Seizures

I was looking at old videos... thought I share this one.

It is Joshua having seizures. Amazing how far he come since then.

What a POTHOLE???*UPDATE*

Be back later .....hope whoever reads here might drop a line and let me know what is a pothole?

Well Out of the mouths of a teenager!!
A pot hole is another name for your girly private!


Courtney had me laughing so hard about that!!!! So next time you think of pot hole surely makes you wonder which type of pot hole being spoke of!

IEP time again...

Where has time gone! IT time for IEP's again! I normally has things out with teachers and OT before hand and try to get the IEP pre done in a way. Several years ago, I did 3 IEP's in one day.. never again! Now we do them one per week. What am I thinking stressing for 3 weeks out v/s one day. So think next year.. IEP's will be set up all on same day, just to get them all over and done!

Not sure this year what will happen at any 3 of the IEP's for once... I will be going in sorta blind. I have to say reading so much online and others do for there kids. I feel alot of time I fail my kids but doing the best I can. I see friends online kids who sign so well at 2-3yrs old.. and they do it well! I look at Joshua 5yr and rarely signs... mabey I failed him in some way! Or am I failing him keeping him at home on medical homebound. How can you learn if you are sick all the time.. but I am no teacher and just teaching him daily stuff. Not sure what I am doing.
I give school credit for teaching Courtney to read at 4-5 yrs old..... Dayton the ability to start reading here and there. I have to say... Joshua walking with the walker and saying a few words is all because of ME not the school. So have I really failed him!
For Courtney, we have several options, 1)homeschool 2)move to 8th grade 3) move to 9th grade. Dayton is moving to 4th grade... Joshua... homeschool or retain in 5K...
So.. once again... I got to get my ducks in row... Dayton will kick off IEP season next Monday 31st!!!

Challenge for you all....

Ronald McDonald House

I wanted to take a min to tell about a wonderful place! For the last 14 years we have been going to Atlanta, GA.. we have stayed with Ronald McDonald House. We are so grateful this organization is available for families like ours. We travel well over 100 miles one way to get our kids to the Dr's and to hospitals for surgeries. Thankfully the RMH is there for us. We have watched house mangers change and people come and go. We have met families all over! I can recall moms, dads, and grandparents and even siblings of little ones over at the hospital. Every time we walk in to the doors of RMH of Atlanta we are home away from home. Over the years we seen many changes and we are about to embark on a much bigger change. We may have stayed for the last time at the 'RMH' on Houston Mill Rd. They are in the process of getting bigger and better!! Of course means things will change, people will change. I have to say the one thing that won't change is there purpose and the feel of home!
I am grateful for local business, organizations and families around who are able to donate to RMH! Rather it fiance, food, time or even the tabs off the cans!

So my challenge for each of you... see if there a RMH near you. Maybe you can pop in and met the manger and ask what you can do! Maybe fix dinner one night for the families.. gather several friends and all pitch in and cook away! There always wish list for RMH's, you can take some stuff and drop off! There recycling ink jets or pop tabs. Even a small group to pop in and entertain the family to help them relax. Love to hear if you have or plan to take the challenge!

The MRI is done...

Rusty, Joshua and I left on Thursday 20th. Joshua had 2 appts, one with neuro and other was preop. We slept over at the RMH and greatful we got a room! We headed up to hospital on Friday, 21st.... at 8AM.. was set to go back at 10AM. Of course signing all the paperwork and talking and all the general information like any 'surgery' and anesthisa is being used. Joshua was taken back at 10AM.. the MRI dept popped in and said all went well on there part and he tolrated the contrast fine and heading to IR(interventional radiogoly) for the g-j tube to be replaced.
So after a total 2 1/2 hrs.. he was back to us! He slept the first hour.. and after that was ready to get and go!
Traffic was HORRIBLE coming home a normal 3 hr trip took us nearly 4 1/2 hrs. Thank goodness for our home and nice comfty beds... we picked up the kids and got all of us home and all in bed by 9 and me around 10:30 and Rusty.. who knows....
We got to sleep in a bit... about 8AM it was nice!

Thanks for those who prayed for us and thought of us yesterday!

Many Faces of Joshua

Aricept and Down Syndrome

I have been reading such much about Aricept and Down Syndrome. I been asking other parents that have children with DS there opionion of Aricept.
Why you ask? We been ask to place Courtney in a 'study trial' of the Aricept. We would be followed closely with the neuro. I mean weekly visit and check up and several hours testing.

After Rusty and I tossed this in the air with so many cons and few pros. We decided to not mess with mother nature. It is best to leave it well enough alone and if it ever comes out FDA approved for Down syndrome and the kids are much older(40's) and we see changes in them we may try it! For now... we will walk away from this and know we did best for Courtney,Dayton and Joshua.

Here some links for those who are interested the information.

"I Could... If They Would"

BILLY GILMAN LYRICS

"I Could... If They Would"

If they would find a cure when I'm a kid
I could ride a bike and sail on rollerblades, and
I could go on really long nature hikes

If they would find a cure when I'm a teenager
I could earn my license and drive a car, and
I could dance every dance at my senior prom

If they would find a cure when
I'm a young adult
I could travel around the world and teach peace, and
I could marry and have children of my own

I could... if they would
I could... if they would

If they would find a cure when
I'm grown old
I could visit exotic places and appreciate culture
And proudly share pictures of my grandchildren

If they would find a cure when
I'm alive
I could live each day without pain and machines, and
I could celebrate the biggest thank you of life ever

I could... if they would
I could... if they would

If they would find a cure when
I'm buried into heaven
I could still celebrate with my brothers and sister there, and
I could still be happy knowing that I, knowing that I, was a part of the effort