Madeline's Medical Stuff

The whole point of us moving back to the states was to get Maddy medical care, so we were expecting to have lots more appointments and tests.  Here's what's being going on since her appointment with the specialist in Cincinnati last month...

Dr. T had told us to see an ENT in Dayton because it's so common for achon babies to have ear problems.  A few weeks ago we saw Dr. M in the base clinic.  At first he didn't understand why Maddy was even being seen by him because she didn't seem to have many symptoms that would require his care.  But then she had several tests in audiology.  Turns out that Maddy had fluid in one ear, and was about to have fluid in the other one.  Her hearing was somewhat impaired at the time of the hearing test, and she was having trouble hearing low-frequency sounds.  Though she never showed signs of an ear infection, she does sometimes tug at her ears, probably because of the fluid.  Bottom line: she needs tubes.  Dr. M said it wasn't an emergency, but urgent enough that he wanted the procedure scheduled in about a month.  Unfortunately the knucklehead gentleman who scheduled it screwed up and is now trying to push her surgery date to the end of October.  *update: surgery is 4 days from now..the same day we get our household goods delivered and were supposed to move into our house*  Since she's just getting tubes, she'll only need a face mask to administer gas during the procedure.  The whole thing should take half an hour.  If she ends up needing another set of tubes in the future, that's when they'd take her adenoids out.  That's the surgery that requires full anesthesia, and that's where achon kids require special attention and should ideally be operated on by a surgeon familiar with achondroplasia.  We'll cross that bridge when we come to it.  Also, Dr. M looked in her throat and said her tonsils are already enlarged and will probably have to be taken out when she gets a little older.

Since she got the diagnosis of kyphosis (heh, rhyming) we've been extra careful in holding Maddy and supporting the bump in her back.  We also started taking her to both occupational and physical therapy, each for one hour a week.  Therapy is controversial for achon babies because a) some people say there's no need for therapy, these babies will develop in their own time, and b) therapists who push kids too hard to meet milestones, especially milestones designed for average-height kids, can actually do more harm than good.  Dr. T had told us we should do whatever we wanted with therapy, but to beware of pushy therapists who don't understand Maddy's timeline and limitations, especially since she has back problems and should not do some things like sitting unsupported.  Well, I managed to find the kind of physical therapist that we were trying to avoid.  He was setting inappropriate goals for Maddy, seemed to ignore me the several times I told him that she shouldn't lean forward or sit unsupported, and just didn't have a good way of interacting with Maddy.  So after three sessions and a discussion with Maddy's base pediatrician, we put PT on hold until after she turns one and we can talk more with Dr. T.  What's really awkward is that the occupational therapist is really great, but she works for the same therapy group as the PT we just quit.  I see some tense moments in the future...

Maddy's back and ear problems are related to her condition, but she's been having eating problems that have nothing to do with achondroplasia.  For months she couldn't hold down more than an ounce of pureed baby food once a day, and she ate formula around the clock.  Last month the pediatrician gave us a referral for her to be seen by the pediatric GI doctor at the local children's hospital, and we'll see him tomorrow.  In the last few weeks her eating has improved - she is up to stage 2 foods (combination foods, some slightly thicker) twice a day, up to 2 ounces at a time.  She still has two bottles at night, but that's an improvement.  She still won't eat more than 4 ounces of formula in one (very slow) feeding but I've heard that some babies are just that way.  The pediatrician is still hoping that this is a stage that Maddy won't be in forever.  She said that if the GI doc is concerned for some reason, he might want to do a scope...and that means anesthesia.  So let's all cross our fingers and hope it's just a stage.