March Photos!

Click on the mini slides to go to the March 2008 Album!

MyGym Special Needs Class

I am really excited to share this with everyone with a special needs kiddo in our area!

MyGym in Mechanicsburg is starting a Special Needs class! Here is what was in the recent newsletter:

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In our non-competitive environment children have fun as they gain strength, balance, coordination, fine and gross motor proficiency, agility, flexibility, and social skills. The most important benefit we offer, however, is the building of confidence and self-esteem through individual accomplishments.

Our structured 45-minute weekly classes will include a warm-up, games, gymnastics, manipulatives, swings, big adventures, and other original activities.

This unique class is offered only to children with special needs. Children with moderate to severe pervasive development disorders and children with moderate to severe verbal and gross motor delays will find this class most beneficial. This class is so great because we focus on the child's abilities, not their disabilities.

Class will be held on Thursday evenings throughout the summer, beginning in June, from 5:30-6:15pm. Pending expressed interested in the class, we may form a class as early as April on Monday evenings, from 6:00-6:45pm. Parent participation in this class is optional.

This class is being offered at a rate of only $52 for 4 weeks! Scholarship money can be applied for. Call us and ask to speak with Susan Bartak for additional details and/or to express interest in the class.

717-737-1936
5103 Carlisle Pike, Mechanicsburg
e-mail: mygympa@aol.com

Visit our website

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I am very interested and will be contacting them to sign up for the class!!!! I hope to see some of our friends there too! Email me if you're interested in attending!

An Award for ME?

Thanks Diane -- totally made my evening!!! Now to those really deserving of this rating...

The Rules: By accepting this Excellent Blog Award, you agree to award it to 10 more people whose blogs you find Excellent Award worthy. You can give it to as many people as you want but please award at least 10. You deserve this! Feel free to recognize blogs that have already received this award:

Jenelle's Journey

Chewing the Fat

Looky Daddy

Micro Preemie Twins

Whitterer on Autism

Mel's Thoughts

The "Hull" Munchkins

Terrible Palsy

Bird on the Street

Mama's Diaries

Happy Easter!

HAPPY EASTER!!

Love,

Jack Riley

Monday in Pictures...

Jack's a good kisser!

The "I'm FIVE" smile...lol

Morgan's First Ponytail!

FUN in a shoebox!

American Idol -- Top 12...Season 7

So I am glued to my tv once again! It's IDOL time!! I love this part of the competition...down to "serious" singing and performances...the big stage...the nerves, the great songs, and the heartbreak of being sent home!

I applaud all of these kids (and yes, I can say that seeing as I am not of eligible contestant age, lol). I think this year we have outstanding performers! Okay and the Lennon/McCartney songs were absolutely perfect for THIS top 12!

Here is where I stand on this year's top 12...

Amanda Overmyer
The "rocker" chick...I really haven't connected with Amanda. I think she lacks something (the girl won't smile for anything!) and half the time I think she's out of tune...but the judges love her and America must too because I've thought she was going home week after week!

Brook White
She's really, really grown on me. I like what she's done with her song choices and think she could have a career beyond idol. I am not ready for her to go home yet!

Carly Smithson
I think Carly can really sing...last night's performance was my favorite of hers. I don't love her, but do admit she's really talented! I don't think it's her time to go yet!

Chikezie
I absolutely LOVED Chikezie last night. He's really taking what Randy, Paula and Simon say and MAKING it WORK! Surprisingly, I am a sucker for bluegrass (ala "O Brother Where Art Thou" or "Cold Mountain") and really got excited when he started with the small band on the stage...I hope he stays and continues to totally break the mold!

David Archuleta
Poor David. He was really nervous last night and I was surprised! We can't be perfect all the time...and last night it was David's turn to be "unperfect." To me he has the voice of an angel and I can see him performing contemporary music like Josh Groban. I don't want to see David go yet either!

David Cook
Another "rocker" -- I am not the biggest fan of David Cook's, but would like to see him stick around because I do think he's a better performer than some of the others!

David Hernandez
Okay, DID NOT LIKE IT! I agree with Simon...over performed, a little cheesy, and not at all what I would expect at this stage in the competition! I am afraid, although he can sing, his performance on stage will not stand up to some of the others. He's my pick to go home this week...Sorry David!

Jason Castro
I love this guy! He seems soooo sweet and down to earth. I admit though, this is more my style of music so I may be a bit biased. I don't think he has the most amazing voice -- but I want to see more from him. His version of Hallelujah last week gave me chills! That is one of my all time favorite songs...and I was so glad when the judges "got" the performance.

