March 13, 2007 was the beginning of a magnificient journey for my family with the arrival of my grandson, Bryan James. Bryan was given an incorrect diagnosis of lethal skeletal dysplasia in eutero. We now know Bryan has Achondroplasia, the most common type of dwarfism. This blog chronicles his life and the world he has opened my eyes to that I never knew existed. He is our miracle, I can't imagine my life without him.
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Please sign Bryan's guestbook at the bottom of this page THANKS!
To my two dear friends who have no boys, this is why mothers of boys have that "the lights are on, but nobody's home" look in their eyes, even years after all the boys have left the premises.
I had every intention of updating this site tonight, but after:
driving 4 hours while entertaining a 2 year old in a 2 seater roadster before the sun came up,
attending the first day of PT when said 2 year old and PT are trying to decide who's boss,
catching up with and commenting on all the facebook friends I love and adore and can't wait to wake up and hear from each morning,
doing 6 loads of laundry and making changing sheets on all the beds to prepare for the next round of guests,
cooking a meatloaf, mash potatoes, corn and biscuits for hungry baby daddy that just arrived from offshore,
watering the plants that were sizzling in the 105 degree Texas heat with no water for 4 days while caretaker was living the life of Riley (who is he anyway, and why has he not written a book?),
going to Yoga to further enlighten oneself so as not to guilt generation currently being reared,
I am too dadgum tired to be creative and download the 10,000 pictures I took of my adorable, beautiful, healthy grandsons this weekend. Even though my favorite thing in the whole wide world is showing them off and sharing them with the world.
When Bryan came to stay with us, he had a runny nose almost constantly. It seemed as though anything he put into his mouth or near his nose set off an allergic reaction and the un-ending cycle of his nose pouring, then drying up. And every trip outside ended up with stuffy eyes, runny nose, etc. Pink eye seemed to be at least a bi-monthly visitor to his immune system. He had battled chronic constipation since the day he came home from the hospital, and had recently been in the E.R., as the constipation became so severe he had to have medical intervention to help him with it. The kid simply could not catch a break. This on top of all his "major" medical issues...hydrocephalus, resulting in a shunt and hypotonia which causes him developmental delays in his gross motor skills. He rarely felt well an entire day, much less a whole week without something setting him back.
As soon as Bryan went back to see his old pediatrician here in Houston - after giving us instructions and medication to get everything else cleared up, she handed me 2 boxes of powdered probiotics and said, "Give this to him...it will change things".
Now, I have a dear friend who has been using supplements for a while - and if you know me, you know I am not a vitamin, supplement, type person. I've just never been one to take a lot of stuff...I rarely even take a tylenol. At this point, I was willing to try anything. And the fact that Bryan's pediatrician - who I absolutely love and trust more than any doctor we've ever encountered - not only recommended it but handed it out in her office - was enough for me to try it.
That was nearly two months ago. Immediately, I noticed Bryan was having regular bowel movements - at least once a day, which he has NEVER done previously. (Now once a day the majority of the time, at least every other day). Once he healed from what was going on at the time, Bryan has not had one bout with allergies, not even one runny nose. No pink eye. No ear infection. No cold, cough or bugs. And all of this while recovering from major surgery. This is the longest he has ever gone without some type of infection or complication.
While the probiotics have not changed Bryan's major issues, I believe they have enabled him to stay well throughout his recovery which has helped him become a little stronger every day. I'm sharing this because it seems lately I have heard so many LP parents out there discussing the latest bug their child has picked up - and if this has helped us I am hoping it will help you too.
If you are interested, please email me and I will give you more information on what we use - or just ask your pediatrician if it might be helpful to your child. I'm sure they can point you in the right direction. There is LOTS of research on the internet as well. It has changed Bryan's life so much that I had to share our experience with everyone.
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.
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 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