5/10/16 Spina Bifida Clinic

Today, Ren had Spina Bifida Clinic.  This means we left our home at 6:30 to be at the clinic by 7:20 for a day of appointments with many of her doctors.  It is great because we meet with all her specialists in one place, in one day.  It is hard because we we meet with all her specialists in one place, in one day.

The morning started out with an ultrasound on her kidneys and bladder.  It’s important to check the health of these organs regularly; if there is any reflux (the backward flow of urine from bladder to kidney), then we need to address this to prevent more complications.  When we met with the urologist later that morning, he relayed that everything looks good, so yay!

Ren then met with the speech pathologist to have a speech evaluation this morning, as she is going to receive speech therapy there during the summer months.  Nothing new here; all her weak areas we already knew about.  She then had an OT evaluation.  The therapist saw nice improvement in some areas since the last evaluation.  Yay!

We also met with the physical medicine/rehabilitation doctor, the orthotist, and the physical therapist.  Ren had her white straps on her KAFO braces changed to black (per my request!), and the inside bracket on her left brace taken off, to lessen the chance of her braces knocking into each other while she walks.  They had her do some walking and they decided she is looking pretty good, and it seems like they feel that moving onto working on using forearm crutches is the next step.  Ren will also receive some PT this summer, and that skill will be worked on during those sessions.  Yay, again!

The neurologist came in for a visit, mainly to make sure things are going okay.  And, guess what?  Ren has been off of seizure medication for 5 months now, seizure free.  So, yes, things are going GREAT!

A social worker met briefly with us as well, and she gave us information about a couple other resources that I had either forgotten about, or had not heard about.  Then, we met with the OT again and a rep from a medical equipment supplier, whom looked at her wheelchair and set up an order for a new, bigger seat cushion for her, as well as replacing a few parts that were chewed up by our annoying cute puppies.  And, finally, we met with the new pediatric neurosurgeon to “establish care.”  He reminded us of the symptoms of shunt malfunction or infection to watch for, and he is having us set up an appointment for her to come in for a CAT scan and x-ray of her brain and spine, so he can have a baseline to compare to if there are issues in the future.

Finally, approximately 8 hours after we had arrived, we were finished for the day.  But, it was a good day, with lots of good information, and good prognoses.  And, Ren, of course, was happy throughout the entire thing (first pic).  The hymn “Praise God from Whom all Blessings Flow” comes to my mind, and Psalm 136:1 “Give thanks to the Lord, for He is good.”  God is good, all the time.  All the time, God is good.  On good days, like today, but even not-so-good days.

Here are a few pics to end with:  See descriptions below pics for more info on each :)

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2nd pic:  Ren working hard being independent on the playground.  I have seen nice improvement in her ability to lift her legs up steps!

3rd pic:  Ren practicing walking at school with an aide.  This is most likely the reason for her growing leg strength, as she does this everyday for 10-15 minutes.

4th pic:  Ren with her cousin on a stroll.  Sweet memories!


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