Dancing Machine...

Jack loves to dance -- this is Lil Jon "Snap Yo Fingers" a silly song my kids LOVE! Never mind what Morgan is wearing -- it's one of Jack's under shirts she pulled out of his drawer and wanted to put it on!

Best Days!

Wow, Jack's had two of the best days yesterday and today!

He woke up with a smile -- and gave me lots of hugs and kisses...he played before breakfast and cooperated with getting dressed and sat very patiently waiting for the bus.  I think it helps that the mornings have been gorgeous here and we sit outside waiting for Miss J. to come get him.

Today at school he played "Classmate Bingo" and loved it!  He made a story book about the weather (using PECS symbols)  He said all of his teachers' names!! (Lo lo, Tish, Je, Tef) used his words all days long and knew it was snack time before they announced it (it truly shows he's learning the routine and paying attention to cues).

He had OT and Vision Therapy today.  His OT said he did some sensory input with him using a "ball bath" I can only imagine Jack LOVED this -- the note said he enjoyed it.  Jack also did well with his vision teacher and did a lot of nice things for her today.  Although he wasn't keen on naming colors today -- there's always another day!

It does my mommy heart good to hear how he's really getting into the swing of things and when he has good days, they are REALLY good.  I hope they are here to stay!

Ups and Downs...

I've been slacking in tracking Jack's behavior via the blog -- I guess because part of me feels bad for needing to share the not so great moments...but that's what this journey is!

This weekend was very trying.  We've discussed all sorts of reasons and tried to figure out if there were any specific triggers to those days where he's completely off and banging his head and shrieking with frustration and anger.  One thing we've noted is bowel habits.  When he's constipated he's more prone to meltdowns...has this resolved the issue?  No, but if we can really stay on top of keeping him regular it may, just may help ease what's been going on.  The other thing we've noticed is the behavior gets worse after an increase in Keppra.  We have two more increases to go -- it will take us into the first week of October.  Then, a few days after an increase, like today he has one of the best days...his teacher's note from today made me smile from ear to ear.  He enjoyed himself, ate his entire lunch and wanted to participate in the learning activities.

So we continue to wait and see.  Hopefully once he's on a full dose of Keppra and weaned off Tegretol we can get some normalcy back into Jack's day.  We do see the neuro in October for a follow up and to get a weaning schedule for the Valproic Acid.  Wouldn't it be awesome if this kiddo could take just one seizure med instead of three?  Fingers crossed!

Oh, and I know -- wrong kiddo in the walker, lol!  I have yet to have Jack and the camera at the same time!!  The picture of Jack is from this morning waiting for the school bus!

PS -- DHL came to pick up the wrong walker on Friday.  I have yet to see a refund from spinlife.com and have not yet heard back via email when I asked the status this morning.  This is the last piece of the mess...I will keep you posted!

Edited to add -- I had an email from them -- my money will post in my account this week.  I'll be very relieved!

"Reading"

Okay, well I know Jack isn't technically reading -- but his symbol recognition is really coming out! He names packages of food by the logos especially cereal.

This morning I was driving him to an appointment and we were going about 25 mph past walmart. You can't see the parking lot or the building, just the sign and he said "Store...balloon!" In fact we've always called it the balloon store because he gets one of those smiley balloons nearly every trip!

He also knows McDonald's (he'll start to sing old Mcdonald had a farm, and then ask for fries and soda!).

This is HUGE because symbols and abstract pictures are a huge part of using a communication device or picture schedule like PECS. If you would have asked me even a month ago if Jack could recognize symbols I would have laughed you out of town and said "no, we must use real photographs."

This is simply a huge milestone and I can't wait to start cutting out more logos!!!

Jack had his best day in a long time yesterday.  The school sent a glowing report on how he did during class -- science was his favorite subject, and he walked all over the school indoors and outdoors with his walker during PT.  He was happy and attentive and it continued into the evening as well.  He didn't cry or meltdown once.  It was the old Jack Riley!  I pray it stays or at least continues in this direction!

Ups and Downs, EEG Results

I spoke to Jack's neurologist last night. I almost forgot that I had called him at some time during Jack's 48 hour meltdown this past weekend. We have decided to hold tight with any med changes and ride it out, so to speak. Stick to the plan he came up with last week. I told him how we had 48 hours of meltdowns, then two of the best days, even during the EEG. He was quiet for a moment and here, he was looking up Jack's EEG results just to see if that related to the worsening behavior. The EEG showed "Jack has the potential for seizures" basically the same thing it always said. Which is good, it means he didn't have any seizures during the test, not even small ones (that I thought could be happening when he's tuning out or staring off). So some great behavior, no changes in his EEG...we should be good. But we're not.

Jack had a seizure last night and we had to give him diastat (the rescue medication). We waited until the 10 minute mark because it wasn't stopping or showing any signs of slowing up. He came to, looked at us, and went right back to sleep. He had a very, very restless night, lots of little jerks and jumps, thirsty, and over all didn't sleep too well.

I emailed school and called his TSS and made myself a note to call transportation in the morning...so I am finally resting (SLEEPING) well next to Jack who is also resting well and the doorbell rings. I immediately thought of the bus driver. DARN! I answered the door and a man and woman are smiling big smiles and I was soooo confused because I saw the bus in the background...finally after what felt like minutes of staring at them they said they were here to get Jack, his normal bus driver was out sick. I apologized profusely and said this never happens, I always call (read -- I am not one of THOSE people), and I am so sorry, I will call and let you know about tomorrow. They left and I came to blog..still a little fuzzy as I haven't had my coffee yet.

I will keep you posted.