Wednesday, January 11, 2012

National Institute of Health Day 3

We stared our day bright and early this morning!  Ethan loves taking the "bus" over to the Clinic.  You can tell that he thinks he is big stuff sitting up in the seat all by himself!

When we got to the clinic he had some blood work drawn after fasting.

After that we headed over to Rehab to meet with a Physiatrist.  I had no idea that Physical Therapy had actual Doctors!  He was a wealth of knowledge.  In fact he took one look at his AFOs and decided that they needed adjustments made.  He wears cascade AFOs, he told us they were too long and was not allowing Ethan any flexibility in his step.  He said it would be fine for High Tone kids which is opposite of what Ethan is - he is low tone.  They made some adjustments on them and this kid is almost running around now.  Crazy!!!  He is also setting us up with a Pysiatrist at Children's Hospital in Richmond to follow up with.  The PT and OT also gave us some great advice and some things to work with Ethan on.  I can't wait to share them with his Team at School.

Dr. Paul was great!  He got right up on the table and worked with Ethan!

From there we headed over to dermatology and they took at look at Ethan's skin and birth mark.  Nothing really new from that visit.

After that we headed over to Radiology and he had a scan of his left hand to tell what his bone age is.  Who knew you could that from your left hand?

We headed back to our room and met with the Endocrinology Team - all 6 of them.  We found out that Ethan's sugar level in his spinal fluid was 77.  Normal range is 44.  His fasting A1C is 5.7.  With Chris's diagnosis of Type 2 Diabetes and his Mother's Type 1 Diagnosis and Ethan's labs they told us that Ethan is considered Pre Diabetic.  They changed his schedule a bit tomorrow to do a 3 hour Diabetes test on him.  Based on what they saw on his labs today he may have a diagnosis of Type 1.  That was a bit of a curve ball.  But when it comes to Ethan, I've learned to just go with it...

They have about 6 different Genetic Syndromes that they think Ethan could have.  One of the ones that has been spoken about a couple of times this week is Aarskog Scott Syndrome.  This is the same Syndrome that the Genetic Doctor at UNC mentioned but our insurance would not pay for the test. We are having it done here, so we will know for sure.  We have been down this road before so until we know for sure I'm not doing much research...but I do know that it is not fatal and that is all I need to know right now :)

We came back to the Children's Inn and hung out in front of this warm fireplace...

I also got to facechat with the other Hams...I'm getting homesick now and am ready to be home with all the Hams!

1 comment:

Gwen S said...

Praying for a good day today for you all and Ethan!