Kristy Lee Cook
No....no, no, no. It didn't work last night. I think she's trying too hard to become a country singer...either you are or you aren't and I really am not buying the country gal performance. She's ready to go home in my (very humble) opinion!

Michael Johns
He's been stellar since day one! Again, this is really up my ally -- and I think he could have a career today even without idol! I hope he stays!!

Ramiele Malubay
She's a beautiful girl with a great voice, but she's another one I am having a hard time connecting with. I don't think she should go home, but if I need to get up at all during idol, it's usually during her songs!

Syesha Mercado
She's a cute, spunky thing but I am not sure she's got what it takes when you compare her to other contestants this year. I think she'd be great on stage (maybe in a musical -- where she could act and sing) but I don't see her winning this thing.

So far so good...

Jack had a good weekend -- no seizures on Sunday or Monday (that we saw). We are still on edge -- but it's always that way for a week or so following seizure events.

Jack's neurologist increased his Valproic Acid to try and get his levels up a little higher....he hasn't raised his Tegretol because starting late March we were going to try to wean him from it so that he's only on one seizure med. We are NOT going through with that plan and will discuss all medication levels and options at our next appointment in April.

We had a wonderful birthday dinner and birthday party for Jack this weekend. He wasn't 100% himself, but I think he enjoyed himself!

We have a VERY SPECIAL GUEST from Sesame Street visit our house!!

Check out the pics...

Jack was more interested in the Balloons and Morgan LOVED our special guest...

Thanks for thinking of us. I hope you all have a good week.

Seizure...

Jack was sleeping in my bed taking a nap and I just happened to go in and check on him (mommy instincts maybe?) and I found him with his eyes open and jerked to the right, not blinking and dusky, teeth grinding and chewing/tasting movements with his mouth. Since I had NO IDEA how long he'd been having the seizure I went for the diastat and when I returned he was coming out of it. He didn't really acknowledge me, but I've seen him like this after seizures before. He fell back to sleep and is cuddled on the couch not out of my sight.

I called neuro and am waiting on a call back. He has no signs of illness (yet) so we'll see what the weekend brings...and to top it off his bday party is this weekend. I hope it stays at just one and that he's not getting sick...

Siezures STINK...BIG TIME.

HAPPY BIRTHDAY JACK RILEY!

Jack is 5 years old today!

Happy birthday to my dear, sweet, boy. I love you so much!

Growing up...

Jack is really growing up. I can't believe he will be FIVE years old tomorrow. What an amazing journey. I have been blogging for FIVE years...that is quite a lot! I would love to hear from you in a comment. I would love to know who's out there! In honor of FIVE years...please reply to this thread!

Oh, and the whole growing up thing. Perhaps it's because he knows he's going to be five....but for whatever reason, just last week he decided to no longer call me "Ma Ma" I am now "Mom." In perfect form, clear as a bell, "Mom." Also, I stopped in to observe his PT session at school this afternoon and instead of being happy to see me, he walked over to me with his walker pushed on my leg to stop me from coming in and said "BYE!!!" He didn't want me at school! He didn't want to go home with me...he wanted me outta there!! And yes, that makes me happy (and okay, a little sad too) but it really says a lot about his independence and confidence and how moms can totally cramp your style...lol

PS -- sorry about the vent yesterday. It will get fixed, some how, some way. We are starting with the seating clinic at CHOP and are going to test out power chairs, one arm drive manual chairs and perhaps anything else that we can. Mel, I am still working on that email back to you. Thanks everyone for your thoughts!!

Wheelchair Woes...

THUMP.

THUMP.....

THUMP!

That was me banging my head against the table. Seriously, I am so FRUSTRATED.

It turns out that insurance will not cover the e-fix add on for Jack's chair. The sticker price? Over $8000.00 -- that is MORE than what a new wheelchair, even a power chair would cost. Since insurance will only cover a new wheelchair every 5 or so years....we're basically stuck with a wheelchair that Jack cannot use.

So back to the drawing board and back to square one. I am trying to look into customizing a manual one arm drive for the chair (Kuschall does not have one commercially available). I don't know how far I will get with this idea.

I had Jack at the eye doctor this morning and he wheeled the best he could (in large circles, and backing up) all the way into the toy room! Imagine what he could do with the proper wheels. I HATE this...wheelchairs are supposed to provide independence -- and here's a little boy who wants nothing more than to be independent but has everything stacked against him. His little legs don't work how he wants them to...his one arm doesn't work at all...and now we're limiting him further by making him use a chair that's impossible to use! Can you feel my mommy heart breaking?

