Wednesday, January 30, 2008
Much better...
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)))
Tuesday, January 29, 2008
Seizure and 911...
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.
Friday, January 25, 2008
I've Been a Bad Blogger!
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!!!
Wednesday, January 09, 2008
Go, Go, Go Morgan!
Tuesday, January 08, 2008
How Jack is Moving Post Botox...
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:
Monday, January 07, 2008
Botox Follow Up Today
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 :)
Friday, January 04, 2008
The E-Fix Power Conversion

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...
Thursday, January 03, 2008
Update!
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!
Monday, December 24, 2007
Merry Christmas 2007!

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!"
Monday, December 17, 2007
Botox Postponed...
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!
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!
Friday, December 14, 2007
The Out-Takes...
Monday, December 10, 2007
Deck the Mall!

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
Thursday, December 06, 2007
It's been a rough few weeks...
Nov 28th
We had our follow up appointment with our neurologist this afternoon. It was our last visit -- he's retiring and I am really sad to see him go. He's helped us so much through this past year with all of the seizures Jack's had. We will see a new doctor at the same office.
Jack has been seizure free since we started him on valproic acid along with tegretol (what he had been taking). His mood was great for a few weeks then the past 2-3 weeks have been really, really difficult. His obsessions have spiraled out of control (all doors must be closed, all lights on, the fan in my bedroom even though the door is closed must be on, his shoes have to be away if we're not going anywhere, if one sleeve is up the other one must be too and so on, so on). Jack has always had "quirks" but they didn't interfere with daily life. It seems like he suddenly has tunnel vision and has a complete meltdown if I tell him no, or wait, or if he knows the shower door is open...add a severe language delay into the mix and it's been, to say the least, a very trying time over here. He gets mad and hits himself, and even started pushing chairs over at the kitchen table if I tell him he can't have another (fill in food item here).
Normally he's so sweet and I have no idea what's CAUSING the behavior...I hate treating something that I don't know the root cause of, you know??
I even took him to the ped to make sure it wasn't his ears, neurosurgery doesn't think it's his shunt, and I am kind of at my wit's end.
Our neuro plan is to increase the vaproic acid slightly over the next two weeks to see if that helps his mood (it's an anti seizure med but is also a mood stabilizer). We have plenty of room to go up with the valproic acid and over the next year he feels we should be able to wean the tegretol out totally and rely on the valproic acid alone for seizure control.
If the valproic acid works in the mood department then we're good to go. If it doesn't he have us an RX for resperdal. Candi, I know you guys use this with Noah. Please, tell me EVERYTHING you know about it.
I am hoping for some normalcy for Jack soon. He's not his happy self. I hate to see him so wired and moody.
Thanks for listening...I'll update on how the increase is going...
Edited to add luckily we do see a neuro-psych Dec. 10th so I hope to get some insight on his OCD-like behaviors and what we can do to help talk him out of the rages and meltdowns.
sigh...
Nov 30th
Due to Jack's recent changes in behavior -- I really wanted him to have a CT scan/neurosurgery visit to rule out anything with his shunt. We are scheduled for a scan in the morning on wed. and an appointment with neurosurgery immediately following. If things get worse until then we were told to head into the ER.
I almost can't take it anymore. This morning he was in a heap on the hardwood floor banging his head over and over. He's been impossible. I hate seeing him this way.
I called his neuro too this morning to see if we can start the rispridal immediately vs. waiting to see how the increase in seizure meds helps as a mood stabilizer.
I don't know if I will have any hair left -- it's been that bad. I am going to call a few pharmacies to find someone who carries the and as soon as I get the okay from neuro I am taking both kids out to the pharmacy.
Thanks so much for listening.
Dec 6th
