Yet more advocacy, this time it is in the Public School System, so you need all the effort you can muster at times.

Xander finished his Preschool with an IEP that was revised for Kindergarten, it turns  out, to his detriment. 

Mom supplied the school nurse with all of his test results from school for Neurology, OT, PT, Hearing and sight.  We though we were doing well.  Turns out the nurse just filed them not even thinking that other people may be interested in them.

Then after a few weeks he still had not seen the Speech Therapist, on staff, even though that is specifically on his IEP.

Then other issues come up and we ask why his IEP was not being consulted?  The school finally acknowledges his IEP and then we start seeing a bit of action.  Like the Speech Therapist being scheduled.

We scheduled an IEP meeting to ask about additional services recommended in his last Neurological Evaluation and other issue like FM systems, and such, so he can hear the teacher, who is female, and has a higher voice.

We got into a scheduled 1/2 hour meeting with around 4 staff and an Advocate we called in from Children's.

After about 1/2 hour of some meaningful discussion and some blatant bureaucracy we finally got to the point of initiating an IEP review to see where Xander falls in being applicable for additional services.  Then more discussion and our 1/2 meeting was now almost an hour.

Life moves slow in a School district.  Business processes are slow, but schools seem glacial.   Even 10 days after the meeting we still have yet to receive even the paperwork to initiate the process.  Which they cannot do until they have their signed document.

It looks to be the start of 12 years of constant advocacy.

We were a bit naive in getting Xander into Kindergarten with and IEP and thinking that because he did have this document attached to him that actions would be taken on his best interest.  Seems that is not quite the case, unless you fight for those rights they do not necessarily get applied.

Advocacy;  it is sometimes quite incredible what lengths you have to go through to get people to notice there is an issue.

Xander is still having two, or more, reflux like attacks a day.  A week or so goes by and Mom phones up Neurology to find out what the results where.   They try to pawn her off on our Pediatrician, who has the results, but not us.  Mom pushes more indicating that she was talking to the people who did the test, why would she go elsewhere?  Finally she gets a RN on the phone who indicates there was an abnormal rhythm on the EEG.  We had a follow-up appointment in about 10 days, but that translates into 20-30 attacks worth of time.  Unacceptable.  So she pushes some more and we go in that afternoon.

Turns out he seems to be having seisures that show as reflux like symptoms. So we get a prescription of Trileptol to start trying to block the seisures while we go though the steps to see how to resolve the issue permanently.

We first need to get his brain activity mapped for a longer period of time and in more detail so he will be scheduled for a week long stay at Children's where he will where a fine mesh of sensors on his head.  They will then reduce his medication until he has a few seisures, they will then map steady state and seisure activity.

That will be the basis to see what further steps need to be taken.  There is an outside chance of additional surgery to remove any  tissue that may be causing the seisures, like scar tissue.  Something that we are no to crazy about considering he has been through two resections previously and they were both quite scary experiences with some frightening physical scars for Xander.  With him being older it will not make it any easier.

We will see what comes about.

Xander and Mom had a long day getting up early so they could go to sleep at Children's.

The EEG was scheduled after Xander started collapsing during his refulx attacks.  His speech would also be a bit slurred until after the attach wore off.

Xander had an EEG appointment in the early afternoon.  The issue is that Neurology needed him sleep deprived so he had to get up at 3:00 am.  Mom got up with him and tried to keep him awake.  The problem was that he had two boughts of reflux.  Lately when he has these boughts they suck the life out of him and he falls to sleep sometime after. 

They finally made it to Children's after a long morning.

Once at Children's they made their way to Neurology and the room where they were going to 'sleep'.  The only problem was that it was a small room jammed with electronic equipment.  Xander stopped just before going in since it probably reminded him of some stressful times.

Once Xander was in, the Neurologist marked the points on his head where the electrodes had to go.  Then she applied some cream and then the electrodes.  The finally wrapped his head in gauze.  She asked him if he wanted a look, but he declined.

Mom and Xander then lied down.  Xander was tired, but would not go to sleep.  He would close his eyes and then open them immediately when the Neurologist would walk through.  She was able to complete her tests and then Xander and Mom were free to go.  Results would take about a week to ten days.

They came home and then went immediately to sleep.  It was a fairly rough day.

Xander went in for his yearly eye check up.

It was a fairly normal check up for him, although they dialated his eyes, this time.   So when he came home he had big puppy dog eyes.

When Mom and Xander where leaving the Opthomologist said he was good for another 20,000 miles.

