Thursday, January 12, 2012

National Institute of Health - Day 4

Another busy day but fun and we again we learned so much!

We started the day with a 3 hour diabetes test.

He did great drinking the sweet stuff!

They took his blood 4 times during the 3 hour period.

During his testing we had other visits and his nurses just came and found us to take blood.  It was great, he wasn't confined to his bed all that time!

He had an abdominal ultrasound.  Followed by a visit by the nutritionist to talk to us about his diet and changes we need to make to help keep his blood sugar in check.

Next up we had a visit of about 30 different doctors from all over the World stop by to get a look at Ethan.  Ethan had a ball.  He loved all of the attention!  In fact the Director of the Undiagnosed Disease Program picked him up and showed him off - he was in heaven!

After that we travelled over to the Eye Clinic so that the Eye Team could take a look at his eyes.  They already looked at the back of his eyes during his sedation but wanted to see how he tracked items.  While we waited for our turn, Ethan had fun playing in the kids waiting room.  This place is awesome for kids - everywhere you turn they have something to keep them entertained.

When we got back to our room we had a visit from Neurology.  They asked a lot of great questions and gave us some insight on Ethan's behavior issues.  Turns out some of his issues we are dealing with are due to a Sensory Disorder.  Makes perfect sense.  A lot of things that I have been stressed about are part of his make-up...things like the constant chewing on everything, slapping his ears, covering his eyes, freaking out in stores or at Romp n Roll when more kids show up than normal.  Tomorrow we meet with a behavioral specialist so I can't wait to learn more about ways to help him!

When we were done with that, Ethan was able to get his IV out.  I love how the nurse just got right down to his level while he was playing - he was totally not freaked out at all!

Today we finished up around 2 and we were able to come back to the Inn and take a nice long nap!  Much needed!!!

We ventured out to Whole Foods to have some dinner and Ethan had a complete meltdown, I think the really loud noises and bright lights were just too much for him after all the stimulation today.  We got our food to go and came back to the Children's Inn. 

Ethan checked his mail and got some pretty cool goodies!

We ended the night hanging out with Vi the Therapy Dog who lives here at the Children's Inn.

Playing in the elevator - which he is obsessed with by the way!

And taking a ride on a pretty cool ATV in the playroom!

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