Merry Christmas, Happy New Year and Happy Holidays to All!

http://www2.snapfish.com/compaq/thumbnailshare/AlbumID=3480904016/a=25902415_7863960/otsc=SHR/otsi=SALBlink/COBRAND_NAME=SNAPFISH/

We hope you have had such a blessed holiday! We did!! We have so much to be grateful for. First and foremost is Aidan's health. Not too long ago he wasn't breathing and we sat day by day praying for his recovery. Our prayers along with all of yours were heard and we were able to celebrate this holiday season with Aidan home. We could not have gotten through these last few months if it were not for your help. The calls, visits, meals, financial contributions, love and support was truly unbelievable! Even today we are still receiving support by means of cards, store gift cards and financial gifts.

On Christmas Eve day Zack, Taylor and Aidan and I were home talking about Christmas. Zack said, " Mom do you think this is going to be the best Christmas ever?" I replied, " I don't see why not Zack we already have so much to be happy about." Then he said, "Mom I want to go on a trip." I said " Me too Zack. Where would you like to go?" He replied, " Disney!" I said, " Me too Zack. Let's start saving and I promise we will make it happen this year sometime!"

Just about 2 hours later the door bell rang and the kids and I went to answer it. It was a woman from the Randolph support staff acting as our Christmas Angel. She explained that they read about our story in the Randolph Reporter and have been following the blog. They along with the BOE Grounds crew decided to forgo their holiday party and make a donation to our family. They thought what greater gift then the gift of cash to a family who has had a rough few months. She came in and we shared her story with Aidan. He opened the card and out fell a lot of cash. Aidan went crazy! He was screaming, smiling , laughing and down right elated. I really can't remember when I saw him so happy.  He asked , "How much is it?" I explained it's rude to ask that question but Jenette said to count it. So he did. They generously donated $500. She explained it's for the family to do with want they wanted and it came to us... DISNEY! It's a start. Of coarse the boys have no concept on how much it costs to go so I needed to explain - this is a start. So we put it in the jug and vowed to continue to make contributions to make our trip a reality. Santa came early! The Christmas Angels of  the Randolph Support Staff and the BOE Grounds crew made our Christmas a continued stream of gratitude for everything we've received these last few months for all of you!

The above link is from our party on Nov 13th. You do not need to pay anything to set up an account with snap fish so log in and view the great photos courtesy of good friend Pete Mauro.

Thanks again to everyone. We are wealthy with love and gratitude. We have each other and we have you. Thank you! Thank you! Thank you! We wish you all the best always and especially for a terrific 2011.

Aidan is busy with PT, OT a few times a week and continues to make great strides. After 5 weeks of struggle we were successful in obtaining him help in school to catch up on his skills and with PT. He's confidence gets better with his increased successes. He's had to endure more than most would ever in their lives and yet even today he said to me, "Mom why do you think God allowed me to get this virus? Is he just testing me to see if I could handle it?" I said, " God gives us only what we can handle Aidan and he probably knew how strong you were and that you were able to work hard to show yourself you could beat it and return even stronger."  I followed with how proud of him I was and how much me and many others love him. He should also be proud of himself!

Stay tuned.. we'll keep you updated. Thanks again and have a Happy and HEALTHY New Year!

Love,

Kim, Taylor, Zack and Aidan

Truly a time to say thank you to all of you! Happy Thanksgiving!!

Wow, what a fabulous night at the Elks Club on Saturday Nov 13th. I was blown away by the support in attendence- over 200 of you- "Aidan's Angels" showed up to enjoy an evening filled with terrific music, great food, awesome auction and raffle items and undeniable love and support of you all! These last few months the support that we have received has been phenomenal. We have had outreach from neighbors, family, friends, school friends, clients, work friends, the church, chamber friends, tball teams,  friends of friends, strangers, classmates and many more. I had the Randolph bus drivers come up to me at the benefit and introduce themselves. They said they heard about our story from someone at the dog pound. I don't even know who there knew or how. Unbelivable!!The Randolph reporter ran an article on Nov 11th about Aidan's story. I will post the link next time. My friend Pete Mauro was kind enough to photograph the evening and I will also post those pictures shortly so check back.

