Dear Mr. God

I know this sounds like an unusual title but really it isn't. This is the name of a song on the Letters to God soundtrack. It sums up how I feel at times. Sometimes it feels as if you do forget how to pray. In your heart you know that God is listening but you just don't understand sometimes. It is like right now. Our appointment last week went pretty bad. John's kidneys are damaged. It doesn't matter what we do it will damage something else. That is the hardest thing with John's disorder. Due to the fact so many systems being affected we are low in options. We just have to keep hoping and praying. We have another appointment this week. We shall see.

Some of the Tests are in

As many of you know John had his big appointment in May. Well, they called me with some of the results and they are pretty bad. We can't get the FDA to approve the trial meds. All of John's levels are too high. July 7th I will be talking to John's doctor about seeing a nephrologist. His kidneys are getting worse. We will probably try meds first but his doctor says dialysis will probably be in our future. I am more than a little bummed about this but we will make it work. We always do.

Sticks and Stones and New Shoes

I am horrible at keeping up with my blog. Well, if I had time to type I would have time to work out, have a hobby etc. and that sure isn't happening. Since our issues with VBS he had a rough week. We had a bunch of seizures on Thursday morning. I will tell you it is not a good morning when you wake up at 430 to your child having a seizure. He continued to have them until about 930. That made for a long day even after the seizures.

On Friday I decided to take the kids to the zoo. Three kids, one adult, and a bunch of wild animals I must be insane. On the bright side I didn't lose any! John loves the zoo but since his sensory issues are back in full force it made life interesting and brought the worst out in some rude folks. Everytime we would go up to an exhibit there would be no one there as soon as a group of people would walk up John would have a meltdown. We have contiued to have these issues since the zoo as well.

Monday the 7th of June John and I made our treck to Lexington to recieve his AFOs. He is doing pretty good in them. Due to his weight we are having issues with bruising and pressure sores. Thankfully he can walk in them. He had a rough start at first now it is second nature.

Make a Wish Pictures