Saturday, December 30, 2006
I like the words to the song that accompanies this one.
A Life Worth Living
This one shares one father's feelings about having a child with Down Syndrome.
Down with Gabriel
This last one is pretty long. It has lots of pictures of children.
D is for Down Syndrome
Apologies to all of you dial-up folks.
Monday, December 25, 2006
Wednesday, December 13, 2006
Sunday, December 10, 2006
I thought about getting some puppies from the pound, but after finding out the cost would be $80 - $120 each, I gave up on that idea. I found someone with a litter of mixed Lab pups that we could buy for free. I brought two of them home. Karen doesn't think they are as cute as the others we had, but is willing to adopt them as long as they perform their job of keeping the deer chased away.
I named the black one Gus. When we were deciding on a name for Wade, I wanted to call him "Gus". That would be short for "Augustus George". You know, since we live in Augusta, Georgia. Karen didn't think that was nearly as cute as what I did. So now I have a dog named "Gus".
Sam & Gus are also the names of two characters in one of Christopher's favorite books.
Friday, December 01, 2006
Saturday, November 25, 2006
Karen's sister & family from Ohio are here for Thanksgiving. We took a canal boat tour up the Augusta Canal in a 65' electric boat. Was quite interesting.
Wednesday, November 22, 2006
Three times! Poor boy!
On Monday we took Wade to see his pediatrician. It was just his normal 2-month checkup. I was impressed by the nurse who gave him his shots. She got all 3 syringes lined up, band-aids ready, told Karen to hold him down, and wham, wham, wham she was finished! I honestly think it only took 3 or 4 seconds from start to finish.
No. The third shot was not in his belly button. Dr. Jones just put some silver nitrate on his belly.
Friday, November 17, 2006
What are chromosomes?
Our chromosomes contain the genetic code which controls and instructs cell division, growth, and function. They are the structures inside the nucleus of living cells that contain hereditary information. A person normally has 46 chromosomes, 23 inherited from each parent. Every person has a unique genetic code (with the exception of identical twins). It is this uniqueness which makes the physical appearance of each person different.
How do we get our chromosomes?Our chromosomes are given to us by our parents. Each parent gives us 23 chromosomes which come from the egg and sperm cells. When they combine, they produce a cell with 46 chromosomes. This cell then divides, the result being that every cell contains identical
What is Down syndrome?Down syndrome is caused by a person having three copies of chromosome 21 instead of two copies. This is why Down syndrome is also referred to by the name Trisomy 21. Instead of a pair of chromosomes, as is found in all the other chromosomes, number 21 includes three chromosomes. It is important to understand that all of the chromosomes of this person are normal. It is the fact that there is an extra chromosome that causes Down syndrome. Every cell in a person with Down syndrome will contain 47 chromosomes (with the exception of Mosaic Down syndrome which is discussed below) instead of 46 chromosomes. There are many theories about how the extra chromosome causes the effects of Down syndrome but little is currently known. Research, however, is continuing and a breakthrough may provide possible treatments to lessen the effects.
How does this happen?During cell division to create a germ cell (either sperm or egg), a cell containing 46 chromosomes divides into two germ cells each containing 23 chromosomes. Sometimes this division does not happen properly and one cell may contain 22 chromosomes and the other may contain 24 chromosomes. This can happen if the chromosomes do not properly separate and instead "stick together." This is called nondisjunction because the chromosomes have failed to disjoin or split-up. 75% of the time it is the egg cell which carries the additional chromosomal material, 25% of the time it is the sperm cell. If the cell containing 24 chromosomes combines with a cell containing 23 chromosomes, the new cell will contain 47 chromosomes instead of 46. If the trisomy is chromosome 21, the person will have Down syndrome. Other conditions arise if the duplicated chromosome is a different chromosome. If the trisomy is chromosome 13, the person will have Patau's syndrome. If the trisomy is chromosome 18, the person will have Edward's syndrome. These conditions are rarer than Down syndrome and have their own characteristics which are different than Down syndrome.
Are there different types of Down syndrome?
