Neurometabolics Appt

I have not updated in ages so I figured I should tonight. We had Dawson's Neurometabolics appt on Monday, we waited 16 months for this appt but it was well worth the wait. This was the first appt at Sick Kids that I did not walk away angry,disappointed,sad or mad so I guess that is a good thing :)

We got there early so I figured we could get him registered early than walk around a bit before seeing the Dr. But they took us in right away and we seen the Dr right away (WOW) that NEVER happens at Sick Kids lol. The Dr was amazing, she spent an hour and a half with us (NO students or nurses, just 1 on 1 with the Dr). That never happens.......We went over his entire history from birth until now, all his pains, uti's and anything funny in his blood over the years (liver enzymes and ck levels ext). I also left her some video to look at.

So she thinks that this is a joint issue (arthritis) but he does have a few things that makes her think there might be a metabolic issue also (mainly his CK levels being so funny) so she ran some blood/urine tests to "rule them out". I also told her about the new pain he has in his right hip/groin area, we thought was a pulled muscle but after 2 months it is still there so his P/T told me to bring it up to be safe. The Dr will call with his blood test results and wants to see him back in 6 months. She promised she WILL get to the bottom of this:)

After his appt the nurse gave him a huge pixo maker lol and he got tons of stickers a new car and a Sick Kids hat for being such a brave boy, and a brave boy he is...He is my Hero. It was a very long day and by 5:30 he was hurting bad. Its a good thing mommy makes sure to bring all his meds when we take the train or it would have been a long train ride home. I must say he did great though since we no longer have a stroller he fits into so he was on his feet all day.

We have Neurosurgery follow up next week to find out if he needs the tethered cord realise surgery still or if we can hold off a bit since he has been using the toilet for about 2 months now (day time only). I will update on that once we know more.

I have a few more updates to do about Emma and lots of CUTE pics to post, but that will have to wait for another day...