Friday, October 27, 2006

Photos

Christopher's 3rd Birthday

Wade snuggling with a gift someone gave him today.

Wade sitting in a chair we bought with some gift cards that were given us



The day after we found out that Wade had Down Syndrome, Randall got hit in the head by a swing. This is what he looked like after we spent 2 hrs at the emergency room. They put 3 staples in to hold his scalp together. We were beginning to wonder what was going to happen next.

Thursday, October 26, 2006

A Wedding Story

Here is an account that I found of one of the few instances of a person with Down's getting married. In this case, both had Down's. I found it interesting to see how capable they were at functioning in society.

LAYNE AND SHAUNA'S LOVE STORY
"Shauna and I are married and we are very happy. We have a dog named Pal who lives with us in an apartment in our parents' basement. We both have brothers and sisters, but we live by ourselves with Pal. We are so happy now, and I have a beautiful wife. We believe in eternal marriage."

"A long time ago, I helped my Dad on his farm. Sometimes I drove the tractor, just like my brothers. Sometimes we made mistakes. Then we did not make the mistakes again. Five years ago I got my driver's license. I drive my Pontiac to work at J. C. Penney's. I have worked the more than 20 years. I am a good worker, I am a good driver, too."

"We learned about independent living through the Arc. We plan our own meals. We cook our own food. We like to find new recipes. Sometimes we buy frozen dinners. We like light desserts and low fat food. I weighed 197 pounds when we met. When we decided to date, I did not eat so much with my roommate. I weighed 158 pounds when we got married."

"Shauna does the laundry on Tuesdays. She irons our clothes when I am at work at Penney's. We help each other keep the house clean all week. Saturday is our cleaning day."

"I play the organ. Shauna plays the piano by heart. She is learning to read music too. We have music lessons on Friday. On Monday and Wednesday we go to Dixie College for evening classes. We like the computer too."

"We drive to the bank to deposit my check when I am paid on Friday. Then we drive to the store to do our shopping. We know how to use our checkbook. We are careful with our money because we are building our new home. My Dad helps us with that."

"Doctors said I would never walk or talk. People said I could never learn. They said I could never read. And some people still say people with a disability cannot be married. Me I think sometimes people are wrong."

"Marriage is not for everybody. It was right for us. People used to take care of us. Now we take care of each other. Shauna's family is my family. My family is Shauna's family. But now we are our own family. We like it that way. It is a lot of work, but it's worth it. Our families always there when we need help."

"Our most important message is: Do what is right. If it is important, never give it up. Go for it!"

Heart Checkup

Today we took Wade to see Dr. Henry Wiles at MCG's Pediatric Cardiology Center. They did an EKG, an echocardiagram, and poked, prodded & listened, then pronounced him to have a perfectly normal heart. Praise the Lord! We are so happy!!

Wednesday, October 25, 2006

Hearing Checkup

Wade is getting chubby


We took Wade to his appointment with the Ear, Nose & Throat doctor today. They did several more electronic tests and checked for fluid in his ears. They did find fluid in his ears, so the doctor prescribed antibiotics to try to clear that up. The hearing tests revealed that he can at least hear certain frequencies at a normal level in his left ear. The right ear wasn't quite as good but did get normal readings from some higher frequencies.

The doctor said that until we can get the fluid cleared up, the hearing tests will not be real accurate. We are to go back again in 3 weeks.

Basically, we felt encouraged by the report and hope to find more positive results when we go back next time.

Monday, October 23, 2006

Holland

WELCOME TO HOLLAND

byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Sunday, October 22, 2006

Medical Update

Wade with Randall & Christopher

4 days old – We took Wade to an audiologist to have his hearing tested. He had failed the initial test at the hospital when he was born. He failed this test as well. The audiologist wants us to bring him back when he is a month old. At this point we have not found out about the Down’s diagnosis.

8 days old – Wade visits Dr. Jones (pediatrician). Blood is drawn for testing. Dr. Jones discusses some of the implications of Down Syndrome with us.

10 days old – We take Wade to a pediatric ophtamologist. He doesn’t see anything wrong. Wants us to bring him back when he is 6 months old. I think Wade is the youngest patient this Dr. has ever seen. He acted like he wasn’t sure what to do with a baby that young.

2 weeks old – Visited pediatrician again to check weight gain. Wade is slightly under his birth weight. More blood is drawn for testing. Someone let the last batch set out too long.

3 weeks old – Went to visit Dr. Flannery at MCG’s Childrens Medical Center. He is a genetics doctor. He and his assistant, Carolyn Lovell were both exceedingly helpful in talking with us about Downs, telling us what to expect, and answering all of our questions.

3 weeks old – Went back to pediatrician. Wade is gaining weight just fine. He has passed his birth weight.

1 month old – Back to the audiologist for a third hearing test. This is a basic electronic test that is done on all infants at the hospital when they are born. Wade does not pass it this time either. Somewhere between 40 – 60% of Down’s children have some hearing loss. The ear and ear canal tends to be smaller in these children, which increases the chances of problems. Our next step is to take Wade to an Ear, Nose & Throat specialist for further testing and evaluation.

This coming week we have an appointment with the EN&T doctor on Wednesday. On Thursday we have an appointment with a pediatric cardiologist at MCG for a heart checkup. Approx. 50% of Down’s children are born with heart defects. The doctors who have listened to Wade’s heart have said that they do not hear any problems. Pray with us that his heart will check out normal.

Intro



I have decided that this would be the easiest way to keep family & friends updated on the things we are discovering about our son, Wade. Of course Wade is not alone in this world, hence the name of this blog – "4 GUYS & A LADY".

Wade Michael was born Sept. 18, 2006 to two very proud parents and two excited big brothers. When Dr. Jones (pediatrician) examined Wade that first day in the hospital, he told us that Wade exhibited several physical signs that pointed to Down Syndrome. He said that he really didn’t think Wade had Down’s, but wanted to do testing to find out for sure. Exactly one week later, we received a phone call telling us that Wade did have Down Syndrome.

Now nearly one month later, we have gotten over our initial feelings of shock, disappointment, sadness, & other emotions. Wade is a wonderful little boy, and we are experiencing all of the normal joys of having a new baby in the house. We are resting in the knowledge that God has a special plan for our family, and are excited about finding out what all he has in store for us.

In later posts, I will be giving more details about some of the doctor’s visits we have had and those to come. I will also be posting some of the things we have learned and are learning about Down Syndrome. I invite your thoughts, comments, & prayers as we travel this road together. We are so thankful for family & friends who have shown us in so many ways, how much they care.

-- "The Biggest Guy"