Clark’s first appointment was at 7:30am. We were late because we underestimated how long it would take to schlepp two kids along with all of the gear that we thought we had efficiently packed. You would think that 6 years and 3 kids into this parenting gig we would be a little better at that. But we made it, albeit a little late.
Clark’s first appointment was with the Pediatric GI specialist. Mornings are his best time so he was full of energy and he was thrilled that he got to spend the appointment stripped down to his diaper. After we detailed our concerns and the resident and the specialist looked at him, they ordered a few more tests in addition to the ones we had planned. They also decided to hold off on having his blood work done until he has seen the Pediatric Neurologist since she will most likely have tests she will want to have done on his blood. In addition to the upper GI video swallow test, they will do a lower GI test. We will also be seeing a geneticist so they added in those appointments as well.
Because we no longer needed to do a blood draw we had a pretty long break between appointments so we were able to go back to the house we are staying at for a few hours. Clark was able to get in a good nap, which he really needed.
In the afternoon he had an assessment with the occupational therapist along with an upper GI test. The upper GI test consisted of eating and drinking different variations of liquids and semi-solids mixed with barium while taking an x-ray video. Clark detested the barium and took one sip or bite of each item offered him before refusing to take any more, so they did not get a high volume of videos but enough to see that his swallow is normal and he is not aspirating. The therapist also walked us through some things we can do to try to encourage him to eat different textures.
Tomorrow we have an appointment to start the process of genetic testing, as well as our first appointment with the neurologist, and a finally his blood draw. So far we have a few other appointments that are scheduled for Thursday as well but, obviously, no neurology tests have been scheduled yet.
Clark did pretty well today but he is really tired and the barium seems to have upset his tummy. Hopefully he will be able to get well rested tonight and feel a little better in the morning.