My cousin Jenny had the idea to host such an event on day 2 of ICU. If it wasn't for Jenny's vision this night wouldn't have happened. The Elks so generously donated the facility and my sister Carolyn worked tirelessly on the auction and raffle. My brother Scott got the food donated by his friend Ed Meyer at Sysco Foods and Scott hosted the cooking facility at Mineral Springs Resort and Spa for us( sister Taylor, Scott, friend Everton and myself )  to cook for you. The list goes on and on and hopefully you received our brochure when you checked in at the event with a complete listing of all of our angels. Thank you again to EVERYONE who helped and thank you to you for coming. It meant the world to us. Your prayers were heard and Aidan is on the way up and will soon be back to his normal self.

Aidan started school November 15th and had a challenging week. Remember this has been the longest summer of his life- 5 months. It will take some time to adjust but I know his strength and determination will persevere. He is frustrated with his inability to be running around with the other kids and I think his attention span is a little off considering he hasn't had this kind of time structure in a long time. It's getting better but not with out tears and some negative thoughts. He has had his physical therapy and occupational therapy evaluations and he'll be going to PT 2 x a week and OT 1 x a week for a while. He is encouraged to walk without the walker! We are busy advocating for the resources he needs and is entitled to with the school system. Budgets- Budgets. It appears Aidan is entitled to help within school hours for some PT, OT and likely tutoring. We are awaiting a response requesting a formal evaluation by the school. Pray they do the right thing and give Aidan all he needs to continue accelerate his recovery.

This Thanksgiving more than ever we are grateful for our health, love that surrounds us and our terrific support system. No one can do this on their own. I know this all too well! I am extremely motivated by our experience to pay it forward and help others in their time of need. So my dream to start a foundation for families in transition will soon be a reality. I have recieved advice and support from chamber friends in the area of tax and  legal documentaion preparation. The "foundation" is in the works. We're working on the details one of which is the name. "Aidan's Angels" is taken so we'll likely add another word to the title. Stay tuned for details as they unfold.

We wish you and your loved ones a blessed Thanksgiving! Love to all of you!! Thanks again!!!!

Kim

Directions from All Points to the Event and Silent Auction Update

 

Sparta Elks Club

6 West Shore Trail (Lake Mohawk)

Sparta, NJ 07871 • 973.726.0169 • www.spartaelks.org

From NYC

√ via 78W/Holland Tunnel - Rt. 24 W to 287N (about 4 miles from 287) to 80W (11.5 miles) to exit 34B (Jefferson/Sparta) 15N*

√ via 80W/GWB - (35 miles) - to 15N*

√ via Lincoln Tunnel - 495W (3 miles) to 3W (10.6 miles) to 46W (approx 3 miles) to 80W.  You must be in the center lane when approaching the 80 junction in order to pick it up when the road forks right and exit left. Follow to 15N and pick up directions below.

From Pocono Mountains

√ Rt. 80E (39 miles) to exit 34 Wharton/Dover/Sparta 15N*

From Morristown Area and South Jersey - see above from NYC – pick up at 287N

√ Pkwy N to 78W 24 W to 287N (about 4 miles from 287) to 80W (11.5 miles) to exit 34B (Jefferson/Sparta) 15N*

√ Tpke N 287N to exit 10 through Morristown to 80W (see above)

 *ONCE ON 15 NORTH

1. Go 7.8 miles to the Sparta/Lake Mohawk Business District exit
2. Go .3 mile off exit
3. Go Right on
   Blue Heron Rd.
   for .2 mile
4. Continue straight on 181N/Woodport Rd. for 1.6 miles
5. Turn Left on
   Winona Pkwy
   for .1 mile
6. This takes you into the Lake Mohawk Village Center.  Go directly across the main street to get on West Shore Trail.  West Shore is right in front of you between the pizzeria and ice cream shop.
7. The Elks Club is on the Left next to the Mohawk Country Club (which looks like a castle). Parking on the street or in the gas station/repair shop lot across the street from the Country Club.

