Monday, October 27, 2008

Down Syndrome Awareness month

October is Down Syndrome Awareness month so I thought I should do my part and educate!!

WHAT IS DS? ...a genetic condition that causes delays in physical and intellectual development. It occurs in approximately one in every 800 live births. Individuals with Down syndrome have 47 chromosomes instead of the usual 46 with extra genetic material on the 21st chromosome... Trisomy 21. It is the most frequently occurring chromosomal disorder. Down syndrome is not related to race, nationality, religion or socioeconomic status. The most important fact to know about individuals with Down syndrome is that they are more like others than they are different. Remember that only one chromosome is affected (meaning there is more of it), so all other 46 chromosomes are "normal", that is why Jack has so many of mine and Jeramy's features and has his own unique personality!

DIAGNOSIS...Down syndrome is usually identified at birth or shortly thereafter. Initially the diagnosis is based on physical characteristics that are commonly seen in babies with Down syndrome. These include low muscle tone, a single crease across the palm of the hand, a slightly flattened facial profile and an upward slant to the eyes. The diagnosis must be confirmed by a chromosome study (karyotype). A karyotype provides a visual display of the chromosomes grouped by their size, number and shape. Jack's karyotype is 47xy-nondisjunction Trisomy 21 which comprises 95% of the diagnoses. Nondisjunction simply means that the 21st chromosome did not divide evenly.

LEARNING & DEVELOPMENT...It is important to remember that while children and adults with Down syndrome experience developmental delays, they also have many talents and gifts and should be given the opportunity and encouragement to develop them.

People with Down syndrome are not severely impaired. Most children with Down syndrome have mild to moderate impairments but it is important to note that they are more like other children than they are different. Early Intervention services should be provided shortly after birth. These services should include physical, speech and developmental therapies. Most children attend their neighborhood schools in regular classes with special attention given where needed.

Jack was enrolled in Early Intervention Services right after birth and started receiving therapy by 3 months of age. He is currently receiving weekly physical therapy and speech therapy with occupational therapy evaluations done monthly, so once there is a delay in that area he can also add OT to the list. Small things like rolling over and sitting up have been HUGE in our house and when he begins to walk (which is usually around 2-3 years of age) I'm sure it will be like he won a gold medal!!

HEALTH ISSUES...Many children with Down syndrome have health complications beyond the usual childhood illnesses. Approximately 50% of the children have congenital heart defects. It is very important that an echocardiogram be performed on all newborns with Down syndrome in order to identify any serious cardiac problems that might be present. Some of the heart conditions require surgery while others only require careful monitoring. Children with Down syndrome have a higher incidence of infection, respiratory, vision and hearing problems as well as thyroid and other medical conditions. However, with appropriate medical care most children and adults with Down syndrome can lead healthy lives. The average life expectancy of individuals with Down syndrome is 55 years, with many living into their sixties and seventies.

Many of you know how healthy Jack has been, so we are truly blessed. Jack is currently following up with ENT every 3 months due to his small ear canals and to check for any wax build up. Jack's hearing is great. He coos, laughs, babbles, hates loud noises and says "da da" ALL the time! We also have his first visit with ophthalmology in November, so we will see how that goes.

AND...People with Down syndrome are not always happy (they have a full range of feelings, like everyone else).

Please don't ever tell a new DS mom "I'm so sorry"...that cuts like a knife.

And if you use the "R" word for slang, which society is REALLY bad about, please stop. You have no idea how bad it hurts to hear you say it. Do it for Jack.

Friday, October 17, 2008

Our anniversary trip

Jeramy and I just celebrated our 6th year anniversary...we celebrated by going to Gatlinburg, TN for a couple of days. We had a great time. We did the usual...Cade's Cove, Dollywood, walking around downtown, the Christmas Store, Fanny Farkles & The Park Grill. We also stayed at a Bed and Breakfast for the first was amazing!! If anyone needs a nice romantic get away, Hippensteal's is divine! You wake up to the yummiest breakfast and you come home to the best desserts in the afternoon. We will definitely be going back.

Our quick stop at Ruby Falls on the way to Gatlingburg

Our view from our room

The porch on the main floor

Our room...we stayed in "Bright Eyes"

The room was imaculent with all the special touches that every woman loves!!! We also had a nice bathroom with a huge jacuzzi tub.

Sunday, October 12, 2008

More bday party pics

Here are some more of my favorites...thanks Rhonda for taking such good pics for us!!!

Taking a spin in his wagon from uncle darb

Nat's little one...don't you love the hair?

Nat & Andrew case you have never seen the pitiful face! the middle of his party

Darb, Em & KK

Bday boy is wore out

Nat's son...again, love the hair!

My beautiful KK

Brandy, Conner, Madison and Heather

Just some of the wonderful men in my life!

KK with Grammie

Our newest edition...B


Saturday, October 11, 2008

Happy Birthday Jack!!

Jackson Daniel

6 lbs 9 oz

Happy Birthday!
Our little one is now one year old!! I cannot believe how fast the past year has gone by. It has been a wild ride at times, but oh so worth it! A lot of you guys might not know, but me getting pregnant was not planned...we were actually shocked, but a good shock. I had just started a new job and we were planning on building a would come later. Obviously, God had other plans! I had a great pregnancy and I absolutely loved every minute of it. We found out we were having a boy and he was immediately named Jackson Daniel....I am one of those that has had her baby names picked out for ages. Jack was always a healthy baby on heart or gut defect, nothing to worry about on my multiple 4D ultrasounds, and he was always very active. He came very quickly into this world...he looked just like Jeramy, but there was something a little different. We found out two days later that Jack had Trisomy 21, which is also called Down syndrome. I do not have to tell you how we felt...words will never describe how we felt those first couple of days. I really felt like my world was absolutely falling apart and there was no fixing it. I loved him so much already and it killed me knowing that not everyone would love him and accept him...things would not be easy for Jack and I could not bear to think about it.
Now, it is a year later and I never dreamed that I could be as happy as I am right now. I wish I could have known this a year ago. I prayed for God to bless me with a healthy child and that is just what he gave me. He might look a little different and need extra help along the way, but he is a blessing. Jack will do all the things other kids do, he just might need a little more time to accomplish little goals like walking, talking, & riding a bike. There is so much out there for kids like him. Due to all of the therapy and knowledge we now have about DS, it is possible for Jack to be mainstreamed with the "normal" kids in school, graduate from high school, drive a car and even go to college!!! When I look at Jack I see a beautiful little boy with sweet blue eyes, oh so kissable lips, his dad's feet, my nose, a contagious smile...I could go on and on. The point is that I want people to look past the DS and see what Jack is really all about!

With his Pop Pop

Pen and Nat

Hannah, Sara, Hill and Jana

Starting to get sleepy...he took a nap in the middle of his party!

My daddy

Mam maw and Grammie