Update Time!

It just seems like the days/weeks are FLYING by!

Jack is doing okay -- no health issues, but his behavior has really taken a turn for the worse the last month or so...there are days when he melts down non stop. We recently increased his risperdal, but if this doesn't work we may try a new medication. It's a really exhausting, trying time right now.

Jack has come so far with his talking! He is now using 3 word sentences most of the time...there are still major gaps in his communication but it's like magic every time he learns a new phrase or puts something together all on his own. He's also learned to self correct his approximations, which has been amazing as well. For example, he used to say "broon" for balloon, now he says "BALLOOM" and I get teary every time he does this, because he's really doing it on his own with about one "corrected approximation" a week. Does my mommy heart really good to hear him talking so well. Tomorrow is his LAST DAY OF PRESCHOOL and he starts FULL DAY KINDERGARTEN on Aug. 25th. I cannot believe it.

Morgan is walking -- make that RUNNING everywhere. She's such a doll -- but has also recently found her voice, especially when she's not happy -- she's really good at signing (just out of habit we taught her more, mom, dad, all done, bye, play, night night, and a few others.) She also babbles non stop -- I tell you, she's gonna be a talker!

I have been reading everyone's blog posts -- I am really going to get back in to the swing of things here, I promise!! Lots of love to everyone!

Group photo on our last day of vacation! from left to right, Jan's daughter Steff,

Jan, Angie, Grandpa Bob, Morgan, Steff's friends Odie, Jason and Jack Riley...

A long break

I am so sorry -- I had no intention on taking such a long break from posting! WOW! I really have so much to write about, I hardly know where to begin. So, for now -- here are the beach pics :)

Vacation Time!

We're off to the beach for a WEEK! WOO HOO!!!!

Project Jason -- Daddy's Den!

Sorry I have been MIA as a blogger... but here's why:

Finally, got the video to work -- sorry, there are no "before" pictures, because I was too embarrassed about the mess we had let our downstairs become! It was what I referred to as the "dumping ground" for things that didn't have a home...

Over the past month I made decisions, keep, sell, donate and TRASH -- then when that was all over I started on the project (the same day Jason left for San Diego). I had my friend Sara help me paint, but other than that I was able to complete the project while the kids were sleeping.

The video only shows two of the 4 rooms I worked on...the laundry room and workshop/storage area were cleaned and organized as well!

The whole point of this project was to give Jason a place to "retire" to when he needs space. I focused on his favorite things, music, reading, drawing...and relaxing! I painted some old pieces of furniture to match (Oregano Green), and the only "major" purchase was the futon (it was really cheap), the floor pillows and baby gates.

He LOVES it and was totally shocked!! The kids love their space as well and before Jack even gets out of bed in the morning he asks to go play "house" lol!

Anyway, here it is, our "new" space!

Swimming Fun!

We had so much FUN this weekend swimming and cooking out with Papa and Jan :) This was Morgan's very first time swimming -- she was unsure at first but by the end she was leading us towards the waterfalls! Jack jumped right in and did NOT want to get out...he's always been my fishie kid!

Can't wait to do it again!

Seizure Tonight

Just when we seem to get on with life and "forget" about those ugly things, they come out of the blue...we just (after a year and a half) put Jack back in his own bed to sleep...

For some reason he wanted to sleep in our bed tonight so I laid down with him until he fell asleep. Jason noticed Jack was awake about a half hour later. I went in and got in bed with him and he was just staring -- not unusual when he's trying to get back to sleep...then it turned eerily familiar (with some new twists too) he started blinking rhythmically with his head slightly moving and kept pointing to my eyes and saying "eye" over and over again with a monotone voice. He didn't flinch when I put my hand near his eyes and then he lost color in his face and started with chewing mouth motions and wiggling tongue motions, rapid heart beat, and then I noticed his left hand was opening and closing...just when I was going to give him diastat (about the 10 minute mark) he "came to" and said "Night night mom" and "yuv you" and went back to sleep.

He's fine now, sleeping away in our bed and Jason just went back to be with him. Of course there will be a call in to his neuro tomorrow (we just had blood levels done Thursday -- which will be a big help in deciding what to do with his meds) and hope there are NO MORE seizures between now and then.

This is the part that I hate -- do I send him to school like a ticking seizure-bomb? Or was this a once and done thing? How do we decide these things? Where's the manual on this stuff?