Update on Silent Auction 

Abbreviated list of all the amazing items that have been generously donated

Autographed footballs, t-shirts, hats from: Coach Lou Holtz,  Boomer Esiason, Derek Jeter and Phil Neikro (Knucknsie) and the Jets	Autographed CD’s, posters and other memorabilia from Selena Gomez, Plain White T-s, Atreyu, Miley Cyrus ‘Hannah Montana’, Jesse McCartney, Jonas Brothers, Rascal Flatts, Dakota and Elle Fanning
Round of Golf for 4 – Trump National Golf Course	Personal Aerial Banner Advertising/Messaging
Will Preparation and Estate Planning	Neiman Marcus Beauty & Fragrance Basket
Classic Plane Ride	Andre’s Cooking Classes
Gift Baskets:  Black Label Choppers, Movies, Tea Time, Haircut/Blow-dry from Amici’s, Proctor & Gamble, Massages and The Hair Gallery	Bobby Flay and Paula Deen Gift Baskets and Autographed Merchandise
Exceptional Flooring Concepts Gift card	VIP Tickets to ‘The View” and Carrot Top in Las Vegas
Piano Entertainment Package and 6 CD’s.  Renowned, Classically trained, Juilliard graduate Rio Clemente is offering 2 hours of private play for a cocktail or holiday party	Broadway Tickets to Wicked and Rock of Ages both packages include $100 Amex Gift Cards
Black Bear Gym Membership	Customized & Personalized Pilates Mat or Reformer Training
Goalability Self Development and  Vemma Gift Package	Suburban Furniture Gift Card
Raffling off Gift Cards to: Charley’s Tavern, Sheridan’s, Arthurs St. Moritz, Krough’s, Sparta Lanes	Minerals Resort Weekend Getaway and Inn of the Hawk Gift Certificate

$25 per/person at the door • Appetizers, Dinner Buffet & Desserts • Cash Bar • 3 Bands + DJ

Please RSVP to aidansangels04@yahoo.com or via FaceBook http://www.facebook.com/event.php?eid=152892201415932

100% of the proceeds are being donated to the family

Home Sweet Home! Address and directions for Aidan's benefit.

Aidan finally left Children's Specialized Hospital yesterday! He spent countless hours in therapy working on regaining his strength. By discharge date Aidan was able with close supervision to gingerly jog on the mat for a short distance. He is still best with the walker as it provides the support for him to walk heel toe and learn to use his toes for balance. Aidan invited his team of therapist for lunch on Tuesday for one last hour together as a thank you for their dedication to his health.

Aidan returns to school on Monday and will have the support of an aide until he no longer has "fall precautions". He's excited to get to know his classmates better and visit with old friends. His brother and sister are especially glad he is home as well as the neighborhood kids.

Today on the front page of the Randolph Reporter is an article about "Aidan's story". This weekend we are so happy to celebrate Aidan's progress with a benefit at the Elks Club in Sparta, Lake Mohawak
6 West Shore Trail
Sparta, NJ 07871-1829
(973) 726-0169

DIRECTIONS:

From Randolph, NJ

Take NJ-15 N/W Clinton St
Continue to follow NJ-15 N 1.7 mi
10. Take the ramp onto NJ-15 N 8.4 mi
11. Take the exit toward Sparta/Lake Mohawak/Business District 0.3 mi
12. Turn right at Blue Heron Rd 0.2 mi
13. Continue straight onto NJ-181 N/Woodport Rd 1.6 mi
14. Turn left at Winona Pkwy 0.1 mi
15. Turn right at Co Rd 613 56 ft
16. Take the 1st left
Destination will be on the left 144 ft

6 West Shore Trail, Sparta, NJ 07871-1829

PARKING ACROSS THE STREET AT THE COUNTRY CLUB!
See you there 6 pm - AIDAN WILL BE OUR GUEST OF HONOR!

