Checkup & Medical Stuff

Last week Madeline had her two-month checkup.  There’s a special set of growth charts for kids with achondroplasia that Dr. O uses to track Madeline’s height, weight and head circumference.  I always breathe a sigh of relief when they measure her head and say it’s not growing too fast.  Her height and weight are good too.  We went over how Madeline’s doing with the five areas of development.  She’s doing great with communication.  As Dr. O expected, she’s pretty far off with her gross motor skills and just a bit behind with fine motor skills.  So Dr. O put in a referral for someone from the early intervention office to evaluate Madeline and see if she could benefit from physical therapy.  Otherwise, we’ve got a happy, healthy baby – no signs of ear infections yet.  She also got a bunch of shots and was such a trooper: she cried for half a minute, then got back to giving everyone her sweet smiles.  And when I say "everyone," I mean the four other people in the immunizations room...it only took two of them to give the shots, but I think everyone there wanted to get a peek at Miss Maddy.  I think that kind of curiosity is something we'll have to get used to.

While I was I there, I told Dr. O that I had been asked some questions about whether there was anything that could be done to “fix” Madeline and that I felt silly for asking but felt obligated to bring it up.  Dr. O said that growth hormone really isn’t useful in cases of achondroplasia.  And as far as limb-lengthening procedures, she said it’s hypothetically possible for Madeline to someday have those surgeries and gain maybe a few inches of height but it’s controversial and it’s not a topic to bring up for many, many years.

This brings me to the topics I wrote about a couple weeks ago.  I wanted to give our friends and family information about Madeline’s condition – it’s rare enough that not many people have an understanding of what kids like her will be dealing with.  I think that knowledge is power, and I feel like discussing questions people might have now will help Madeline and the comfort level of the people in our lives in the long run.  But I think that information is a little tricky in the age of the internet.  Based on the small amount of research we have done over the last few months, and because we had gotten a couple of questions about whether Madeline would always be very short, I wrote that her height is what it is and that it can’t be changed.  However, that’s a very short, black-and-white answer.  I’d like to clear some things up.

• If you look online, you can find articles that discuss the use of human growth hormone on people with dwarfism that is NOT caused by endocrine problems.  However, this is controversial.  It is not mainstream, it has not been widely tested, and from what I’ve read and heard it hasn’t shown to be very effective.
• I was unclear about limb-lengthening procedures.  This is also a very controversial topic in the medical community and within the little people community.  I stated that Madeline could not be made taller by this method.  I should have said that, when she is old enough to decide for herself, she could theoretically go through this.  But odds are she would only gain a few inches of height.  Again, this is not mainstream, and I’m sure there are mountains of research and opinions on this out there.  I found one article that said a patient could end up being a whole foot taller after these procedures, but it didn’t state what all the articles I read did – that that’s probably an unreasonable expectation, and that these procedures can be very, very painful and may bring on medical problems that didn’t exist in the first place.
• Even if there were a procedure to magically make Madeline the height of an average person, she would still have dwarfism and all the other physical characteristics.  She’d still be at risk of ear infections, hearing loss, hydrocephaly, and back and ear problems.  My goal is to limit her medical issues, not add to them.

So here’s my point: we’re not seriously considering any procedures for Madeline that seem to us to be unnecessary.  I gave concise answers to the height questions because I wanted to make our stance clear and I don’t want people bugging us about it.  I’d rather people focus on accepting Madeline for who she is.  Achondroplasia is a condition, not an illness.  It is not something to be “fixed” as far as Mike and I are concerned.  Having said that, we still have a lot to learn and experience.  And we've been very, very lucky that the vast majority of people in our lives are so positive and supportive.  Okay, enough with this wordy post...I promise, more photos are coming soon.