I will keep you all posted...hope everyone had a great weekend! (ours was AWESOME up until an hour ago...swimming pictures to come!!!)

Send a Card to Alex

First, read my post below...

Then click here to send a card to Alex!

Unimaginable....

I am truly disgusted...

St. Lucie teacher has students vote on whether 5-year-old can stay in class

By Colleen Wixon (Contact)Originally published 01:50 p.m., May 23, 2008Updated 04:30 p.m., May 23, 2008


PORT ST. LUCIE — Melissa Barton said she is considering legal action after her son's kindergarten teacher led his classmates to vote him out of class.

After each classmate was allowed to say what they didn't like about Barton's 5-year-old son, Alex, his Morningside Elementary teacher said they were going to take a vote, Barton said.

By a 14 to 2 margin, the class voted him out of the class.

Barton said her son is in the process of being diagnosed with Asperger's, a type of high-functioning autism. Alex began the testing process in February for an official diagnosis under the suggestion of Morningside Principal Marsha Cully.

Alex has had disciplinary issues because of his disabilities, Barton said. The school and district has met with Barton and her son to create an individual education plan, she said. His teacher, Wendy Portillo, has attended these meetings, she said.

Barton said after the vote, Alex's teacher asked him how he felt.

"He said, 'I feel sad,'" she said.

Alex left the classroom and spent the rest of the day in the nurse's office, she said.

Barton said when she came to pick up her son at the school on Wednesday, he was leaving the nurse's office.

"He was shaken up," she said. Barton said the nurse told her to talk with the child's teacher, who told her what happened.

Alex hasn't been back to school since then, and Barton said he won't be returning. He starts screaming when she brings him with her to drop off his sibling at school.

Thursday night, his mother heard him saying "I'm not special."

Barton said Alex is reliving the incident.

They said he was "disgusting" and "annoying," Barton said.

"He was incredibly upset," Barton said. "The only friend he has ever made in his life was forced to do this."

The child's mother filed a complaint with the school resource officer, who investigated the matter, said Port St. Lucie spokeswoman Michelle Steele said. But the state attorney's office concluded the matter did not meet the criteria for emotional child abuse, so no criminal charges will be filed, Steele said. Port St. Lucie Police is no longer investigating, but is documenting the complaint, she said.

Steele said the teacher confirmed the incident did occur.

St. Lucie School's spokeswoman Janice Karst said the district is investigating the incident, but could not make any further comment.

Vern Melvin, Department of Children and Families circuit administrator, confirmed the agency is investigating an allegation of abuse at Morningside, but said he could not elaborate.

Wheelchair Woes, Part 2

Does anyone know how often insurance will cover a wheelchair? We have private insurance (Highmark) and Medical Assistance (Gateway). Jack received his first wheelchair in December of 2006 (although it was ordered nearly a year before then -- they go by the date delivered). We recently had it adjusted for growth -- and while he fits well now I am not sure how long until his next growth spurt.

Also, he isn't able to use the chair with both arms functionally. Since I knew NOTHING about wheelchairs before his first one, I trusted the seating clinic to know what to order. The chair simply does not work for independent mobility. We are in need of a one arm drive system (where the user can use two hand rims to maneuver on one side of the wheelchair). This will prevent the large circles he is doing now...which of course frustrates him!

This is becoming even more important as he enters Kindergarten. He will use his walker for short distances -- but he fatigues easily and will need his wheelchair even more this coming school year to get around the large elementary school.

His physiatrist would provide us with all letters of medical necessity as well as the prescription and we would use a local DME instead of the seating clinic this time.

There is only one pediatric wheelchair system that offers a one arm drive and luckily it's a brand that insurance companies have been known to cover (because it's less expensive than others, and pretty much a simple, unfancy chair).

I really wish I would have known then what I know now about wheelchairs. There's nothing worse than being stuck with something that doesn't work...

Any tips, advice, words of wisdom for getting insurance to cover the new chair would be appreciated!

I am considering paying out of pocket if we can't get insurance to cover it. Now, I just need to find $3500!!!!! Let me see if the money tree has grown yet, lol! In all seriousness that isn't very expensive when it comes to a wheelchair. Jack's current chair was nearly $8000. Insane, since it DOESN'T WORK for him.

