NIH Day 4

Today was long and interesting. I'm really tired so I'll just share the highlights.

• Caleb had a Dexa scan this morning. I guess it checks for bone density. The test took all of about 20 minutes even though we were told it took 45. I asked the Tech why the test was so short since we thought it was going to be almost an hour and she said that Caleb was a pleasant surprise. He's such an easy-going kid that he just laid on the table and when she asked him not to move....he didn't. Most kids freak out so they allow a 45 minute time slot. Anyone who knows Caleb knows that his middle name ought to be mellow!

• He then met with an occupational therapist who gave us some great ideas on how to help Caleb hold a pencil better to write. She also gave us a hand brace fitted for him and some pencil grips.

• After lunch, Caleb had a blood draw from his hand. They put numbing cream on about 10 minutes prior and he didn't even flinch! They took a bunch of blood too for research purposes.

• Then a Pediatric gastroenterologist came to the room to visit Caleb. We discussed his constipation issue and how to treat it better. She also suggested that we trial a milk free diet for awhile. That'll be very hard since Caleb loves his chocolate milk!

• We finished the day with more neuropsych testing. We'll find out tomorrow how Caleb is doing cognitively and I may take the results with a grain of salt. We'll see...

• Now for the interesting part... We had to take a cab to a New Balance store to get Caleb a pair of shoes that his new orthotics would fit into. We left the NIH at 5:15 pm straight into rush traffic into Washington D.C. and our cab driver barely said a word and drove like a MANIAC! I at least put up 3 prayers for safety. When we got back to the NIH we had to go through the check point which required us to get out of the cab, walk through a metal detector, show our ID, etc. EXCEPT guess who forgot their ID?? I did ( Heather ). Yaa, I wasn't even sure they were even going to let me back in the place. It was a huge deal! Thankfully, I had Caleb's hospital wristband in my jeans pocket to prove that he'd been in the hospital!

• After all of that, we get back to the Children's Inn and I realize that my cell phone is missing!!!! It must have fallen out of my coat pocket into the cab! I called my phone and on the 8th ring a man with a heavy carribean accent answered......the cab driver! Thank God! He ended up coming an hour later to drop it off.

• Tomorrow is our last full day and Caleb is scheduled for an ACTH stimulation test...they'll need to place an IV. He'll have a skeletal survey, skin biopsy, Echocardiogram, and an EKG. We finish the day with stopping by rehab medicine to make sure Caleb's new shoes work with his new orthotics. Hopefully, they do because we are not doing the cab ride into D. C. again! Yaa, we'll pass on that. :)