We will have a raffle and silent Auction - Some awesome items to look for include:
Autographed footballs from Lou Holtz and Boomer Eisason
Tkts to Wicked and Rock of Ages on Broadway
Weekend getaway in Lambertville, NJ - Bed and Breakfast
Autographed items from Dakota Fanning, Miley Cyrus, Plain White T's and more
Round of golf at Trump National Golf Course
Many local restraunts
Personal Aerial Banner advertising
Gifts from Neiman Marcus
Complete Will and Estate Planning analysis and prep
VIP tkts to the View
and much much more!

Donations being accepted via www.ChipIn.com - Thank you for your generosity!

Halloween Pictures

IN THE HOME STRETCH!! DISCHARGE DATE SET FOR NOV 10TH! ZACK'S BIRTHDAY!

Aidan continues to make tremendous strides daily. His attitude and drive are admired by all the staff. He is warm and considerate to the other patients. He has made friends of all ages. He walked through the entire hospital while trick or treating on Friday! He's walking quality is best with the walker. He's still working on building muscle and core strength.

 We were able to bring him home for a day pass for Sat and Sunday this weekend. He misses home a lot and misses his family and friends. He enjoys hanging at home with Zack and the neighborhood kids. He has re visited some of his favorite activities like playing Wii! He's lobbying for his room to be painted so it looks like we'll be painting this weekend! We enjoyed a few hours at a Halloween party where there were inflatables that doubled as phyical therapy for Aidan to navigate his way through with the help of his big brother Zack. Taylor joined the family for the afternoon so she could see her brothers in costume. Thank you to Aunt Carolyn and Ned for inviting us to the neighbood festivites.

Monday we had a school visit to plan Aidan's return. The room was filled with our Phyical Therapist, Child Life Specialist, the Principal, VP, Nurse, Child Study team represenative, his teacher, Mom and Dad. Aidan wanted to know why so many of us were for him! We walked his route to ensure he'll be able to get to his classes. Likely he will need an aide to help for the first few weeks as he continues to improve his stength.

Last night Aidan returned to the PICU unit at MMH to visit and show them how far he has come in 30 days since he left there. They were happy to see Aidan. Most times they never know how the kids do after they leave. We wanted them to see that the fantastic care they provided has paid off!

We are working hard Monday - Fri to get home for the weekends. I've told Aidan he is like the rest of us now.. working for the weekends! Soon we'll be home and celebrating his recovery with all of you! Don't forget to RSVP to our event on Sat Nov 13th! You can do so by email to aidansangels04@yahoo.com.  We have awesome silent auction and raffle items. How about a getaway to Lambertville at a Bed and Breakfast or to Mineral Springs Spa and Resort? How about recieving authentic autographed items from Lou Holtz, Boomer Esiasson, Dakotka Fanning or Hall of Fame baseball player Phil Niekro and much more!!

See you soon. Love to all!  Kim

Who let the dogs out?!

Aidan and Bitsy the dog playing Uno.

A close game between Aidan and Bitsy!

Today Aidan played volleyball with very little assistance and walked some stairs!  Seems like a huge accomplishment, huh?  Well, that 's nothing compared to the competitive card game he had with Bitsy the dog! Bisty is able to play Uno, hard to believe I know.  He can recognize colors and numbers.... :) Well, his owner prompts him by voice command.  It was a good distraction for him. 

Don't forget to RSVP to Aidan's Event, it's rapidly approaching! 

A little R&R - Weekend Pass!

Aidan and big brother Zack getting comfy for bed.

Aidan taking a stroll on a beautiful Autumn day. 