Karate and The Story About Kevin...

Jack is Super -Excited...

So I googled Cerebral Palsy and Karate this morning and came upon this article. It made me wonder if Jack could take Karate lessons. I am trying to find some summer activities for Jack that are less clinical and therapy oriented and more community and fun based! So far I am looking into horseback riding, karate, and a gym/tumble class.

Sometimes I get fed up with hospitals, doctors, nurses and therapies...no offense to any of you -- we LOVE you, but I think this summer we're taking a BREAK and are going to live life just a little more on the outside than the inside of clinical settings. Besides -- Jack will start FULL DAY Kindergarten in the fall. I will be lost without my little man for most of the day...although Morgan and I are sure to find something to do...lol

So that's my plan and I am sticking to it. I emailed a local Karate Studio asking if they could accomodate a disabled child in their class. I truly hope so...if not, we'll find someone who can! I'll keep you posted!

A Few FOUR LETTER WORDS...

I am reposting this from Wheelchair Diffusion

A spam attack on online forums and help centers of the Epilepsy Foundation appear to have been designed to trigger seizures in persons with epilepsy.

“On Easter weekend, the Epilepsy Foundation—and those who use its online forums for help, support, suggestions and camaraderie—came under attack by people who posted rapidly flashing images to cause serious injury and harm. The type of epilepsy that causes people to experience seizures upon seeing flashing or flickering images is photosensitive epilepsy.”


Read the rest at: http://www.epilepsyfoundation.org/aboutus/pressroom/action_against_hackers.cfm

__________________

This makes me sick...and very sad. This takes time and energy -- someone put thought into HARMING people with seizures. Unbelievable. May they get what they deserve...

Morgan!!!!!!!

MORGAN TOOK HER FIRST STEPS!!!!!!!!I can't believe it! She took her steps from Jason to me about 4 steps on her own -- then later about 13 or so steps across the room to me!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! YAY!

"Jack Riley - On the Move" Movie...

Okay, so I tried my hand at creating a movie with Windows Movie Maker. I must admit I've watched it over and over again...(I can't wait to make more -- and play with more of the features!!)

Enjoy!

HAPPY BIRTHDAY MORGAN!

Dear, sweet Morgan, HAPPY FIRST BIRTHDAY to my beautiful little girl. You are such a wonderful part of our family, we love you, Happy Birthday!!!!!

DDS Empowerment Auction

As most of you know, Jack is one of the poster kids for Developmental and Disability Services of Lebanon County this year.

Tonight we will be attending the annual Empowerment Auction! If you're interested in checking out the items up for bid come on out to the Quality Inn in Lebanon. We will be there at 6:00 pm tonight!

A piece of Jack's art work is up for auction -- he's quite the little philanthropist, isn't' he?

LIVE & SILENT AUCTION

Doors Open At 4 p.m. for Preview & Food Sales

Auction Begins at 5 p.m.

QUALITY INN

625 Quentin Rd.

Lebanon, PA 17042

Hope to see you there!

GOOOOOAAAAAAALLLLLLL!!!!!!!!!

Wow, just overnight we've SURPASSED our fundraising goal!!!!!!

A sincere thank you to everyone. We're ready to MARCH FOR BABIES!!!

Almost to our Team Goal!!

We are NEARLY there!! $935 of our $1000 team goal has been met!!!

Let's have a little fun. For everyone who donates online from now until walk day I will send you an "Original Jack Riley" piece of art!! I know you want one! lol...

Here is the link to our TEAM PAGE!

Lots of love to all of you!

The Young@Heart Chorus

"It is possible to age gracefully.
It is possible to grow old without growing boring."

http://www.youngatheartchorus.com

I am inspired and truly hope to one day see them perform! To see more videos go to youtube and type in young@heart chorus...they have many great covers. I love this song by Cold Play...

Possibility Place Videos...

A few short clips from the playground!

Walk Day is Near!!

It's not too late to join our March for Babies team!

Event Information
Sunday 4/27/2008
12:00 PM Met-Ed Building
600 South Fifth Avenue
Lebanon, PA

Our team goal this year is $1000!! We're getting there with a total of $735 so far! I am so grateful and humbled by all of your generous donations. I want to say thank you to everyone who donated, and thank you in advance to those who will!!

Jack, born at 25 weeks spent 3 months in the NICU...