We attended another successful Pediatric Brain Tumor Foundation Puget Sound Ride for Kid's event.

One a nice, cool Sunday morning Mom and Dad led the way on the YZF to Remlinger Farms in Carnation, Washington for the 15th Annual PBTF Ride for Kids.  Xander and Willem were tagging right along in the Van with Baba & Gege who came down for the event.

This year Willem really wanted to go in one of the sidecars that come to take the survivors for a ride.  Bolstered by his brother's presence, Xander decided he would like to go too.  So Mom, Xander & Willem all snuggled into a nice BMW K1200 sidecar (enough space for two adults in the sidecar) for the ride.  Dad trailed in the pack with his YZF600R.

By the time the ride took off at 9:00 the sun was out full force and it was getting warm.  We rode through Issaquah, parts of Kent, Snoqualmie and finally back to Carnation, a nice 105 minute ride. During the ride the sidecar was so comfortable that both Xander and Willem took some short naps.

When we arrived lunch was ready so we picked it up and headed into the tent for the festivities.  The top fund raisers were recognised for their hard work, all year around and the Stars of the show, the kids, each had a small interview, and all showed us all their unique outlooks and personalities.  There was also a speech by one of the Pediatric Oncologists, from Habour View, informing us of the latest advances in Cancer treatment plus a speech from a Mom who had lost her child to complications from cancer treatment who made a plea to never stop advocating for these extra special children who are so brave in the face of adversity.

When it was all tallied up we had raised $100,033.  A nice target to surpass next year.  Pediatric Brain Tumors do not have the funding that Breast Cancer or Leukemia does, so it is up to us to help raise the cash to help the researchers in our relentless quest to find a cure.

We thank all of the friends and family who donated through us.  Your support is greatly appreciated and will help make that difference.

Pictures of the event can been seen here: 2006 PBTF Puget Sound Ride for Kids 

Xander has now started Kindergarten.

Time does fly.  We are so happy to have Xander reach this important milestone.

We were able to get Xander into a school recommended by his preschool teacher.  They have fine teachers and a great Speech therapist.

The class size is nice and small and should be conducive to a great year of learning.

We're looking forward to every day.

Xander went in to get the results of his Scope and lab results from the biopsies.

The results were not definitive.  There was no problem with the scope and all of the biopsies came back negative.  So there is no apparent problem. 

Since there seems to be no problems going in we are now going to concentrate on motility issues.  To that end we are starting Xander on time release peppermint pills and maybe Benefibre to make sure he is not having gas issues, or that his stomach is not clenching and causing the stomach contents up.

Xander is getting much better at recognising the symptoms and getting to some water before the juices come up his throat.  Which is much, much, better than helplessly watching him gag until the episode clears.

Xander, and his crew, went in today for his regular 6 month M.R.I..

We were dreading this M.R.I., not because Xander was showing any signs that there may be re-occurrence, but because it was scheduled for 1:30pm.  Which seems very late for and anesthesia based M.R.I.  No eating for 6 hours, no clear liquids for 2 hours meant that we were going to have someone begging for a glass of water.

Baba came down to help, and Xander asked that we all go, so Mom, Dad, Baba & Willem all accompanied Xander to Children's.  Xander (and Willem) did amazingly well not having anything to eat or drink for the allotted times.  He asked only once to get something to eat and Mom told him that because of the M.R.I. he would have to wait until after and he did not ask again.  Amazing.  We definitely underestimated his resolve.

He went under with no problems, so the rest of us took off to the cafeteria for a quick snack and to snag some chips for Xander when he awoke.

This M.R.I. was especially long since they were also M.R.I.'ing his foot from multiple angles to get some views of the lump on his foot and his bone structure.

But soon enough he was wheeled in and took a fair snooze.  He also awoke pretty groggily and had to be carried or stabilised while standing.  In the meanwhile Xander's RN came in and told us the M.R.I. was clear, which was, of course, welcome news.  Since Dr. Geyer was out of town, we had the clinic in the recovery room with Corey and then went on our way.

Since the boys were so good, Baba treated them to Burger and Fries.

Next is a follow up with gastro-intestinal and then find out the feedback from the Podiatrist. 

Xander also starts Kindergarten at the end of the month and is cutting his first adult tooth, which is pushing his lower front tooth out at a pretty quick rate.  Looks like a visit from the tooth fairly in short order.

The Pediatric Brain Tumor Foundation's 2006 Ride for Kid's is happening mid September as well, which should be quite fun again.  We will see if Xander elects to take a ride in a trike or side car this year.