Hands on a Miracle: Boy, am I tired!

Friday, April 10, 2009

Boy, am I tired!

For those of you that don't know, Bryan is staying with us for a while so he can be closer to his doctors and get the medical care he needs to get on his feet....literally and physically. Bryan has been with us for 2 weeks now and we have been doing the follow up for his shunt and getting everything else switched to Houston. ENT, PT, etc. Right now the hunt is on for a great nanny to come in and help out my daughter Shelby, who is currently caring for Bryan while I'm at work (and doing a GREAT job of it). Shelby is due with her first child May 28th, so the clock is ticking away. I have an interview today with a young lady who is an early childhood specialist student in her junior year and she is planning her masters in OT. I'm really hoping she is the one.....

So, this week we put up 2, two, TWO cribs at our house, rearranged the entire place and babyproofed everything. Wow....talk about life changing. We absolutely love having Bryan with us. He is making great progress, finally, and is starting to gain some weight back and sleep through the night. He had some complications after surgery that would probably be considered minor, but all of it really got him down and he was weak, lost weight, and lost all of the skills he had recently aquired during his month or so with the PT. Hopefully he will be able to pick them all back up quickly...and reach our goal of walking by the end of summer.

6 comments:

Tonya said...: Glad to hear he is doing well and adjusting to his new home! Your doing a GREAT job and Bryan will thank you later!!; April 10, 2009 at 6:04 PM
Jennifer said...: Been wondering what was going on with you guys! Glad to hear Bryan is getting back up to snuff. (Whatever the heck that means...what a silly expression!) Looking forward to some new pictures grandma!; April 10, 2009 at 9:30 PM
Kim said...: WOW! That is exhausting. What an amazing task taking on Bryan right now. I am sure you are doing a super duper job! I hope he continues to recover really quickly!!!; April 11, 2009 at 10:51 AM
Bobbi said...: Wow...I'm sure you are tired! I hope the search for the nanny comes to an end quickly. Good luck with that. And he WILL be walking before you know it :); April 12, 2009 at 1:55 PM
Caden and Mommy said...: Candi!
I hear ya on the tired ~ these buddies are exhausting! My Mom came to visit this weekend and half way through the day I said, "Mom, do you now understand why I cram so much into my lunch hour - it's the only time of the day I can get anyting done" :) But they are well worth it!
I'm happy to hear Bryan will be with you for a while ~ keep us posted on his improvements. It's our goal to have Caden walking by the end of summer too!
Trisha; April 12, 2009 at 9:50 PM
Destini said...: I think from Facebook you found your nanny, so congratulations! I'm sure having Bryan there is a total joy, but little boys are definitely exhausting! I'm looking forward to more frequent Bryan pictures (hint, hint)!; April 14, 2009 at 1:16 PM

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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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Friday, April 10, 2009

Boy, am I tired!

6 comments:

Support for New Parents

Achondroplasia