There are three different types of Down syndrome: Standard Trisomy 21, Translocation, and Mosaicism.
Standard Trisomy 21 is when the extra chromosome 21 comes from either the egg or sperm cell. Between 90% and 95% of all Down syndrome is Standard Trisomy 21.
Translocation is caused when a piece of chromosome 21 is located on another chromosome such as chromosome 14. The person with Translocation Trisomy 21 will have 46 chromosomes but will have the genetic material of 47 chromosomes. The person with Translocation Trisomy 21 will exhibit all the same characteristics of a person with Standard Trisomy 21 since they have three copies of chromosome 21. Translocation occurs between 3% and 5% of cases of Down syndrome.
Mosaicism is when a person has a mix of cells, some containing 46 chromosomes and some containing 47 chromosomes. This occurs either because: a) The person received 46 chromosomes at fertilization but somewhere during early cell division the chromosome 21 cell pairs failed to split creating a cell with 47 chromosomes and a cell with 45 chromosomes. The cell with 45 chromosomes can not survive but the cell with 47 chromosomes will continue to divide. All cells that come from this cell will contain 47 chromosomes. b) The person received 47 chromosomes at fertilization but later during cell division the extra chromosome is lost. Mosaicism occurs in 2% to 5% of cases of Down syndrome. A person with Mosaic Down syndrome may exhibit all, some, or none of the characteristics of Down syndrome depending on the percent of cells carrying the extra chromosome and where these cells are located.
I copied all of the above from http://www.downsyn.com/whatisds.html
Wade does have Trisomy 21.
Thursday, November 16, 2006
We liked our two small dogs because they did such a good job of keeping the deer out of our garden. Now the deer feel free to come right up behind the house and snack on our winter ryegrass.
Wednesday, November 15, 2006
Distinguishing sensory (inner ear) from neural (nerve) causes of hearing loss
Helping to localize problems in the brainstem auditory pathway
Tuesday, November 07, 2006
This past weekend we were at Hartwell, GA for the annual Southern Mennonite Fellowship Meetings. For the last 7 years, I have been taking my sound and recording gear up and taking care of the live sound as well as recording and selling tapes and CDs of the messages.
Hartwell is about 2 hrs. northwest of here. We went up Friday at noon. I spent all afternoon setting up my equipment in time for the first evening session. Then 3 sessions on Sat with a terrific barbequed pork supper, followed by 2 more sessions on Sunday. Then I packed up my stuff and we got home about 7PM Sunday evening.
A very enjoyable weekend. We enjoyed seeing friends from all over the southeast that we don't get to see very often.
Wednesday, November 01, 2006
President Bush signed the Individuals with Disabilities Education Improvement Act, which reauthorized the Individuals with Disabilities Education Act (IDEA), on December 3, 2004.
Babies Can't Wait (BCW) is Georgia's statewide interagency service delivery system for infants and toddlers with developmental delays or disabilities and their families.
When Wade was 1 month old, we had our first meeting with someone from the BCW program. A lady came out to the house and started what they call the "Intake Process". Basically just asked a lot of questions about how Wade was doing and discussed with us what all the BCW program involved.
BCW works with children from birth through 3 years of age. Early intervention programs can take many different forms and can include a wide variety of services and professionals, depending on the child’s needs.
Today we were visited by 2 ladies from BCW. One was an Occupational Therapist, the other was an Infant Educator. They held & played with Wade to evaluate how well he is doing in various areas such as muscle tone, orthopedics, eye tracking, etc. They felt like he is doing quite well and is not exhibiting a lot of the troublesome symptoms that are quite common with Down Syndrome.
One problem area with a lot of people with Down Syndrome is an overall low muscle tone and increased looseness of the ligaments between the bones. This often leads to orthopedic problems after infancy.
Wade seems to have good strong muscles. He kicks and pushes hard with his feet. Squeezes tight with his fingers, and he is feeding good and sucks well on his pacifier. These are all great signs.
Friday, October 27, 2006
Thursday, October 26, 2006
"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!"
Wednesday, October 25, 2006
Monday, October 23, 2006
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
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.
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"