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.

I've Been a Bad Blogger!

And for that I apologize! I am not even sure where to begin!

I have been taking Jack to outpatient therapy (PT and OT) several times a week in the mornings before school. He is working so hard without a fuss and it makes me so proud. The Botox injections really worked well for Jack this time around. He is able to be stretched more easily and it's carrying over into walking, standing and even sitting better. Every chance I get I've been taking Jack with me on errands/appointments and using his walker. It's not always easy -- but the boy is so motivated! We get lots of onlookers stopping in their tracks and most people are supportive and patient even giving Jack a few words of encouragement along the way. He's come so far with listening to my directions and not wandering off on his own or trying to crash into store displays (YIKES)...usually I go a bit in front of him and let him explore but try to keep him reigned in and on task. I am so proud -- my heart swells each time I see the look on his face as he's walking! I can't wait for warm weather so we can REALLY get out and explore the world!!

Miss Morgan is crawling -- quite fast, and with the intent on touching and eating everything she's not supposed to! It's amazing to see her grow and develop into this little person. She's babbling a lot as well -- she babbles dada, nanana, and lots of coos and goos, giggles and squeals! She and Jack are funny together. She is interested in EVERYTHING he's doing. She eyes up his food, the way he crawls, she dances when he dances to music, laughs when he laughs and wants every toy he's playing with. Jack goes with the flow and is a very nice, loving big brother. He is so gentle with his sissy and loves to touch her soft hair and give her hugs and kisses! See the video for a great example of the fun at our house lately!

We are preparing for Jack's annual IEP -- which is always nerve-wracking and stressful. This year we have a lot of meetings and preparations because we are going through the process of transitioning him from a special education preschool setting to KINDERGARTEN!!!!!!!!!!!!!!! Can you believe he's going to be 5 in a few weeks?!?!?! FIVE. I am without the words to express how that makes me feel! We will be attending meetings to figure out what kind of program would best suit Jack's needs. I know we have several options. I will let you know as we learn more.

New pics are in the January 2008 album and here is a video of the kids I took last night...enjoy and have a great weekend!!!

Go, Go, Go Morgan!

Morgan wanted her own post about being on the GO! She's getting ready, don't you think?

How Jack is Moving Post Botox...

Besides the fact that he's cute ; ) -- I wanted to show the video of Jack post botox at one week. He's having an easier time getting to standing. His left foot seems to be turning in a lot more than usual. Perhaps releasing some of the high tone is causing this. I don't know but will be mentioning it to the physiatrist in two weeks. His right arm is totally straight -- which is nice.

This morning we went for a walk with his walker outside (we're having a "heat wave" in January!!) and he did well -- he had enough high tone left to hold on with his right hand (previously after botox his right hand became too weak to hold his walker) and he walked well with the nagging exception of the left foot turning in.

Here he is moving and crawling inside this morning:

Botox Follow Up Today

The follow up went well this morning. She didn't feel the need to serial cast Jack!! She said he's close to neutral in his feet and we still have lots of time for the botox to work as well. Of course his hamstrings are always a concern but I really don't think any amount of botox or casting would be a "cure" or "answer" anyway. I feel sometime in the future surgery will be mentioned.

We notice a nice improvement in his range of motion and his legs are hardly crossing at all when he's walking with his walker. His hand is nice and open too and he's wearing his hand splint with no problem (fingers crossed it stays this way).

I know the results are temporary, but our hope is to increase his range of motion even slightly to help prevent bone and muscle growth problems called contractures. He has several contractures already and what they call a fixed contracture in his right hand. He's so young and has so much growing to do -- I worry what all of the spasticity will do to his body. I also wonder when is enough enough as far as intervention. So far we've done the "minimally invasive" things -- but okay, it may be medically minimally invasive but what about all of the appointments and hours of therapy...I just hope we choose the right course for Jack.

So overall our botox experience with the med center's new physiatrist went very well, with only minor bumps along the way...

The doctor is also excited to learn more about the e-fix power conversion for Jack's chair. She's on board with letting writing and insurance battling to get Jack what he needs for independent wheeling! The NEW vendor (don't even get me started on the OLD vendor) called and is getting preauthorization. We will meet with him to discuss the system in detail soon.