Aidan went home for the first time since September 8th!  He had a weekend pass that allowed him to go home on Saturday and Sunday, but had to return to sleep at the hospital for the night.  He is not allowed, by terms of insurance to stay out overnight.  The insurance company feels that if he is well enough to sleep home then he is well enough to be discharged.  Of course Mom and Dad know that is still a little while away.  So, the whole family took advantage of Aidan being home.  He had lots of visitors, played with his brother and a couple of play dates.  He carved pumpkins, played with his dog Casey (who he missed dearly) and just enjoyed being home.  Imagine being away for 7 weeks?  He started to ask what his room looked like and if he had fish.  He was also worried the dog wouldn't remember him.  The homecoming was just in time. 

He is hard at work again at the hospital, the picture above is from today.  And as of today, he is no longer on any medication!  The last of the meds was to ease the stimulation of his nerves re-attaching. 

Aidan is ready for Halloween, he is keeping his costume a secret.... the big reveal is the weekend.  Stay tuned!

Donate via www.chipin.com

Keep on truckin'

Strengthening himself on his personalized tricycle

Cruising around the halls!  Mom couldn't keep up with him.

Mom having some fun in PT with Aidan.

Aidan improves everyday!  While this sounds positive, and it is, keep in mind sometimes patients recovering from GBS sometime plateau.  This was and frankly still is a fear for Aidan's Mother and Father, but thankfully he is still progressing daily.   He continues to be determined to do things on his own.  In fact, just yesterday he used his walker to get himself to the bathroom and take care of business on his own. 

He is all smiles for the most part however, sometimes he gets frustrated but that quickly disappears.  His schedule continues to be rigorous with back-to-back therapy sessions of all kinds.  We are hoping for a November 11th release date!  Just in time for his big night out at the Elks Club with his friends and family. 

Aidan's 6th Birthday - Learning to walk all over again.

6th birthday

Aidan turned 6 this week!  We had a party for him at the hospital and the whole family and lots of friends were there.  He got lots of gifts!  George's friends from work all chipped in for a Wii system and DSI's for both Aidan and Zack (Zack's birthday is November 10th).  Then everyone else bought games for the DSI systems.

On his birthday he had a special pass and and went on a road trip with Mommy.  They shopped for party favors, snacks and he got his very own CD player.  He was never so excited to go to K-Mart and Stop n' Shop in his life.

Last night he did a field trip with 4 other kids from CSH to the Halloween store in the pouring rain.  Imagine 5 kids in wheelchairs piling into a van.  It took about an hour to load everyone and the store was only 5 miles away.  Mommy followed in her car.  They shopped for about 45 minutes and he picked out a Ninja costume for Halloween.  It didn't take as long to get back.  It was amazing that such a young girl was driving the bus and in charge. 

It's been a busy week for Aidan, here is a list of some of his accomplishments: 

• He used the parallel bars and walked about 30 feet in total
• He has been using a walker and has continued to log some distance on that
• He stepped down to a manual wheelchair vs. the electric one and now wheels himself around
• He's putting on his own sneakers
• Standing in pool
• Tossing rings and then diving for them
• Played T-ball with the walker - swung at the ball with some assistance
• Played soccer - was able to kick the ball.
• Pulled himself from the bed to the wheelchair
• Pulled himself from the floor into a chair
• Started school this week and started writing - he wrote his name and today wrote his spelling words

He continues to be one of the most competitive kids in Recreational Therapy and takes great pride in beating his therapist Katie.  Mom helps Aidan out by moving Katie's cones farther away so Aidan can beat her and continue to feel victorious.

Tuesday the NY Giants came in to visit and Aidan got autographs and pictures.

Benefit for Aidan - November 13th

Mark your calendars!  A benefit is being hosted in honor of Aidan and his family.

