Hands on a Miracle: Missing Them

Sunday, April 27, 2008

Missing Them

Brandy and Bryan are gone for the weekend, they went home to Ingleside so Bryan could spend some much needed time with his Dad, which I am so grateful for. However, I miss them tremendously. Bryan absolutely is the highlight of my day, and Brandy has become a friend and confidant to me, as well as my daughter. I'll be glad when they are back home.

6 comments:

Jennifer said...: Bryan is so beautiful. Really. He's not even just cute. He's beautiful. Love having all the latest pictures!; April 28, 2008 at 5:23 PM
The Johnson Family 5 said...: I wish I could just hold Bryan! He is the cutest thing EVER! Even my mom commented to me the other day at how cute he is!! I have a question..is Bryan your grandson through his mom or dad? Brandy is your daughter-in-law? That is what I have also thought...not a big deal, but I was just curious!; April 29, 2008 at 8:53 PM
BRYAN'S YAYA said...: Hi Katie! I am so hoping we can squeeze a trip to Dallas in this summer. I would love to meet you and Cole in person!

Bryan's Dad (Casey) is my son, Brandy is my daughter-in-law. Brandy and Casey are no longer together, Brandy is living with us while she gets through school, and so we can help her with Bryan until they are able to be on their own. We also have great medical care here in Houston as well, so all works out really well. We absolutely love having them here with us. It is so much better, I worried about them so when they were so far away. And Bryan's smiling face waiting for me when I come home is the best part of my day. My husband Terry agrees wholeheartedly.; April 30, 2008 at 1:20 PM
Kim said...: Bryan's smile can light up a room! I love his pictures!; April 30, 2008 at 3:01 PM
The Johnson Family 5 said...: That would be WONDERFUL if you come to Dallas!! I want to meet all of you!!!!!! We could get some SUPER cute photos of our boys together!!; April 30, 2008 at 10:17 PM
Tonya said...: Bryan is so cute! His eyes!! I know you missed them while their away. He is so lucky to have you for a Ya Ya!!

I hope Brandy and Bryan had a great trip!; May 1, 2008 at 10:33 AM

Support for New Parents

If you have come across my site because you are a new parent of a child diagnosed with dwarfism, I encourage you to check out Tonya's site - "What is Normal?". I cannot say enough about the great work she does educating and supporting parents of children with dwarfism. "What is Normal?" is full of great information on dwarfism of all types and if the information is out there Tonya more than likely has a link to it. She is a wonderful advocate for our children so please don't forget to thank her if you find something useful on her site.

Achondroplasia

Achondroplasia is a common, nonlethal form of skeletal dysplasia (dysplasia - not normal), or a genetic disorder of bone growth. Depending on who you ask, statistics say that one in 25,000 to one in 60,000 births will result in Achondroplasia. Achondroplasia is one of the oldest recorded birth defects, dating back to the Roman Empire. It is characterized by abnormal body proportions — affected individuals have arms and legs that are very short, while the torso is more nearly normal size, and in some cases individuals have larger heads due to "frontal bossing".Before beginning to walk, a baby with achondroplasia often develops a small hump (kyphosis) on his lower back. This is due to poor muscle tone, and usually goes away after the child starts walking. Once walking, the child usually develops a markedly curved lower spine (lordosis or sway- back), and the lower legs often become bowed. The feet are generally short, broad and flat.Achondroplasia is caused by an abnormal gene located on one of the chromosome 4 pair (humans have 23 pairs of chromosomes).

In some cases, a child inherits achondroplasia from a parent who also has the condition. If one parent has the condition and the other does not, there is a 50 percent chance that their child will be affected. If both parents have achondroplasia, there is a 50 percent chance that the child will inherit the condition, a 25 percent chance that the child will not have it, and a 25 percent chance that the child will inherit one abnormal gene from each parent and have severe skeletal abnormalities that lead to early death. A child who does not inherit the gene will be completely free of the condition, and cannot pass it on to his or her own children. In more than 80 percent of cases, however, achondroplasia is not inherited but results from a new mutation (change) that occurred in the egg or sperm cell that formed the embryo. The parents of children with achondroplasia resulting from new mutations are usually normal-sized.

The gene that causes Achondroplasia was only discovered in 1994, a mere 13 years ago, so much research is still being done to learn more about it. The gene is one of a family of genes that makes proteins called fibroblast growth factor receptors. Scientists have recently linked these genes with several skeletal disorders. While scientists are eagerly studying these mutations, there is much controversy from society at the outcome of the studies. Since the discovery, many couples have chosen to terminate pregnancies because of this.

A few notes: Intelligence is entirely normal in people with achondroplasia. The term "midget" is considered offensive in this day and age. The acceptable terms for a person with any type of dwarfism are person with dwarfism, little person, LP, and person of short stature, or simply by their name, as you would address anyone else. If you would like to know more: http://www.lpaonline.org/mc/page.do

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Sunday, April 27, 2008

Missing Them

6 comments:

Support for New Parents

Achondroplasia