When you boil it down, there is a ton of information about parenting; breast feeding, diapering, scheduling, milestones, sleep patterns, bathing tips, birthday party ideas… these things rule the Mommy World on the internet. But where is the information for a child who is not average? You know… the child who is above average, but below in height? Where is the information for children with dwarfism? And if you can’t find anything more than general information about dwarfism, let’s make the search easier, and pin point what we’re looking for: achondroplasia.
There are a ton of “facts”, and “the genetic workings” are explained in detail, but the deeper details, multitude of growth and development charts, information on specific spinal development, and what toys, carriers and car seats work best. Where is that information?
Well, it’s not there.
It’s not in Parenting, Parents, American Baby, Family Circle, Disney Family, OR at your geneticist’s office. It’s not that I’m angry, I’m just confused and deterred. Who do you ask if the doctors don’t know?
I love nice people as much as the next gal, but when I want answers, I want answers. I don’t necessarily care if a doctor is nice when there is no information in hand. It’s not a hard concept- I want to know all there is to know about everything there is to know ,so that Dave and I can raise Addie in the best way possible for her and her needs, while not forgetting our own. We are good parents doing a lot of research, spending time and energy on excavating information that a working doctor does not have time to seek. Except, the one doctor I hoped would know enough to answer questions I had without reading an article she presented to me weeks ago.
I am wholly aware that I need to be Addie’s best advocate, but is there anyone out there who will help me?
The most helpful information I got from the geneticist: Addie’s measurements. For which I provided the growth charts to be plotted upon.
…And provided the accurate reading of said charts- as the assistant, a pediatric specialist, seemed unable to read the caption under the chart stating which lines were for Achondroplastics and which were for AH children.
And so, I guess I’m really just relieved that I did a ton of research so that I could tell the doctor what she was missing, and so I knew what questions I need to delve into further with the right people. But, who are the right people?
I’m hoping to find some answers in Delaware… insurance pending. Insurance; I believe that would be a whole other blog!
On a happy note: HAPPY THREE MONTHS TO THIS BEAUTIFUL BABY GIRL!!
Thank you, one million times over, to the wonderful parents I’ve connected with who have given me more than advice- they have shared all of their medical knowledge with me- making disappointment easier to handle. When I can’t find the exact answer I need, I know I can gain a wealth of medical information from moms and dads who have walked the line before me. Thank you. Thank you so much for sharing with me and helping me navigate my way as a new mom!