Hands on a Miracle: Surgery on Monday, Birthday on Friday

Thursday, March 5, 2009

Surgery on Monday, Birthday on Friday

Surgery is Monday at 6 a.m. at Texas Childrens Hospital in Houston. Bryan should be out in a few days and back home in Ingleside in time for his birthday on Friday. A big THANK YOU to everyone for their prayers and support.

Will post on Monday as soon as the all clear is given. In the meantime, YaYa and Grandpa are headed to the Texas Hill Country for a few days of R&R before surgery on Monday.

Bryan and I went shopping for some new clothes for his birthday this week.

We found a couple of really cute hats for him. I snapped this pic on my camera phone.

11 comments:

Sarah said...: We will be thinking of all of you on Monday and hoping everything goes well!!!; March 5, 2009 at 8:49 AM
Destini said...: Candi,

We will be thinking of you guys next week! Love Bryan's hat, very cute! Best wishes for a speedy recovery so he is ready to party for the big B-Day!; March 5, 2009 at 12:06 PM
Tonya said...: Candi! Bryan is so handsome!! If you need anything for Monday, let me know!! I will be here for you guys! Much love to you all!; March 5, 2009 at 5:31 PM
Jennifer said...: I'll be keeping all of you in my prayers. That is the cutest boy ever! He is so photogenic!; March 5, 2009 at 5:53 PM
Jennifer said...: PS. Happy Birthday Brian! Exactly one month younger than your buddy Owen! Can't wait until you guys can meet up someday and play trains and cars!; March 5, 2009 at 5:54 PM
Greene Family said...: You all will be in our prayers on Monday! Bryan is so incredibly adorable!! I love his birthday pictures! Hopefully, he will have a speedy recovery and have fun celebrating his birthday again next Friday!
BTW - I found your blog through Tonya's.; March 6, 2009 at 7:05 AM
Jennifer said...: Thinking about you Bryan and will be praying for you and your family tomorrow!; March 8, 2009 at 9:37 PM
Kim said...: I want to eat him for breakfast. I am thinking of you guys tomorrow! Please keep us posted. Bryan will come through like a CHAMP!; March 8, 2009 at 9:46 PM
Caden and Mommy said...: Candi!
Adorable pictures of Bryan in this post and the previous post! He is so precious!
I hope his surgery goes well! I'm thinking of you guys and anxiously awaiting an update!
Trisha; March 9, 2009 at 3:08 PM
Jennifer said...: I'm still praying for Bryan and hoping you'll get a chance to post soon to let us know how he did!; March 9, 2009 at 9:35 PM
Jennifer said...: OK Candi. You're killing me here. It's Thursday and still no post about the surgery! I know you must be frantically busy but just a "He's OK" will do for me until you get time to give us the whole story!; March 12, 2009 at 9:04 PM

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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Thursday, March 5, 2009

Surgery on Monday, Birthday on Friday

11 comments:

Support for New Parents

Achondroplasia