So what to do...what to do...I would like to fix his current chair if we can. It's perfect in how it fits him...it's light weight, and stylish....we may end up getting a new chair all together, but do we go for another manual chair? A power chair? How on earth do people pay for this stuff? If we get a power chair will I be able to lift it in and out of our car?

I think, like I said first I want to try to fix what he has....then if we can't, I will start over again.

THUMP.

THUMP.....

THUMP!

Just WHAT are my kids LISTENING to???

And I thought I'd have to worry about MTV...nope, a cd of 100 silly songs had me raising an eyebrow and quickly changing to the next song...

What on earth??? lol!


Found a Peanut

Tune: Clementine
Written By: Unknown
Copyright Unknown


Found a peanut, found a peanut,
Found a peanut just now,
Just now I found a peanut,
Found a peanut just now.

Cracked it open, cracked it open,
Cracked it open just now,
Just now I cracked it open,
Cracked it open just now.

It was rotten, it was rotten,
It was rotten just now,
Just now it was rotten,
It was rotten just now.

Ate it anyway, ate it anyway,
Ate it anyway just now,
Just now I ate it anyway,
Ate it anyway just now.

Got a stomach ache, got a stomach ache,
Got a stomach ache just now,
Just now I got a stomach ache,
Got a stomach ache just now.

Called the doctor, called the doctor,
Called the doctor just now,
Just now I called the doctor,
Called the doctor just now.

Penicillin, Penicillin,
Penicillin just now,
Just now I took Penicillin,
Penicillin just now.

Operation, operation,
Operation just now,
Just now an operation,
An operation just now.

Died anyway, died anyway,
Died anyway just now,
Just now I died anyway,
Died anyway just now.

Went to heaven, went to heaven,
Went to heaven just now,
Just now I went to heaven,
Went to heaven just now.

Wouldn't take me, wouldn't take me,
Wouldn't take me just now,
Just now Heaven wouldn't take me,
Wouldn't take me just now.

Went the other way, went the other way,
Went the other way just now,
Just now I went the other way,
Went the other way just now.

Didn't want me, didn't want me,
Didn't want me just now,
Just now they didn't want me,
Didn't want me just now.

Was a dream, was a dream,
Was a dream just now,
Just now it was a dream,
Was a dream, just now.

Then I woke up, then I woke up,
Then I woke up just now,
Just now I woke up,
I woke up just now.

Found a peanut, found a peanut,
Found a peanut just now,
Just now I found a peanut,
Found a peanut just now.

Team Myles...

Meet Myles -- and grab a tissue! I am in awe...he reminds me very much of our Jack Riley!

A Really Looooooong Week!!!

We have major meetings/appointments all week.

Last night we had Kindergarten registration -- a ton of paperwork to enjoy...

The entire meeting last night was held for the parents of all kindergarten aged kids. It really left me extremely sad at the end, knowing none of it really pertained to Jack. They talked about kindergarten readiness and how exciting a time it is, and how we'd get to practice a bus ride with the kids....all of it was like going on a really great job interview and at employee orientation getting told you weren't hired...but you still had to sit and listen to what everyone else was going to be doing and enjoying. Now I know Jack is delayed, but to see the smiles on all of the parents faces when they talked about learning to read, and all of the other kindergarten milestones, my heart broke. Jack is not anywhere near what the other kids are...and it really, really hit me last night.

Today is the IEP meeting at Jack's current school. I am prepared with tons of notes (thanks to some brainstorming with friends) and my laptop with video of Jack doing his cards (labeling, receptive, and spontaneous speech).

Wed is neuro, thurs is an intake for wraparound services (autism support) and friday Morgan has her RSV shots...

Someone come and check on me please....make sure I am still standing at the end of all of this! lol
Also, please wish me luck today!!


PS -- don't ya just wanna cuddle with these two????

up...Up....UP!!!!!

Two kids -- two different milestones...one happy ma ma (although with a few gray haris)!

I find Morgan doing this.....EVERYWHERE! GOOD JOB MORGAN!!!



Now here's Jack -- what a major feat!!!!!!! WAY TO GO JACK!

Getting it out...a new diagnosis, full disclosure

I wrote the following to my specialparent.org friends on December 10th, 2007 upon returning from the neuropsychological evaluation at the hospital. I have learned more since then and even have different thoughts/feeings now but I wanted to let you know how I was feeling in the moment.

_________________

December 10th, 2007

We just returned from the neuro-psych eval and I am a little overwhelmed.

Jack didn't cooperate for much of the testing but did well with certain activities. The primary way of getting information was through parental interview. The Dr. was fabulous. I immediately knew she was listening and completely and totally validated my concerns and LISTENED. We were with her for about two hours and then we took a break while she calculated the test results. She did the WPPSI - 3 and the EIDP language tests. She also went through a lot of "check lists" about behavior (not cognitive based)...

