Handicap Home And Wheelchair Vehicle Grants For Multiply Disabled Son
(Rittman, Ohio, USA)
Wesley after last VP shunt surgery
We lived in Illinois until our son Wesley's multiple disabilities made us rethink what was best for him. Moving to Ohio was it.
From my late husband, I have a 24-year-old daughter who is still in Illinois. My husband's son lives in Illinois too and he is 19. We have a 15 year old and Wesley together.
We lived in hardship in Illinois, driving to doctors two hours away and my husband to his job 45 minutes away and other doctors 45 minutes away. Wesley had seven doctors in Illinois.
My son is 11 now. He was 10 lbs and 11 oz when he was born and we believed we were bringing home a normal child.
It began when we saw that Wesley wasn't developing correctly. The doctors did a CT scan and saw a cyst in the back of his brain.
They called it an arachnoid cyst. This caused him to have dandy walker variant. The cerebellum hadn't developed right.
In June of 2001 he had the cyst removed and then sent home to heal. A few days after, complications arose and he had to go to a children's hospital two hours away in Peoria Illinois.
The doctors re-stitched the back of his brain and head. The doctors felt something else was wrong with him so they took blood and urine samples and sent them throughout out the country for analysis.
Wesley was sick off and on. He wasn't eating well and he lost weight. When we went to the doctor for a follow up, they said that Wesley had developed hydrocephalus or "water on the brain."
In September 2001 they told us he needed a ventriculoperitoneal (VP) shunt to drain the fluid from brain.
While we were waiting for them to prep for surgery the surgeon came in to tell us he just received a fax from the Mayo Clinic. It said Wesley also had Carbohydrate-deficient glycoprotein syndrome (CDGS).
The CDGS was the reason why he was not gaining weight and was having other developmental issues. They did the VP shunt surgery and then had to deal with the new news.
The doctor did a skin biopsy that was then sent to Belgium for analysis. It showed that he was Type 1a of this CDGS.
We went home dealing with the news and wondering what to do. Before we knew it, the epilepsy started with febrile and grand mal seizures. So we got him on meds for that.
It didn't end there. Later we found out he had a stomach problem; it wasn't emptying fast enough. Then the doctors said he had hypotonic cerebral palsy.
He also has scoliosis, with a 43-degree curvature. He wears a back brace for it. He has had Botox shots for his hips and legs, and he wears braces on legs.
All of this leaves him in a wheelchair. He tummy crawls and pulls himself up to the couch and his kid recliner. He can't sit on his own in a regular chair.
He doesn't speak but we understand some words like mama, dada, baba and so on. He tries other words but they're hard to understand.
He eats all pureed foods and kids' drinks essential for nutrition.
He wears glasses and one eye worse then other. He uses a gate trainer at school and a pacer. They said he would never walk on his own.
He has been hospitalized for many times for pneumonia, bronchitis and vomiting. We also found out he is hypoglycemic. He uses an inhaler to keep lungs strong.
This is all from June 2001 till 2010.
We moved to Ohio in October 2006 and it has been great. All 12 of Wesley's doctors are in Akron. His school is 30 minutes from our home in Rittman. Ohio.
In Illinois we didn't have any schools unless they were in Chicago. We didn't know of any anywhere else in Illinois. Kids like Wesley were mainstreamed in with the other kids and physical and occupational therapy services were brought in from the outside.
Now the present time 2011… Wesley still has all his problems. Recently the VP shunt finally broke after 11 years. The doctors were pleased it lasted so long.
On October 4, he had surgery to replace the shunt. It didn't work, so October 5, the doctors performed a second surgery making it an external shunt. That worked, so Friday the 7th, doctors performed a third surgery to place the shunt inside his head. On Saturday we got to come home.
As of 0ct.ober 28, 2011 he is happy and finally growing his hair in. Tonight we are going to a local nursing home to trick or treat. We can't do it around town because he gets sick and cold too easily and I can't roll his wheelchair to all houses.
We have had to do without a lot to be able to afford to go to doctors and hospitals. We've had to save up for basic things like haircuts, shoes, and so on.
We've had to borrow from friends and family for food and gas. And we've gone to pantries, our church and agencies for help.
For this year, we're three months behind on our house payments and we're also behind on power and water payments.
My husband has used all his vacation days, sick days and personal days over and over in the last 11 years for Wesley's appointments and hospital stays.
I can't work because the doctor said it's best for someone to stay home for him. Anyway it wouldn't be worth for me to work with all the time I'd have to take off to be with Wesley. Also, income earned from working would mess up Wesley's SSI.
Wesley needs special bed for his room and it's hard getting funding and insurance to pay. We need house modified for wheelchair and a ramp and bathroom.
Both our vans are in poor shape. To keep them running, we have to spend money that should go to other things or we have borrow from family to help pay.
Plus we need a handicap lift. Since my husband and I both in poor health, with bad backs and knees, it's harder and harder on us to lift his chair in manually.
We haven't had a vacation since Make a Wish sent us on one in 2006. We can never afford one.
I save as much as I can by shopping at Goodwill, dollar stores, and Amish stores in the country. I also frequent bent and outdated merchandise stores and Walmart as a last resort.
We're able to get Wesley his meds and diapers and pads. But trying to meet his other need is hard and trying and frustrating.
My husband works at Sam's Club. Wesley gets SSI but it goes up and down with his dad's pay so we're always coming up short somewhere.
The church has helped with some things like food and utilities. We have been on a two-year wait for a waiver that they said may not even go through because they don't have a lot of money.
I have had garage sales to pay to visit family and have groceries and pay bills. We had donations of toys and food. This is over the years to the present time.
I make sure to pay cable TV and Internet so we have some kind of entertainment.
We need grants or any kind of financial support to help us care for Wesley. We need to make our bathroom handicap accessible. We also have to redo our back room with doors and a wheelchair ramp.
We also need a van with a wheelchair lift so we can more easily get Wesley in and out.
It would also help if we had an Social Security Disability lawyer to get Wesley on a fixed amount of SSI, instead of a variable amount depending on his dad's pay.
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