Perfect Christmas gifts for Childrens with special needs..

Ok, If you like to be called "special" then get the book "Someone Special Like Me."  But if you don't like being called "special," then try the book "Don't Call Me Special."  Matthew says he is special and you can call him special.. just don't call him late for supper.. yea, he said that.



Now for the parent of children with special needs I recommend the Child with Special Needs and More than a Mom.  I have not read either but I have heard they are great books I would love to get one of these, or both for christmas.

This sourcebook has been created for parents who have decided to make education and Internet-based research an integral part of the treatment process. Although it gives information useful to doctors, caregivers and other health professionals, it also tells parents where and how to look for information covering virtually all topics related to microcephaly, from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research.

Chronic Kids, Constant Hope, You gotta read this book!

A book that Matthew's nurse brought me.  I am not much of a reader because I don't have that much time.  If I do read, the book has to keep my attention from beginning to end and this one did.  Here's just one of many of my favorite parts of the book.
 "We know our Children's worthiness rests securely in God's plan for their lives.  Children with disabilities can frequently accomplish more than able-bodied people because of their ability to reflect Christ in their differences." Hoekstra/Bradford


Chronic Kids, Constant Hope

New friends, new places to go, our new life!

I have hundreds of photos that I have taken since we moved to Bristol, VA.  We have made many new wonderful friends and met FB friends for the first time.  Here are some pictures of me and Matthew's new friends.

New friends are Kristie and Billy Mason, Donna and Chase Addington.  We also me Minnie Salyer and her son Spence

Part II You'll never Believe Where we are on our Journey.

Yes, you saw correctly.  Instead of Matthew getting approved for attendant care services through the EDCD waiver, he was approved for 10 hours a day, 7 days a week nursing care through the EPDST waiver.  Right now he has an RN coming 5 days a week.  This weekend, an LPN is coming to work every other weekend until they can find someone permanent for weekends... HE is also eligible for the attendant care services through the EDCD waiver but I have not found an attendant yet.
Not one, not two but THREE to help make Matthew's life the best that it can be!

It has been wonderful having help with Matthew and seems like a dream that I will be getting even more help this weekend.  Then it was on to the next step.. finding a job so John can quit his and come be with his family.

I've only been really looking for a job for 3 weeks now.  Right now Im working 19 hours a week at Aid & Assist as a personal care attendant and I really love it.  It's just temporary until I find a full time, better paying job.  I have had 2 interviews at a really good job in Abingdon and got a call back to interview with the owner this coming Thursday.. on the day of our anniversary.. so maybe that will be good news.  I had another interview last week with Virginia Highland Community College.. Now that would be a WONDERFUL job with great state benefits, sick leave, retirement.. That's the one I REALLY want.  I may know something about it by tomorrow.. or if I will get called back for a second interview.  Because of the job market, people can afford to be pickier than they used too.. I have not had just one interview YET.. always at least 2.. But God knows which job I am suppose to have.  I am qualified for them all but if I could do the job I do now, full time with benefits,and better pay, I would stay with it but that's not part of the overall plan.. maybe later.

I have the new place all fixed up.. it's a little smaller than what Im used too but it feels like home now.  I have never felt any regrets about moving at all... I love living in the mountains I love the weather.  Matthew and I were able to go, go, go, all summer!  It was never too hot to go anywhere.. except when the a/c went out in my van during the move.. that's another story. 

There have been rough spots all throughout the move but we kept on pushing and pushing and are still pushing ahead!!!

Matthew has a new pediatrician, we have the ceiling lift up in the tiny bathroom, a new hoyer manual lift, he's been to see the neuro surgeon in Charlottesville to get his pump seen too, he gets all his DME needs, like milk, diapers, etc.. He doesn't have his first neuro appt till february and we have ortho and endo appts coming up soon.

Someone asked me what will I do if VA stops home health care... well, I'll just have to go shopping states again... I mean, they (the govt) continues to allow corruption in the handling of medicaid funding, they allow Drug companies, and DME companies charge outrageous prices, so I don't feel guilty one bit running around all over the place getting Matthew what he deserves.  If you are without help for your child medical needs you better get moving.  Before long there's not going to be any help for anyone.. all those taxes they take out of our checks is feeding the big dogs pockets, not ours.  Don't let some lame-O state that doesn't know one thing about how to run their children's insurance program keep your child from getting what he deserves.  And don't stay put in a state that has the highest unemployment rate in the US and rates 51 out of 51 being the WORST in providing for their disabled & handicapped citizens.  That just makes me sick.