Saturday, November 13th

6:00 pm

Lake Mohawk Elks Club

Sparta, NJ

4 bands will be donating their time and talent

Many helping hands will be donating and preparing food

$25 per/person at the door

Cash Bar

100% of the proceeds go to Aidan and his family

Fun, friends, family and food!  What could be better?

Please RSVP to Jenny Milway Wells jennymilway@yahoo.com or via Facebook http://www.facebook.com/event.php?eid=152892201415932
or call Carolyn.

Jenny is Aidan's third cousin on his Mother's side and has generously dedicated time to organize this event while juggling 4 kids.  We thank her for that immensely!

The Elks Club has donated the use of their venue and made a donation as well.  For those of you who may not know more about the Elks read below.

OVERVIEW OF THE BENEVOLENT AND PROTECTIVE ORDER OF ELKS
***ELKS CARE - ELKS SHARE***

The BPOE is one of the oldest and largest fraternal organizations in the country. Since its inception in 1868, the Order of Elks has grown to include more than 1 million men and woman in more than 2,100 communities.
The BPOE is committed to the ideals of charity and patriotism. To that end, Elks have now given away, over the course of the Order's history, more than $3.6 billion in cash, goods, and services to our nation's youth, it's veterans, the disadvantaged and handicapped, and to individuals and groups in support of patriotic and civic programs. Annually the Elks give more than $200 million to these causes. The Elks rank as one of the largest private providers of college scholarships in the nation.
The Elks have created a quiet network of good deeds that has profoundly changed millions of lives for the better, yet there is little public awareness of our vital work. Why is this so? Quite simply, the Elks rarely seek recognition, nor have they gone to the general public with fund-raising efforts, nor have they received monies from any level of government. Actually, the flow of money and goods moves in opposite direction, the Elks donated to the government the first veterans hospital, the contribute regularly to schools and police and fire departments, and they assist the young and needy throughout the nation.
How could this powerful force have come into being? And where does all this charitable giving come from? From the generous hearts of our members whose eagerness to share, whose prudent long term planning, and whose willingness to serve for free and with enthusiasm infuses the Order with an exuberant and enduring expression of the true volunteer spirit.
Of note is the fact that the elected leadership of the Elks, from the Exalted Ruler of the local lodges to the national president, known as the Grand Exalted Ruler, as well as other decision makers at various levels- serve without salaries.
The Elks organization is governed through democratic representation, with overall statutes set by voting at national conventions. The Elks national headquarters is in Chicago. the Chicago campus is also the site of the Elks National Veterans Memorial building, and is the home of the Elks National Foundation, the Order's charitable trust, the Elks National Veterans Service Commission, and The Elks Magazine, the official monthly publication that is sent to every member of the Order.

Aidan, Zack and Mommy enjoying Friday night pizza

A BREATHE OF FRESH AIR

Weekends here are long at CHS. Fewer apts on Sat and none on Sundays. But we got the green light to go outside and we did so Friday night for ICECREAM. We walked about 5 blocks through traffic and the hussle and bussle of Rutgers football game. Today we walked to the park and I slide with Aidan down the slide and pushed him in a smaller childrens swing that allowed him to sit back and enjoy the ride. Tomorrow we will walk downtown for a family dinner.

Today he asked "Mommy, what happened to me that made me be in the hospital?" It was the first time he actually asked.  I explained he caught a virus from some germs like a cold. He quicky responded I always wash my hands. I explained anyone could have caught the virus but everyday he is getting stronger and soon he'll be better. He is asking more questions and showing his sadness as to why he's in the wheelchair. Today he said , "How come I am the only one in the wheelchair in the family?" It breaks my heart but he's a strong and determined boy.

We had our Patient Family meeting where we review his progress and goals. They feel is doing fantastic but they reminded me that he may hit a plateau or become fatigued quickly. We have been using a regular potty and he was proud to be able to tend to his own hygiene. We still need to use the chair for showers.

