Upcoming Spinal Defects Clinic

This is just an update for those of you who may not know what a spinal defect clinic is.  It is often called a "spina bifida" clinic, but no matter what you call it, its an all day doctor-palooza.  In Florida there are three such clinics: one in Jacksonville, one in Orlando and one in Tampa.  So families from North Florida and the panhandle attend the Jacksonville clinic when it runs. It happens several times a year. In the beginning a child may be seen twice a year. After he/she gets older, they may go only once a year. Our first clinic will be Feb 10th. We will spend the day before at Nemours getting kidney ultrasounds to check for reflux  (to determine if we need to start cathing her) and we will also get a back x-ray to check for signs of early scoliosis.  They will want those tests when they examine her.

Then, the next day is clinic!

We will arrive at clinic at 12:30 and be assigned a room. We'll have our snacks and some books or magazines with us, along with some toys to entertain Evangeline since we'll be there all afternoon. Each of the doctors (some of whom we have never met before) will rotate through and visit us in our little room.  We will be seeing orthopedics, urology, GI, developmental pediatrics, neurology, neurosurgery, social workers and MORE! At the end of the day, all the doctors, nurses and other practicioners meet and compare notes on each patient. From that meeting a report is generated that looks at the whole child. We will get a copy of that report a couple of weeks after clinic. 

Naturally this experience is convenient in that we can see everybody at once and advantageous in that the doctors actually get to talk to one another about Evangeline; however, it is still kind of nerve wracking because you never know what may result out of such a clinic. They may decide to add in additional treatments, change an opinion about an existing situation etc. My biggest concern is urology. I am not sure how they will want to handle her frequent bladder infections. They may do nothing because she doesn't run a fever with them (they are asymptomatic). Or they may want place her on preventative bactrum or begin catheterizing her once or twice a day. None of these options are bad, they are just nerve wracking as I am stressed out trying to figure out what is best for her. It will be nice when she is old enough to voice opinions on such matters for herself.

In related news, I am still trying to get the insurance waivers sorted out to get in to see the opthamologist... and I am also having problems getting her PT eval scheduled. Although, I do hope to get those both scheduled soon. Her right leg is so strong that she gets really close to pushing herself over during tummy time, but her left legs doesn't do much but stay locked into place. I don't want to neglect anything I should be doing to encourage her left leg to do what it should be doing!  So I wish I could just contact the PT myself, but on her insurance Early Steps seems to be the only game in town for those types of services. I must remind myself to be patient.  :)  So, that is our update.  Pray with us for a positive clinic experience.  I will report back here when we get the results.  :)


Meanwhile, here are some verses from one of my favorite OT books... Isaiah.  Its something I am meditating on as I contemplate where I am heading and what God wants for my family and every family out there. Sometimes we can't imagine the destination cause the journey is kinda screwy, but goodness is out there...and we are heading someplace good...to that Place of God's Desire... we just have to keep on walking, running, cycling, swimming, or rolling towards that destination.

Isaiah:55:8-13
“For my thoughts are not your thoughts,
neither are your ways my ways,”
declares the LORD.
⁹ “As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.
¹⁰ As the rain and the snow
come down from heaven,
and do not return to it
without watering the earth
and making it bud and flourish,
so that it yields seed for the sower and bread for the eater,
¹¹ so is my word that goes out from my mouth:
It will not return to me empty,
but will accomplish what I desire
and achieve the purpose for which I sent it.
¹² You will go out in joy
and be led forth in peace;
the mountains and hills
will burst into song before you,
and all the trees of the field
will clap their hands.
¹³ Instead of the thornbush will grow the juniper,
and instead of briers the myrtle will grow.
This will be for the LORD’s renown,
for an everlasting sign,
that will endure forever.”