Still on the fence on if the surgery is worth the risks. So I asked him if we did more testing would that give us any more info. Heath's last MRI was in Nov and was to rule out a twisted neck. Now that we know he has Chiari I asked him to do the CSF MRI, and a full spine to look for a syrinx or teathered cord.
Ok how to start. I'm going to have to go back a few weeks so this may get long.
On March 11th I got a phone call from the Nero S nurse and she read me the Apnea results and they are not good. His sleep study was 6 weeks ago, so after that wait you think the news of what we are doing next would be better then "come back for a visit in 3 months"!!!!
So Heath's MIR went ok. He was hungery but not upset to bad before it. We where the first appt. He ate at 10pm and I could have nursed him at 2am but he did not wake up. By 6 we where at the hospital and 6:30 all checked in, he had fun playing with the toys and hand foam in the wating room. The Dr arived at 7 and brought us back to start all the questions and talk about what to expect.
Heath had his 2 year well visit yesterday and the pedi said as soon as she gets the results from the MRI she will call me so I should know before Thanksgiving (MRI is set for Nov 17th)!!! He is up in size from the 5th% on the charts at 18 months to the 12% now. He is not doing any of the 2 year milestones yet but is making progress and can do most of the 18 month ones, now.