Busy Week

This is going to be a very busy week at our house.  Jaxon has 5 appointments 4 of them at Children's Mercy.  Today we had 2.  1st was occupational therapy for eating and 2nd was urology follow-up from his surgery.  His OT therapist, Jodi,  was very impressed with his head control this month.  Since we only see her once a month she was amazed at how much he had grown in length.  However growing in length means tightness in his muscles so stretch stretch stretch she says.  He has hip helpers they are like biker shorts with the crotch sewn together to help with keeping his legs together and building strength in his hips.  Jodi would like to see him wear them all day long while we are at home.  I'm gonna just say now, i doubt it.  He isn't a real fan.  We are going to start with 3 hours a day and try to work up.  She was very excited about his tongue play, and how many different tastes he has tolerated in the last month.  We still aren't working toward volume that will come later.  We have also been working toward using a straw.  He is very fascinated by the fact he sees us using one so he wants to try.  He takes water pretty well.  We just put the straw up to his lips and when he accepts it we let water in.  He has not yet mastered using his lips or any amount of suction.  This appointment is probably the best appointment we have every month.  Jaxon loves Jodi.  She can make him so angry and the next minute he is smiling at her.

Next was urology.  It was a very quick appointment to make sure everything from surgery was looking good.  It went well and we will go back in 6 months.  This is something we will have for most of Jaxon's childhood.  As he grows it may need repaired or patched as the Dr called it.  Dr Murphy his urologist is probably one of the most personable Dr's we have ever met.  He is just very down to earth.

Since its premature awareness month I'm working an information table at the hospital on Wed over the lunch hour.  It should be fun.  Then we have a vision specialist and physical therapy appointment in one at home in the afternoon.  This is through TARC.  Phyllis will evaluate Jaxon's vision while he has physical therapy.  She will then send her report to his opthamologist for our December appointment, so we can get a better idea how his eyes are responding and weather or not further treatment is needed.

Last, on Thursday we will see his cleft palate surgeon and an Ear Nose and Throat Dr.  Jodi, Jaxon's OT therapist was not happy with the course of action the cleft palate team suggested so she pushed for us to see his surgeon again and a ENT Dr for a second evaluation.  Then Jaxon is going to join me in Christmas shopping.  Just me and the little guy hanging out should be fun.  Jason didn't think he wanted to stay up all day after working all night to join us, party pooper :)