Visit with Dr. P

This week we drove up to Akron to have Madeline evaluated by a well-known dwarfism specialist who lives in another state but has clinics several times a year up in Akron.  The drive from Dayton was supposed to take about 3.5 hours.  It took a little longer because we stopped for lunch at Wendy's and then again to clean up the car seat and change Maddy after she threw up everything she ate that day.  At Wendy's Maddy instinctively dipped her fries into ketchup.  She really wasn't all that interested in eating the fries (or any of the fast food), but she liked the dipping.

Dr. P is known for doing a thorough examination of kids and then giving detailed explanations to parents. He did not disappoint.  Here are the main points of what we learned:

* Maddy's kyphosis, the outward curve in her lower spine, is mild.  He thinks that there is very little chance that she will need any major intervention as long as we continue to be mindful.  He said that she is old enough and has developed enough that we can start sitting her up a bit.  For strollers and high chairs he recommends keeping her reclined at 30 degrees.  Umbrella strollers, the kind with no back support, are still not to be used.  (Dr. P gave us much more information than our local orthopedic doc who told us at our last visit that "this will be the quickest appointment ever."  It's not a race.  Apparently patients who aren't surgical candidates just don't interest him much.)

* Dr. P was not surprised by Maddy's history of vomiting.  He said that reflux is quite common in kids with achondroplasia.  (I don't recall her local dwarfism docs ever mentioning this.  Interesting.)  The exact cause isn't known although there are several theories that he explained.  But he also said that we can't know for sure if it's reflux in Maddy's case - her improvement could be a delayed effect of her decompression surgery, or maybe she just happened to "grow out of it" at the same time she started taking the reflux meds.  Regardless, he was very pleased at how she's doing since being on the meds and recommends we continue with them.

* Her gross motor skills are delayed, as is expected with all achon kids.  He is not at all concerned that she is not sitting up yet.  He doesn't expect her to ever do a typical crawl.  She does have very loose knee and hip joints, and she will probably sit up and walk later than other achon kids, maybe when she's around 2 or 2.5 years old.  Although he did say that if we hadn't already told him that Maddy is cruising - standing and taking small steps while holding onto objects - that he would have predicted she would be delayed in that, too.  He said she must be very determined.

Dr. P spent about an hour and 45 minutes with us.  It was amazing.  He gave a more thorough and down-to-earth description of achondroplasia than we'd ever heard.  He gave Maddy a head-to-toe physical evaluation and she screamed her way through it.  He then waited for her to calm down and talked to us at length, answering all of our questions.  He said that Maddy's personality will serve her well when she gets older.

Dr. P and his staff were just fantastic.  They gave us some brochures and will be sending us a report detailing everything that was discussed at the appointment.  We are so glad we made the effort to get Maddy seen by him.