Her findings were PDD-NOS -- on the autism spectrum. When we went through the checklist item by item after she mentioned PDD it clicked. It's like the list should have been called "Jack's List" instead of the Checklist for Autism in Young Children.

I can't possibly type the whole list, but I will briefly type which ones Jack displays...

Problems with Social Interaction:
Socially indiscriminate behavior (touching people, looking for tattoos on everyone -- even if he doesn't know them well, playing with classmates belts, hair and getting right up into strangers' faces).

Perservation:
Narrow or unusual range of interests and play behaviors, obsessive preoccupations, attachment to and holding particular objects (he always has a brush in his hand, could play endlessly with the string to our vertical blinds), among other things.

Stereotyped and repetitive play (opening and closing, etc) -- he opens and closes things over and over, has a lot of other things he could do over and over again.

Upset with change/transitions (absolutely)

Somatosensory Disturbance:
Unresponsive at times to verbal input (just stares off, not seizure related, even when I KNOW he KNOWS what I said.)

Hypersensitivity to some sounds (vacuum, lawnmower, etc.)

Distress with crowds and commotion (tunes out and doesn't look/act like himself)

Fascination with visual stimuli (he likes fans, lights, etc.)

High tolerance for pain (probably a preemie thing) but he can fall and not shed a tear.

Sleep disturbance (finally better, but only recently)

Feeding disorder (again, cp/preemie thing)

Atypical Developmental Pattern:
Expressive language disorder -- limited speech, limited reciprocal conversational speech (he expresses his needs but doesn't hold a conversation, he is unable to answer yes or no questions, only uses no as a refusal.)

Atypical vocalizations (screeches with delight, etc.)

Splinter skills -- (he's advanced with his rote memory, very mechanically inclined but delayed severely in other areas.)


Mood Disturbance:
Tantrums, aggression, self-injurious behavior, upset by performance demands (no explaining needed)

Mood changes suddenly

Difficulty expressing emotions

Problems with Attention and Safety:
Selective attention, situational over-activity (hyper-focused on things interesting to him -- totally tunes out and is inattentive other times)

Limited safety awareness

Like I said, this is just a small description of the items checked off -- but enough to know it truly affects all areas of development.

She explained how she has a niece very similar to Jack (2 lbs at birth, bilateral brain bleeds, cp, triplegia, delayed developmentally) and how even though they are very similar in their cognitive and physical skill set, she does not have the behavior symptoms Jack has. I was very confused at first how these symptoms were different than neurological damage or developmental delays. When she explained how you can be delayed and still not have the behavioral issues Jack is having.

We talked about Jack's developmental delays and she gave me Jack's IQ score. He falls in the Mild Mental Retardation category with an IQ of 60. She said in the early years of school he should do well because of his rote memory skills -- but in later grades when teaching and learning relies more on conceptual information he may have trouble. I am not surprised, but I never really ever wanted anyone to tell me this. He has strengths and I know that -- he has areas in which he is very delayed and I know that as well. This is the ugliest and hardest label to come to terms with. I don't know why, it just is.

She is going to help us set up ABA therapy for (hopefully) 20 hours a week at school and the remainder at home. I know very little about this, but from what she told me it sounds like a really, really good situation for Jack.

I am sure I am leaving out a ton of information but I had to get some of this out before I forgot. I am not posting on Jack's blog or really saying anything to family until I can digest this information myself. I told Jason but we didn't get to talk long because he had to work today. I didn't say anything to my mom (she was watching Morgan) -- I just told her we did a lot of tests and we'd have the report in a few days. I know it will be hard on our parents to hear this information. Hell, it's hard on me and I can't be strong for anyone else right now.

Thanks for reading -- if I didn't have you guys I would seriously not know what to do. You've been here through everything -- the NICU, the CP diagnosis, the emergencies, but also the best times -- Jack's first word, his first steps with his walker...I am the mommy I am today because of my friends here. I will never, ever forget that.

Thanks again for everything...love you guys!

_________________

So why now? I feel like if I don't share this part of our world I am not being honest. I also feel ready to answer questions and talk about it -- more so than around the holidays. I am also going through a tough time setting up wraparound services (TSS support, ABA therapy, etc.) and getting everything I feel he will need in order to present at his IEP meeting next week. There are decisions about elementary school that are so BIG I am not even sure how to wrap my mind around it...

There are tough decisions to make and I need YOU as my ever trustworthy sounding board! So there...that's the past few months in just one post.

Happy Valentine's Day!

Today is also our 7th wedding anniversary...

