Thursday, Friday and Saturday - December 21st through December 23rd

Good evening,

Tori continues to do well prior to her journey to China which is now 18 days away and counting. Her sleeping trends have been great, her awareness has been good and her anxiety levels have been manageable. However, Tori did have another seizure early Friday morning but that has really been the only issue she has had during the past three days. Maria walked into her room during the final moments of the seizure. It has another one where she was sleeping soundly and must have had something startle her. Those are very hard for us to catch unless we are in the room even when pulseox monitor is connected... The is NO DOUBT to whether she has has a seizure or not afterward because all of her limbs are completely loose and limp. I'm talking about 'spaghetti noodle' type limp in her arms, hands and fingers. You can move them into any position desired post seizure. It is really quite strange... Her brain must not be firing ANY signals to her muscles after a seizure for some reason.

Tori has had chocolate pudding, cheese, popsicles and even some spaghetti over the past few days. The visitors also continue to stop by. Guy also arrived Thursday evening from Boston for the holidays and we are excited to have him here!! :-) Tori spent Friday Saturday night in her wheelchair watching the Utah Jazz professional basketball team play with Grandpa Schmanski and I. They won another close one!! :-)

Now for the bad news update and my highest stress provider... Tori still DOESN'T have her passport... The Passport Agency received the doctor's letter stating she cannot sign the passport but now they want additional information. You see, when Tori was born the hospital lost her birth certificate so we went through a long process about 10 years ago to get her one. We had to get the official doctor's notes from the birth itself and had to also get several signed and notarized affidavits from birth witnesses which included myself. You MUST already have that information to actually get a birth certificate from the State of Utah and of course we had it. But for the US Government that isn't enough... They MUST have the additional information as well... LUCKILY, I kept that additional information in Tori's file and I have already sent it back via certified mail. With Christmas, the earliest we can get it now would be Wednesday or Thursday of next week. I call every single day for an update and if I hadn't called on Friday I would have never even known they need the additional information. Let's just say I am a bit frustrated at the moment... So once again I ask that PLEASE, PLEASE come through for us good ole' US Government...

On the stem cell news front, here is an article on open brain neural stem cell transplants . Again, I believe for Tori the research on this is far too early and experimental. But with positive results it wouldn't surprise me if it was commonplace within a few years. Here is one more on brain regeneration after a stroke . Strokes typically cause an anoxic brain injury like Tori's due to lack of oxygen to the brain but Tori's injury unfortunately is on the severe side of the spectrum... Hopefully some stem cell treatments will help promote her brain regeneration.

Thank you all as always,

-Tim