Dad and Xander headed into Children's for Xander's yearly Audiology Exam.

Xander's hearing is stable with a loss of hearing starting at 8,000Hz. 

The family attended the Puget Sound Ride For Kid's 2007.

It was a cool and wet morning that transformed into a beautiful, sunny day.  We had a great ride and a wonderful celebration.

Mom, Xander & Willem rode in the BMW Sidecar again, Mom is thinking that she needs to ride on the back of the BMW next year.  Dad rode his own bike right behind them.

Dad also provided the Parental Speech this year.  It was a little nerve wracking but was a great chance to thank all of the participants, the coordinators and to help get some key points across on what it is like to be the parent of a survivour.

So a few months after his Surgery things are looking very well.  We talked with Neurology and they are inclined to start reducing some medication that we think is causing some of the behavioural issues we see.

So we dropped his afternoon dose (250mg) of Keppra.  With the alteration he had one or two rough days and then his demeanor started to lighten.

After a month and a half Neurology dropped half of his evening dose (another 250mg) of Keppra, so now we are down to half of his Keppra dosage.

With the second drop in medication he started smiling and joking a lot more.  He is further back to the child he was before.  His taking medication, at the moment, seems like going through the motions.  Especially with all that he still takes.  But, it is still necessary since his brain is still healing and getting used to not having seizures.

We are looking forward to 6 mo post surgery when we will start reducing his medication for good.

So Xander has started Grade 1, in an integrated class.  Where he spends some time in the integrated classroom for more in depth activities in certain areas.

His home room teacher is great and does not put up with his B.S. but is yet fun and engaging.

He is really testing his integrated class teacher so we will see how she does in a few weeks.

All in all he is enjoying school and likes to go. Of course his favourite 'class' is recess.  This year he also takes the bus home which is a great step forward for both him, and Mom.

Xander was supposed to have had Dental Surgery to cap two more back teeth but scheduling conflicts forced us to re schedule.

They were supposed to perform the service during his next M.R.I., but that was ruled out so now it will be a date close to the M.R.I.

His next M.R.I. was planned to be an awake M.R.I., so that would not have worked anyway, since he has to be under for the caps, strangely enough.  The awake M.R.I. should be interesting.

Xander went back to see Neurosurgery and Neurology for the first time since right after his surgery.

We were hoping we would be able to start getting his medication reduced at this meeting.

Neurosurgery checked him out an noted is left side seemed better than before.  It is about to the same level as before the surgery.  All in all he is in good shape.

We had a fairly lengthy discussion with Neurology.  We discussed when we could start reducing meds and they indicated about 6 mo after the surgery.  The reasoning being that they want the neurons that had been reinforced with abnormal neurological activity, due to the seizures, to normalise to the lack of activity.  Then we would start removing the meds.  However due to our concerns with some of his behaviour lately they actually removed 250mg of Keppra (1/4 of his daily dose) from his afternoon dosage.  This is great since it removes meds he has to take while in school. 

After this we need to schedule Endocrine and Hearing appointments.

Xander had his 6 month dental check up.

We found that he had additional cavities in his bottom teeth on the right side.  So he will have to get caps to match the ones on the right.

Although to do this he will have anesthesia, but to do that he needs to be cleared which is yet another appointment.

The dentist also recommended using products with Xylitol; either toothpaste, wipes, food additive or even gum.

Also, Xander has given up two teeth to the Tooth Fairy lately.  One of his front teeth and a lower canine.  Now he has a perfect place to put a straw while drinking his juice.

The good news (knock on wood) is that Xander has had no seizure activity since the surgery. The Neurosurgeons at Children's are quite simply, amazing.

The incision on his head is almost all healed up and his hair is now about 1cm long.

He has made a visit to the Grandparents but had to make a trip back after he threw up.  Mom took him in just to make sure and he seemed to be fine.  There have been no further issues since.

We will be visiting Neurology in September to plan out his medication reduction plan.   We only hope that will help Xander more and more as he starts Grade 1.

He will also be visiting the Dentist and check out those two wobbly teeth he has had for some time.

The bad news is that one of Xander's young friends, also a Rhabdoid Kid, passed away about a week ago.  He had made it all the way through treatment and had been home for a few months and was coming back to get his tonsils out.  But his Mom noticed some subtle behavioural changes and had them do a CAT scan before the operation and they found the tumour had returned by the brain stem and all down his spine.  There was nothing the doctors could do except wait.  He passed about a week after the CAT scan, and about two weeks after his 2nd birthday.  All this even through he had a complete blood test just 3 weeks prior to the CAT scan.  Extremely saddening.  This experience reaffirms that you have to enjoy every day while being constantly vigilant.  It is also why birthdays are not just celebrating a child getting older, but another year that they are here with us.