Thursday, November 3, 2011

A cancellation? Yes, I will take it! UPDATED

G has been complaining the past few weeks about her legs. And her ankles. And then the other night, we were hanging out and I heard it -- her hip cracks!

She has always had flat feet and her ankle joints are loose. But year after year during our visits to John Hopkins, we are told to simply watch it, that there will come a time when it needs to be treated but that we should wait to see what her body will do first.

Well, today is time. Well, tomorrow to be specific.

Today I called. Her pediatrician gave me the name of a great pediatric orthopedic doctor. I did some research and his resume is very impressive. So why was I SO surprised that his receptionist informed me of the 6-month waiting list at his office for new patients. But today I was lucky. Because tomorrow there is a clinic about 30-45 minutes from our house and there was one cancellation. Did I want it? OF COURSE!

Tonight, I will spend time printing out G's medical information and the hubby's too as a point of family reference when it comes to Marfan issues. I will also print out any related Marfan information that I may need at the appointment. I have no idea what to expect at the clinic. Or what to tell G to expect. What kind of treatments should I prepare for --- could it be as simple as custom insoles for her shoes? Braces on her ankles? Who knows. Guess we will find out tomorrow.

Update:  Yep, typical flat feet.  All joints have great flexibility and range of motion but are all tighly intact the way they should be.  Her hip cracking doesnt seem to actually be cracking but a tendon next to the hip joint that "cracks" against the joint when she moves her hip in a certain direction.  For now, we are trying out insoles in her shoes to see if that helps to alleviate some of the pain/discomfort in her feet.  A follow up in 6 months as well as adding an ortho appt to the annual Hopkins trip.

Wednesday, October 19, 2011

An Update More Than A Year Later

So many things have happened since the last post.  Seriously, it has been the most eventful year of my life.  Some amazing expanding our family with the most awesome baby boy ever!!!  But also the scariest moments of my when B almost died from internal bleeding.

I have another blog -- one where I talk about my life as a working mom.  Marfan Syndrome comes up as well over there.  So in an effort to catch you up, here are links to the most important events of the past year.

The Hubby's scary medical emergency

The newest member to our family -- Baby W

I will be back --- several posts in the works now --- G has some issues that are starting to impact her daily life and The Hubby is still recovering from his summer ordeal.  And I am just trying to keep us all moving forward.

Wednesday, August 18, 2010

Annual Visit

Yesterday was full of nerves - the annual visit to Hopkins for B and G's checkups at the genetics clinic.  The result of the 6 hours worth of doctor appointments - status quo.  And I am just fine with that.

G has always gotten a good report.  B, on the other hand, not so much.  It seems like every time we talk to someone in the medical field, Hubby needs this or that or something else.  We both feel this way.  This time, though, was different.  While he is getting a referral to see one of the other rock-star cardiologists at Hopkins for a consult/review, he got a good report.  No surgeries in the near future.  Meds stay the same and we even got to add the miracle drug that is currently in trials for Marfan patients.  (And yes, I AM that excited about adding a medication - this med is doing remarkable things for Marfan patients with the kind of aorta damage that Hubby has.)  

I woke up this morning feeling so much better.  We got through it - surgery #2 is over.  Yep, Hubby will tick forever but with a good report from the Hopkins docs, I feel like I can relax and move on from that whole surgery management (thats what I call my role in the procedures!).  

The next hurdle starts tomorrow night. Last week B went in for a sleep study. The results were not surprising,,,,to me at least - sleep apnea - positive.  Looks like a CPAP machine is joining the family.  Tomorrow B goes back to the sleep center for a machine test and then we bring one home.  I am sure the machine will be irritating to us both but getting a real night's sleep is so important that it will be worth it.  I wonder how he will feel after getting a restful nights sleep - bet he feels like a whole new person!!