Wednesday Oct 13th is his birthday which may prove to be a good distraction with a party and presents. Tonight we unpacked a gift from Aunt Jenny which was an electric plane that hovers through the hallways. It was a great treat for all the kids on the floor since they all heard the hum and emerged from their rooms to see what was happening.

Monday we will likely transition to a non powered wheel chair! Stay posted!!

Still going strong - Aidan can crawl now.

Aidan is a little fighter!  He is improving so quickly and determined to recover.  Not sure if he would say it that way or understands completely what has happened to him, but nevertheless he continues to improve.

His outlook and demeanor when you see him are heartwarming.  Just yesterday he announced, with pride I might add "I can crawl now!"  He was very proud to share that, even showing off for visitors yesterday crawling for 30 seconds around the family lounge.  He keeps his therapists on their feet with his quick witted charm and coy smile. 

Yesterday he was able to hold himself up on the rings in PT for 70 seconds!  A new record!

The schedule is the same as reported earlier this week, Aidan's focus changes hourly and he is not given much time to lay in bed.  Sometimes he gets tired and it hurts him to do physical or occupational therapy, but with a little convincing (and bribing) we're able to help him accomplish the task at hand. 

Save the Date - November 13th

Fundraiser for Aidan and the family
Elks Club
Lake Mohawk
Sparta, NJ
6:00 - 11:00 pm
November 13th
4 bands have donated their time
food will be provided
cash bar
more details to follow

Making Progress - High scorer in home runs!

The perfect representation of Aidan's attitude!

Aidan has been progressing tremendously!  The big news today is that Aidan got his feeding tube out and has resumed a normal diet.  He doesn't have any IV's or tubes of any kind, trust me, he's very happy about that. He is eating chicken nuggets, french fries and pudding.  He is relearning how to swallow so the introduction of normal foods (not soft foods) has been gradual.  He alternates eating with drinking so he can soften the food as it's swallowed. 

He is starting to regain feeling in many of the nerves that were affected by the GBS.  The sensation that he feels when this occurs, is the same that you and I feel when a foot falls asleep.  So, it feels weak with a tingling sensation.  Everything is very itchy for him, especially his head.  This is a good sign that his nerves are healing. 

There is not a minute to rest here with all of the therapies:  occupational, physical, speech, recreational, etc...  They also just added the pool 3 times a week.  Today he had boxing and baseball therapy this is done through a virtual game (akin to a Wii) and we're happy to report he is the high scorer, scoring the most home runs in baseball!  His dexterity is returning slowly, we find he's most motivated by holding his own Hershey bar. 

He's working Mommy for a present every day, trust me, he's keeping count.  He announced that it's been 3 days in a row that he got presents.  They have a recreational room here that has a computer, he conned Mommy into ordering a Sponge Bob watch for his birthday.  We are also going to have his 6th birthday party here at CSH in the family room on October 13th. 

People continue to leave generous gifts at our doorstep and they are transported to him at the hospital.  His hospital bed is decorated with Sponge Bob sheets and pillows compliments of his Aunt and Uncle. 

For those of you who have offered to make food we very much appreciate that.  Just text/call Kim when you are able to make something.

Aidan was transferred to Children's Specialized Hospital

Aidan's true feelings about GBS!  He's gonna kick it!

It's a big day for Aidan!  He was transferred via ambulance this morning, in a monsoon to Children's Specialized Hospital in New Brunswick, NJ. 

Children's Specialized Hospital (CSH) is the preeminent provider of rehabilitation for children who are affected by the most rare and severe ailments.  CHS is the largest free standing pediatric rehabilitation hospital in the United States.  For the last 119 years, CSH has treated children with brain injury, spinal cord dysfunction and injury, premature birth, autism, developmental delays, and life changing illnesses.  If you'd like to learn more please visit their site http://www.childrens-specialized.org/

We are so grateful for the leaps and bounds he's taken this week.  He has been enjoying videos, Wii and ice pops; which Mom helps him hold.  He wants to stay in his wheelchair and doesn't want to be in bed.  Aidan was an active 5 year old before, so he is frustrated that his legs aren't working and his arms are weak.  But, he is alert and happy to see visitors.  He's given Mom and Dad lots of kisses and tells them how much he loves them. 

