I can see Caring Bridge is now allowing us to add 51 photos vs the original 9 photos.  I will see what I can do to max out the photo allowance in the next few days. 

Due to yet another mix up in the neurosurgeons office, surgery will be pushed off until fall.  It seems they like to make automatic appointments for you and then don't tell you they made them.  Then wonder where you were.  *sigh*  We won't be able to get him in until August now because of a paper work mess up. 

I think this automated appointments issue is one of the things I hate most about the pediatric medical system here.   It takes a lot of the control away from the parent and caregiver.  You often get stuck with appointments at inconvenients times and days, you aren't involved in the selection of the doctors.  They often fail to tell you which doctor you are seeing or when the appointments are and they wonder why you never showed up or why you can't remember the name of the doctor who stopped in a max of 5 minutes and quickly called out his name.  Doctors seem to be of decent quality but in the name of making the system more efficient and automated they are causing loss of time and other mass inefficiencies. 

Alec has been very bored this summer surrounded by adults so I have enrolled him in two 0-5 mixed age music classes.  One is taught by Gymboree and the other by Fiddlesticks (a Music Together studio).  Both music teachers have been really welcoming of Alec's differences.  We went to the first Gyboree class last week and he giggled and played bashful through most of it but the grin on his face was a constant. 

Tomorrow he goes to meet with his new physical therapist.   We have lots to discuss.  His wheelchair needs repair.  We need to evaluate whether the seating needs to be replaced and if new crossbars need to be ordered to expand the frame. 

I would also like to talk about either adding some sort of assisted self propelling options onto his current chair, the Quickie Zippie TS or trialing a light weight self propelled chair.  I think he is ready to make this step since I have had to stop him from pushing off of store displays to get to the coveted kid's book section.   We also need to either outfit him with either a gait trainer, walker w/suspended support or a stander.  I am at a cross roads on which he needs.  His school therapist says he is not ready for a gait trainer but he is beyond bored in a stander.  He may not be able to walk but this is a child that loves to move and is significantly motivated to achieve more by vesibular movement activities.  How else do they think this 32lb child managed to propel a 60lb wheelchair down an aisle to get to the Elmo books.

I am also trying to get some IQ testing done.  There is no doubt his syndrome has left him with a form of mental retardation but I need an official report from a doctor stating this or they won't let him on the Mental Retardation Medicaid waiver list. 

I guess that is all I have to update for now.