I am still adjusting to Jason being back at work! These two really give me a run for my money!! Busy is always an understatement at our house! More to come :)

The E-Fix Power Conversion

My frustrations have grown greatly over the fact that Jack is not able to use his wheelchair independently -- the sole purpose for having wheels is FREEDOM! I have had it up to my eyeballs with our current vendor. I've been trying to get a system that will propel Jack's chair when he pushes only on the right side. Come to find out it doesn't exist for his brand of chair. I was discouraged and started looking online. Months of waiting and calling totally WAISTED!! I found something called the E-FIX (on the site click on E-FIX) and let me say I WANT THIS FOR JACK so very much!!!! Check it out!! It easily converts your existing manual wheelchair into a powerchair!



1. A simple bracket connected to the power distribution unit is installed on the wheelchair frame.

2. The manual wheels are removed and the E.fix wheels are "plugged in". (Existing manual wheels may be interchangeable with the E.fix drive wheels.)

With a turn of the wheel hub, users can choose between manual and power operation.



3. The joystick controller is mounted to the wheelchair frame.This component is quick release for easy removal.



4. The nylon battery pack is attached using Velcro straps. The power distribution unit plugs into the face of the battery pack as it sits in the pouch. To fold the wheelchair, only the battery pack needs to be removed.

Here's a google image of the system attached to a manual chair...



There are so many reasons why this seems like it's ideal for us. It's utilizing his existing chair -- we love his chair and the portability factor (we don't need a lift) -- he fits well in the seat and you can switch between power and manual modes.

I contacted a new vendor and he's going to work with us to try and get this system for Jack!

Here is the printable brochure (PDF)...

I am hopeful that this will truly let Jack be independent!!

Mornings Like This...

And sometimes I wonder how I don't get anything done?!?

Update!

Wow, I can't believe it's 2008! HAPPY NEW YEAR! Our Christmas was fantastic -- and I've uploaded a lot of new pictures to the December 2007 Album!

Jack had botox injections on December 31st and the procedure went very well. He was so brave! He cooperated and was excited to wear the jammies (hospital gown) and get into bed. He was put under general anesthesia and was given injections in his both legs in the hamstrings, gastrocks, upper arm, forearm, and thumb on the right side. Right before they gave him the mask to go to sleep he asked me to sing "The Wheels on the Bus" and the Dr. and anesthesiologist chimed in too! I learned both have kids under two years old -- so they were pros at all the verses! He woke up and started bouncing around -- and after he took some juice and rested a while we were free to go home. We will be heading to PT and OT several times a week for the next few weeks to maximize the benefit of looser muscles and help Jack gain strength that will hopefully carry over after the botox wears off.

Jason had off from work from December 21st until Jan 2nd! It was so nice to have daddy home for so many days in a row! We had so much fun on "vacation" and I was sad when he had to go back to work! We enjoyed the downtime and played with the kids, went shopping, and basically just stuck around the house and took it easy. We did go to Chocolate World in Hershey and the kids had a great time! They were fanstastic and gave us the "Royal Treatment" when it came to disabled access. We didn't have to wait in line and they had a special wheelchair ramp to get on to the tour ride!

I really hope your holidays were happy and safe! I promise not to be such a stranger to the blogging world now that things have settled down! To my blogging buddies -- I've been reading and catching up...now I'll just have to come out of "lurking" and tell you all how much I've missed you!!

Merry Christmas 2007!

Merry Christmas Everyone!

Twas the night before Christmas, when all through the house
Not a creature was stirring, not even a mouse.
The stockings were hung by the chimney with care,
In hopes that St Nicholas soon would be there.

The children were nestled all snug in their beds,
While visions of sugar-plums danced in their heads.
And mamma in her ‘kerchief, and I in my cap,
Had just settled our brains for a long winter’s nap.

When out on the lawn there arose such a clatter,
I sprang from the bed to see what was the matter.
Away to the window I flew like a flash,
Tore open the shutters and threw up the sash.

The moon on the breast of the new-fallen snow
Gave the lustre of mid-day to objects below.
When, what to my wondering eyes should appear,
But a miniature sleigh, and eight tinny reindeer.

