Thursday, May 30, 2013

Noah's First Baseball Game

Noah had so much fun at his first baseball game.
 Some kids from NC State made a machine that would swing the bat after Noah pushed a button.
He really got the hang of it and really hit hard the last time.
 He loved running the bases. He was grinning from ear to ear and making his happy noises.

The kids on the other team were so sweet to all the kids on Noah's team. It was great learning experience for them.


                       It was a fun night can't wait until next week so we can do it all over again.

Saturday, May 25, 2013

ABR Trip May 2013

Our ABR trip was 2 full days of intense training and our evaluation.
On Thursday we went to the Montreal Bio-dome. It was fun to see all the plants and animals.

 When it was time to leave the Bio-dome our GPS failed to turn on. At first I flipped out and thought we would never make it back to the Ronald McDonald house. I went back into one of the buildings and asked for a Google Map print out to get us back to the RMH. Between my Mom and I we pretty much had no problem getting back. I can say that we as a society have gotten lazy when it comes to traveling but, I much rather travel with a GPS. Technology can be so nice but, it can be so stressful when it stops working.
 I would like to thank my Mom and Dad for going along with me again. I know at times it can get pretty boring sitting in the waiting room of the ABR Center for hours while Noah and I are in the training room. They never complain and are always glad to help me anyway they can.
I like to thank them by stopping on the way home and staying in Niagara Falls, Canada.
 We ate at the Rainforest CafĂ©.
 After we ate Noah went swimming and then was able to watch the fireworks over the falls out our hotel window.

 In the morning we walked down to the falls before getting into the van to come home.

Next post I will share Noah's progress with ABR.

Thursday, May 16, 2013

Noah Needs A Safer Bed

When Noah was 4yrs old he was getting to big for the baby bed he was sleeping in. We put him in a regular twin bed with a bed rail. One night the little booger called out to me, I went to check on him and he was stuck between the mattress and the bed rail with his feet in the air. Something had to be down in order to keep him safe in his bed.

We then went to a bed made by Step 2.

At first it actually worked really well. It was high enough that it didn't hurt my back and with the help of a bed rail it kept him safe in his bed.
Over 2 years ago he started hurting himself. The bed is made to look like wood. The bumpiness of the plastic is a bit ruff on Noah's skin. He scoots and moves around in his bed and rubs his skin raw.  He is in so much pain that he makes himself sick. The last time he did this he had a 103 fever and ended up with pneumonia. This has got to stop....... 

I have been fighting insurance and our DME provider for over 2 years to get a Sleep Safe bed for Noah. It's the perfect bed for Noah. It has sides that fold down and we can even get padding for the sides. I wouldn't have to worry about Noah getting hurt or falling out of his bed. I could rest easier if I knew he was safe in his bed.
Insurance will only pay for a regular hospital bed. Noah doesn't need a hospital  bed he needs a bed  that will keep him safe. Can you imagine what would happen if he was put into a hospital bed? (even if it had added padding) Nothing good would come of it.

Our only hope now is finding someone to build a bed for Noah or, coming up with $8,000 to buy one.
Gosh, why does thing have to be so darn difficult.............

Saturday, May 11, 2013

Hero With A Heart Award

Emily was the recipient of the Hero with a Heart Award last night from  Richland Newhope.
 Shelby Mayor Marilyn John nominated Emily for this award due to her video she made to
Emily was one of six people nominated this year for the Hero with Heart award, which is given each year to someone in the community who has made a significant difference in the life of someone with a disability and whose efforts have contributed to positive pubic awareness for people with development disabilities.
We had a nice dinner at the Roadhouse in Ontario.

Noah was the inspiration behind her video. She just wanted everyone to know how awesome her little brother is.

What a great night. We are so proud of you, Emily!!!

Thursday, May 2, 2013

Answered Prayer Can Be Overwhelming

For the last 15 years we've been all alone (at least it seemed that way) in the special needs community. I have always said I would love to have someone on my side guiding me through the maze of trying to find what is available for Noah. Instead its been a struggle every step of the way. I always thought there should be a easier way for a parent of a special needs child to know what is available to them. I feel someone should be contacting the parent soon after they get a diagnosis. When a parent gets a diagnosis they instantly feel isolated and alone. If someone could be there, I feel it would feel a lot less stressful and overwhelming. It almost feels like you are being thrown into a cage of lions with no way to get out.
With that being said, I have prayed over the years for God to send me someone to help guide me. This last week God has answered my prayers. I have been so grateful and overwhelmed at the same time. I have been blessed tenfold. She has taken the time to help us out in so many ways. I can't begin to repay her. I was in tears the other night, just from the relief of finally having someone here to help guide me. It's has been way to long to doing all on my own.
Thank you so much for being a Earth Angel.
I hope one day I can Pay It Forward and do the same thing for someone else.
In other news.. we traveled to Mobility Works in Akron, Ohio on Saturday. What a beautiful day for a drive. We went there to dream a little and figure out what we wanted in van for Noah. I was hoping for a test drive but, that didn't happen. Although, we did get to push Noah into several. Life would be so much easier with handicap accessible van for Noah. Maybe one day.......