Quickie

Happy Easter!

Quick update:
Houlder:
Wednesday

• released from hospital, pain still horrendous

Thursday

• One of medicines made Houlder throw up.  Afterward he felt better in that his head cleared.  Houlder decided that he was tired of meds making him foggy -- stopped everything except in absolute agony.
• Thursday phone from our pediatrician telling us there was an unusual finding in spinal mri.  Had we heard from doctor -- no.  Radiologist is a Collegiate dad whose child is friends with Houlder.  Nice connection.  
• Our pediatrician trying to get Houlder into headache clinic at UVA.  Anyone know Dr. Rust?

Friday 

• Acupuncture which he mentioned in his blogging debut. 
• William goes to collect spinal mri disk and goes to pediatric neurologist's office to pick up other disks.  Doctor talks to him about spinal for 40 minutes.  He wants to run a test that he has never run and needs to consult neurosurgeon.  Radiologist is consulting with head of radiology on what he saw.  There is something off but not in an easily classifiable way.   
• Our pediatrician has started sending Houlder's case out to be studied wherever folks are interested in studying this. 

Saturday and Sunday

• Pediatrician calls again to check in with me.  He still has not heard from pediatric neurologist.   Our doctor is going on vacation but has sent Houlder's file to guy at UVA and clinic is supposed to call.  He has sent file onto guy William and I met on Thursday for Frazer.  

Frazer:
Thursday

• Met chief of pediatric neurosurgery about the chiari malformation.  
• The CT scan from Frazer in October 2000 shows the chiari.  CT's are not the typical way that one views this situation.  
• This guy did not feel Frazer's mri's offered the optimal view of the chiari, the ability to asses the size, and his cerebospinal fluid.  He ordered another MRI and a spinal mri to check on possible tethered cord and any other condition that sometimes coexists with the chiari.
• Discussed sedation the mri.  We mentioned the need to do this asap so that we could move forward with heart repair.  He said that he would mention it to pediatric cardiac surgeon that night
• Emailed fellow about scheduling Frazer's ASD repair (hole in the heart) and mri. 

Friday

• Greeted with email from ped. card. surg. that they needed to do MRI first and they were trying to move it along.  We are certainly impressed with their willingness to communicate and the sped.  Gratitude.

As of today, we are waiting to hear from ped. neur. surg. about date of mri for Fraz.  Tomorrow I will call ped neuro. for Houlder to find out the status of what is the next step.  Will also run Houlder's films to ped.neuro. surg. to look at the rest of Houlder's case.