With a little old driver, so lively and quick,
I knew in a moment it must be St Nick.
More rapid than eagles his coursers they came,
And he whistled, and shouted, and called them by name!

"Now Dasher! now, Dancer! now, Prancer and Vixen!
On, Comet! On, Cupid! on, on Donner and Blitzen!
To the top of the porch! to the top of the wall!
Now dash away! Dash away! Dash away all!"

As dry leaves that before the wild hurricane fly,
When they meet with an obstacle, mount to the sky.
So up to the house-top the coursers they flew,
With the sleigh full of Toys, and St Nicholas too.

And then, in a twinkling, I heard on the roof
The prancing and pawing of each little hoof.
As I drew in my head, and was turning around,
Down the chimney St Nicholas came with a bound.

He was dressed all in fur, from his head to his foot,
And his clothes were all tarnished with ashes and soot.
A bundle of Toys he had flung on his back,
And he looked like a peddler, just opening his pack.

His eyes-how they twinkled! his dimples how merry!
His cheeks were like roses, his nose like a cherry!
His droll little mouth was drawn up like a bow,
And the beard of his chin was as white as the snow.

The stump of a pipe he held tight in his teeth,
And the smoke it encircled his head like a wreath.
He had a broad face and a little round belly,
That shook when he laughed, like a bowlful of jelly!

He was chubby and plump, a right jolly old elf,
And I laughed when I saw him, in spite of myself!
A wink of his eye and a twist of his head,
Soon gave me to know I had nothing to dread.

He spoke not a word, but went straight to his work,
And filled all the stockings, then turned with a jerk.
And laying his finger aside of his nose,
And giving a nod, up the chimney he rose!

He sprang to his sleigh, to his team gave a whistle,
And away they all flew like the down of a thistle.
But I heard him exclaim, ‘ere he drove out of sight,
"Happy Christmas to all, and to all a good-night!"

Botox Postponed...

BOTOX WAS POSTPONED until Dec 31st....it's a long story. Insurance would NOT pay for botox without sedation....but guess what....they'll pay for it WITH sedation??!? Which is at least if not more than 3 times the cost. I could have paid a few thousand out of pocket but it just wasn't in the budget. They were supposed to have had the preauthorization completed beforehand but it came down to the 11th hour and we spent all day at the hospital waiting in a small room. I think I may go insane if I have to do that again!

After waiting at the rehab clinic we spent the rest of the day waiting at the eye clinic. The eye exam went well -- he wants us to not use Jack's glasses for 2 months to strengthen his eye muscles by making them work harder.

So we're scheduled for botox with sedation on Dec. 31st...

Botox Today!

We are getting Botox for Jack this afternoon -- we used to travel to CHOP but we've started seeing the pediatric physiatrist at the Med Center and decided to have it done there.

Jack will not be sedated for the procedure. I am nervous. At CHOP they used numbing cream and sedation -- here they only use the EMLA numbing cream. I don't like sedation, but I also know they sedate for a reason (pain and memory). I even had a dream about Jack's old neurologist lecturing me and damning me for not listening to him. UGH. Although last time Jack was sedated for Botox he had that horrible apnea episode that dropped his sats waaaay down and he turned gray/blue and aspirated which several weeks later caused pneumonia and a seizure that lasted for hours/911/ER stay....so I am all for trying it without sedation at this point. Double UGH.

Then of course afterwards he has an eye appointment. This is going to be one long day!

Please wish Jack luck!

The Out-Takes...

Bloopers, out-takes, boo-boos, bungles...whatever you call them they sure are funny! This weekend we attempted to take the kids' pictures in front of the tree for our Christmas Cards. We ended up getting a decent shot but I wanted to share the not so Christmas-cardy stuff! LOL

Deck the Mall!

Jack was chosen along with two other kids to represent Developmental and Disability Services in our county. We've attended several events and I wanted to share some pictures with you!

We did "Deck the Mall" and I gave an interview to a local radio station...and wrote our story for the newsletter.

We're very proud to represent DDS.

Our radio interview



Here's Jack attempting to take money OUT of the donation can! LMAO