Wow, so what's up with everyone? I feel so very out of the blogging loop. I am trying to catch up! I am excited to announce the arrival of little Tori -- check out Doni's Blog! Congratulations guys!!!

Jack and Morgan were on the mend -- but I believe Morgan is starting with another cold. Between illness and bad weather Jack went to school once in almost 3 weeks! His IEP meeting had to be rescheduled (due to weather) and they are working on another date and time.

Morgan is REALLY growing and changing! She's finger feeding small bits of puffed rice cereal and is pulling to STAND on everything! She's babbling all the time and is such a joy...she's my precious girl. Jack has taken it upon himself to tell Morgan "NO" when she's trying to turn knobs on the electronics or putting her mouth on the edge of the carpet. He looks at her and sternly says "Mi Mi NO....no, no, nooooo!" Jack is really growing up too. He's really patient with Morgan (or as he calls her Mi Mi) and lets her have turns with his toys.

I wanted to show you the keyboard I got for Jack -- it was 19 bucks at Staples and is made by Crayola.

He plays keyboard-o-rama on Sesame Street's website and we've been working on our letters. I like the keyboard a lot the keys are easy to push and the letters easy to read.

I hope you're all having a good week!!!

Locks of Love

It was for a good cause...

My 11 inch ponytail went to Locks of Love!

It feels so strange! I love it!

BEFORE:

AFTER:

Much better...

I took Jack to the pediatrician yesterday and it turns out he has pneumonia. Yesterday he spent most of the day on the sofa sleeping and resting...not eating or drinking much at all. I know the diastat was partially to blame, but I knew he was feeling lousy from the fever and cough too.

This morning Jack woke up and asked to eat right away. He requested waffles (plain, never butter, never syrup) and ate THREE of them! He had water to drink and is playing now which is so nice to see.

He's on an antibiotic for pneumonia and motrin for the fever. I canceled school and therapy for the rest of the week and the only other obligation I have is a quick informational meeting this afternoon about transitioning to Kindergarten.

I will keep you posted on how he's doing! Thank you all so very much for your comments. I am only sorry to know that there are others going through the seizure stuff as well. I am glad to know I have so many caring friends and family. Thank you from the bottom of my heart. (((hugs)))

Seizure and 911...

Jack had a slight fever yesterday so I kept him home from school. He spent the day on the couch soaking in cartoons and not really eating or drinking much at all. I knew he was coming down with something but overall just seemed tired. He perked up when daddy came home and got off the sofa for the first time in several hours and played with Morgan while Jason and I watched the news. Jack stood up at the table in our living room with Morgan under his feet and suddenly tensed up and flew backwards a lot like a solid brick of ice -- and landed on the back of his head on the hardwood floor. For a brief second I thought he had just lost his balance, until I realized he was still rigid and turning grey. I pulled him away from the table by his foot and Jason grabbed the diastat and called 911. He wasn't breathing because he was locked in a tonic phase and really turning grey/blue. I administered 5 mg of diastat and his body released from the clenched, rigid tone to loose and floppy and he began breathing very shallow breaths. The paramedics, fire department and police got here within moments and he was coming out of the seizure but was still unresponsive. They took his stats and medical info and loaded him onto a board with a neck brace and secured him so he couldn't move as a precaution for the nasty fall he had. Jason stayed with Morgan and I rode in the ambulance. During the ride to the medical center Jack was coming to and was agitated because he was strapped down. Once we got to the hospital he was responsive and asking for a drink. Jason had called my family to come watch Morgan and he arrived at the hospital shortly after we did. The ER was quiet so we got attention pretty quickly. They took blood to test for medication levels and started an iv for fluids. They took him for a head and neck CT scan and we waited for the results. His blood levels came back low and his CT scan came back clear. We were released after several hours of observation with instructions to increase his valproic acid and follow up by phone with peds and neurology today. Jack went to bed shortly after we came home. Morgan, on the other hand, was thrilled to be spending time with Grandma, daddy and mommy and wondered why we don’t have late night “parties” like this more often. So far this morning Jack is tired and coughing and again, slightly feverish. I will be setting up an appointment with his pediatrician in the next day to make sure he’s getting better and not in need of antibiotics.

There was no warning with this seizure…no twitches, no vomiting or lip smacking…nothing. It came on so quickly and suddenly. I keep replaying the scene over and over and can’t get the sound of his precious little head hitting the floor out of my mind. I have made the executive decision to get carpeting in our living room and hallway. In fact, while I’m making executive decisions, any way we can simply carpet and pad the rest of the world too?

I will keep you all posted. Keep our little man in your thoughts and prayers and send plenty of “NO MORE SEIZURES” vibes our way.