this appointment was actually a disappointment. i dont know why it was schedualed since the doctor was the one that scheduled it and then asked today why we are here. toryn hasnt grown any in the last 4 months that was considered growing he gained  5oz and .3 cm. we have appointment with the gentics specialist in july for chromosome testing. this will tell us if he has russell silvers syndrome for sure. they have a wide growth variation for him. anywhere from 4'11-5'5 depending on treatment and diagnoses. we have opted out of growth hormone and its still being pushed on us. the doc also suggested that we hold him back a grade so that he is older and closer to the same size. well most  1 yr and 4 month old children are taller and bigger then him. hes 19lbs 11oz. and 31 inches tall. i hate run around and with gas prices out here between $4. 05 - $4.23 a gallon 98 mile trips are expensive. todays 51 mile trip was a big chunk of out weekly gas allowment. it bites. i wish they would just come down here but no we have to go to seattle in july when gas will be around $4.50. i am seriously thinking paratransport. ugh this bites.!!

Add A Comment


Jun. 3, 2008 at 1:54 AM well i hope the other tests go well

Message Friend Invite

Jun. 3, 2008 at 1:56 AM I am sure he will be fine.why can't you ped do the genetic draw and send it mine did.Then we only had to go for a result follow up later.It sucks that they are trying to push stuff off on you but they are looking at his future in all reality and trying to help you make the best most informed desicion for toryn.I hope you find the answers you seek come july

Message Friend Invite

Jun. 3, 2008 at 6:47 PM

I hope all goes well at Toryn's genetic appointment. We find out about RYan's RSS results at the end of July when the Genectic Specialist come back to Alaska from Seattle.

I hope whoever does Toryn's Blood draw is gentle. I agree with misskitty. Why can't your local Dr. do the blood draw? We only had to go to the lab in our local hospital and they sent the blood to Seattle Children's Hospital. You should ask on that. Then it could be done before you see them in July.


Good Luck to you and Toryn, you will be in our nightly prayers.


Message Friend Invite

Want to leave a comment and join the discussion?

Sign up for CafeMom!

Already a member? Click here to log in