Here are a few pics from the whirlwind move.

Matthew at Steeles Creek Park, 1 on MANY

parks very close to our house. 

Even Gizzy has a new friend Marley

that comes to see him every morning.

I get to spend a lot of weekends

with my beautiful Granddaughter Makenna.

She loves her bubby Matthew more

than she loves anybody.

I bought all used furniture

from thrift shops.

All of us gals at Steeles Creek

Even sideways we love eachother

My awesome son. Without his help

I"d probably still be sitting in MS.

My wonderful, awesome, trustworthy,

faithful & loving husband John

with our angel Matthew

My Rock on a rock.

Just one of many beautiful days in Bristol

I hung clothes out to dry.  Matthew was

a big help as you can tell.





You'll never believe where we are in our journey!

I have not posted since early June.  It's been like a whirlwind but wait until you hear how far we have come in our journey!  I made some goals in June and I stuck to them with avengence.  Didn't let anyone get in my way and if they did, well, they are probably mad at me, ha.ha.

I must update about the baclofen pump surgery Matthew had in March of 2010.  Besides his feeding tube, this was another surgery that I am very happy with.  His hip pain is 85% better.  His gait is incredible!  Remember, before surgery you couldn't get a flat palm between his thighs and changing

a diaper was getting impossible.  He can get his legs almost flat and sometimes he is so loose, it's like changing a newborns diaper..(well not that loose but there is a significant difference.)  ADVICE: Get a baclofen pump if your child is diagnosed with severe spacticity and it's so bad it's pulling their hips out of socket and causing atrophy in the joints! Don't wait until the atrophy sets in and the hips are dislocated!

Guess where we are living.  Tennessee? No.. BRISTOL VIRGINIA.. The Birthplace of Country Music

Bristol is located in the Blue Ridge Highlands region of Virginia and lies directly on the Virginia/Tennessee state line. Washington County surrounds the city.

After researching for a while, I found out that the waiting list for home health care for Matthew would be almost as long as the one in MS.  So, as bad as I wanted to move close to family I had to keep looking.  I have an FB friend that lives in Virginia and I began corresponding with her. First of all, she said what I was doing is called "shopping states."  So I did more shopping and found out Virginia has their waivers broken down and go BY THE SEVERITY OF THE CHILDS NEEDS..DO YOU HEAR  THAT MISSISSIPPI??? THE SEVERITY OF THE CHILDS NEEDS AND BREAK DOWN WAIVERS!!!!....
After I got all my facts straight and did my homework I set my goals.  I found that through a waiver called EDCD there was NO waiting list for him to get an attendant.  That was all the push I needed to get me moving.  Didn't matter if it was a nurse or not.  I just needed some kind of help.

The way things fell in place will amaze you.  My oldest son moved back home while him & his wife worked things out.  He already knew of my plans to move before he came back home.  I offered them our house in MS... all they had to do was take over the note...a lot less than they were paying and take over the utilities.  As they were unpacking their dishes, clothes, etc.. I was using the same boxes to pack mine up in!  My son had some time off so he pulled a 20ft trailer all the way to VA for me.  My sisters best friend was working on a house that they were getting ready to rent that they had turned into a  2 bedroom duplex. Great price, great location, beautiful old house.

 
 

 

My dad and my son Casey built Matthew's ramp. It was early July and it was HOT!  As of July 1, 2010, we were official residence of the State of Virgina, City of Bristol. (For your NASCAR fans, I am 2 exits away for Bristol Motor Speeway!)  Gotta take a break now but I have even more exciting news to share about the services we are getting now!!! And If you are wondering about my husband, well, I'll have to tell you about that too! 

I'll tell you all about the NEXT photo in my next BLOG.

Quick note...

The fruits of the Spirit are the qualities of character God grows inside of you. Our AngelBabies are here or have visited us on earth to help our character grow and know REAL love, joy, peace, longsuffering, kindness, goodness, faithfulness, gentleness, and self-control. I really appreciate the magnitude of this experience I am having with Matthew. Feel deeply sorry for those that have turned him away...

When I think of what everyone is missing out on, I want to just cry because I know it's nothing else they will ever get to experience in their life again.


The picture is of us at the neuro's office... WAITING 4.5  HOURS! Longest on record. lol  Couldn't leave.. had to get his pump turned up one more time..


Moving FRIDAY or SUNDAY!!!! Yeah!!