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!
This would be a fantastic opportunity for families who have children with the condition that your daughter has to get together and create informational literature on all the important things to know, not only about the biological make-up of your child, but about things like car seats and carriers to proper nutrition and toys. There has to be more out there though. Considered going to the Little People Convention? I know they hold one every year.
YES! There is so much support with the families we have met- I am so grateful for them. But when I go to a doctor, I expect some sort of answers and information. I’m sure we will find someone good for us- this was just such a frustrating experience.
Nikki Calcione says
You are a fantastic advocate (and mommy) for Addie. You are going to be the mom who gets information out there to give people answers and information they need when doctors, like you stated, cannot give answers or information to their patients who are coming to them for their guidence and expertise. Whether it be by book, speech, or an article you are going to be the one to do it. Doctors who are “specialized” in genetics or specialized in anything for that matter, should in fact have more information for everything that their patients are being sent to them for. I read everything you write in your blogs and even though I am not ‘blood relation’, i love you like a sister and her like my niece. I like to read everything you write so i too can be knowledgable on achondroplasia and to keep up with Addies every day accomplishments and milestones 🙂 . Having said all of that, i love you Addie..Addie and Anthony.. ‘A’ squared <3
Hey just read this recent post and wanted to respond. I have been responding to your other posts. Lol
Here is my blog lylaourlittlemiracle.blogspot.com
Here is my email
You have questions, I got answers. Email me and I will give u my phone number so we can chat if you would like.
Your daughter is so beautiful. I want to help. Can’t write anymore because I am in the car going to DuPont to see Lylas doctors and I am getting car sick doing all this typing! Lol
Ugh. I know the feeling. And Sabela Luna has hypochondroplasia, so there is even less info out there for us. For growth charts, for example, we have to guess somewhere between the AH ones and the ones for acondroplasia. I’m staying here in Spain for a month and when I went to look for info on hypo here, there is nothing. All the associations here are for acondroplasia. I second the huge thank you to all the parents who have come before us; who share their knowledge and experiences with those of us still trying to figure out what all this means for our children and for us, their advocates.
I completely understand the emotions! I’m currently 23 weeks pregnant and we have been told that our daughter has hypochodroplasia ( a form of dwarfism) which my partner and his family carry the gene and suffer from. All his family could tell us is ‘it’s worse in girls & growth hormones will help her grow to a decent height ‘
They have no girls in the family with the condition and I’ve been told to just wait! I want to know as much as I can so I can provide the best for my daughter. Frustration at it’s peak.
You got this, mama! Stay strong. Keep advocating. She will be just fine because you are doing everything you can to make sure that’s true!