Wow, yesterday was a tough one! Jack did so well during the CT scan. Normally we have him sedated -- but they didn't have enough time on the schedule to do it under sedation so I said we could try without. He cried a little, but stayed very still. I sang to him (and everyone else in the room, lol) and he did calm down.
We had a lot of time to kill after the scan until we saw the neurosurgeon so we walked around the hospital halls and stopped at Starbucks for a latte and an applejuice (latte for me, juice for Jack, hee hee).
We signed in at the neurosurgeon's office and waited, and waited, and WAITED...Jack was having a full blown meltdown and I wanted to cry too. We were finally seen and the scan revealed a minute change in the size of Jack's ventricles. They were not convinced the outrageous behavior had anything to do with his shunt -- but were more convinced it was his seizure meds. They did a conference call with Jack's neurologist and he stated he didn't want any of the meds changed (I totally agree -- we finally have total seizure control). So we left without any real answers and we'll go for another CT scan in a few weeks to keep an eye on those ventricles.
The respridal has helped A LOT -- he hasn't had any excess sleepiness or anything else undesireable from the new med. It's taken away the 24 hour meltdowns and now when he gets upset it's definitely more in the typical or normal (for Jack) range. It's a temporary measure until we can sucessfully wean him from Tegretol and slowly ramp up his Valproic Acid...and see how his behavior is at that time.
Thanks for all of your thoughts and prayers -- they really, really mean so much!!
His neurologist's last day is next week. He called to check up on us last night and we went over our plan one more time. I thanked him for his help -- and he said to call early next week to let him know how we're doing before he has his last day. Like I said before, I will REALLY miss that man.
Monday, November 19, 2007
Our Family Videos...Through the Years
ENJOY!!
2008 - Jack turns 5, Morgan will be 1 year old!
Swimming Fun! Morgan and Jack 1 year and 5 years old June 2008
Jack Riley on the Go Movie
Jack at Possibility Place 4, 5 yrs old, April 2008
Jack at Possibility Place 3, 5 yrs old, April 2008
Jack at Possibility Place 2, 5 yrs old, April 2008
Jack at Possibility Place, 5 years old, April 2008
Morgan Chasing the Cat 10 months old, March 2008
Jack Climbing onto the Sofa 4yrs old Feb 2008
Morgan Leigh Pulls to Stand 9 mos Feb 2008
Morgan Standing (almost) and Playing 9 mos Feb 2008
Morgan and Jack Playing Jan 2008
Go Go Go MORGAN! 8 mos Jan 2008
Jack Moving Post Botox One Week Jan 2008
Jack's Idea of Fun! Jan 2008
2007 - Jack is 4 years old!
Welcome Morgan Leigh!
Morgan Eating Squash 7 months old -- Funny Faces -- December 2007
Silly Jack Standing November 2007
The Wheels on the Bus (Jack Style) November 2007
Jack Mastered the SPOON! October 2007
Jack, October 2007 Flash Cards
Jack Brushing Morgan's Hair October 2007
Outside with the Reverse Kaye Walker -- Sept 2007
Jack Playing in the Ocean Sept 2007
Jack Loves to be Scared - Aug 2007
Broons...July 2007
Miss Morgan Leigh is not happy! June 2007
Jack Riley says no June 2007
Morgan Leigh in the NICU - May 2007
Silly Jack Saying "Go Lay DOWN" - March 2007
2006 - Jack's 3rd year!
Jack and Daddy Eating Spaghetti - December 2006
Jack Using his Crocodile Walker - December 2006
Happy Jack Riley Talking and Being Silly! Sept 2006
Jack's 3rd Birthday Party - March 2006
Jack's First Independent Steps with Walker-- Feb 2006
Mommy Helping Jack Walk - Feb 2006
2005 - Jack turns two
Jack Just Learned to Pull to Stand and Cruise - July 2005
2004 - Jack is one year old
Jack Swinging at the Park - June 2004
Jack Learning Finger Feeding - May 2004
Jack is Learning to Sit -- May 2004
Jack's Teething and NOT HAPPY! March 2004
Happy Jack Riley Bouncing in his Jumperoo - March 2004
Messy Baby Jack Eating Cereal -- Feb 2004
Smiley Baby Jack Sitting and Playing - Feb 2004
2003 - Jack is just born
Jack Riley Tummy Time -- Aug 2003
Sweet Baby Jack in His Swing -- Aug 2003
Baby Jack on his Play Gym -- Aug 2003
Jack in the NICU -- May 2003
Jack Came off the Ventilator and is on CPAP - April 2003
Mommy Bathing Jack in the NICU -- April 2003
NICU Nurse Showing Mommy How to Bathe Jack - April 2003
Mommy Changing Jack's Diaper in the NICU -- April 2003
Mommy Watching Over Jack in the NICU -- March 2003
Jack in the Isolette in the NICU -- March 2003
Jack and Mommy in the NICU -- March 2003
Thursday, November 15, 2007
Friday, November 09, 2007
Busy, Busy Week!
Monday, November 05, 2007
The Wheels on the Bus...
The Doors go Open and Shut...
The Horn goes BEEP, BEEP, BEEP...
All through the town...
YAY!