Keep your prayers coming, they're definitely helping our little Angel. 

Aidan is out of bed!

Aidan out of bed

This morning Aidan was successfully moved from the bed to a wheelchair.  Here he is donning a proud smile.  He was very weak and still can't move his legs, so he needed to be lifted, but nevertheless he's on the move! 

TEARS OF JOY - TRULY THE HAPPIEST DAY OF MY LIFE!

Aidan over the summer at a family party

As many of you know my sister Carolyn has been maintaining the blog for Aidan, but today I wanted to log in personally to share the weekends amazing updates.

 

Saturday morning they systematically lowered the vent ultimately to zero and Aidan was breathing fine on his own. His blood gas remained good and did his vitals.  I can't explain what a relief it was to see him that stable. Since he lost his autonomic functions (ability to regulate this blood pressure, etc.. ) the fact that this has normalized is proof his nerve functions have repaired themselves for these controls.

 

Around 1 pm they prepared to pull the tube and with a team of doctors and respiratory therapists; and Mom and Dad of course they pulled the tube.  At first they didn't hear proper lung functions, but shortly they were able to hear perfect lung operations. We think he must have been scared and was holding his breath.

 

They put a mask with oxygen and an Albuterol treatment on him and with in 15 minutes they removed the mask; and put the oxygen into his nostrils. We stood anxiously bedside awaiting a response. And then it came.. He SMILED with his cute little Chiclet teeth and said "Mama"! I said "ah buddy, you are going to make me cry", he smiled even more.. I  said "you think that's funny that you're going to make me cry?" We were laughing, crying and smiling from ear to ear. I can honestly say, I had NEVER been happier in my life. It was a miracle, an awakening. We've always said our lives' story would make a best seller and this just added the best chapter in my life.

 

They have stopped all medications except the methadone, that they are using to ween him off the pain meds. They pulled most of his IV's, except the one for his plasmapheresis (which today will be the last round) and then we will pull the femoral line which is causing him discomfort in his left leg.

 

We are currently waiting for the speech therapist to come and evaluate Aidan's ability to swallow. He's currently still getting his nutrition through a feeding tube in his nose. If all goes well it's possible he gets the feeding tube out today!

 

We already met last week with the representative from Children's Specialized Hospital in New Brunswick. We expect to see her again today and confirm when they have a bed available for Aidan. Our guess is by Friday we'll be moving there for a while. Their program is fantastic! They offer everything from Physical, Speech, Occupational therapy, Nutritional Counseling, Psychological, Swimming, etc...

 

Currently, Aidan moves his arms but not with a tremendous amount of control. He can wiggle his toes, but can't move his legs to speak of. As mentioned in previous posts, we expect this to take the longest to return. We only pray it does and with a complete recovery! Both his eye lids open completely and his facial expressions are clear and purposeful. He is talking, albeit softly and not too often as we imagine his throat is sore from the tube being in for so many days.

 

Aidan was up all night last night and is still awake now.. I don't understand why he isn't exhausted. I am! The child life specialist came in to visit and offered us the Wii and we asked for Go Fish cards. While he can't really hold the remote or cards I will assist him.

 

We are so happy of the progress and pray it continues. Thank you to everyone for your love and support! Many continue to ask what can they do.. stay tuned for detail for an evening out. My cousin Jenny has 4 bands which have volunteered their time and the Elks club is donating the venue while others are offering food. We will likely hold an event in late October or mid November on a Saturday night. We are also working through details to start a foundation called Aidan's Angles. Which all of you are!

 

The mission is start a foundation to assist families through this difficult time. In the future we'd like to help others and pay it forward so others can have one less thing to think about during their time with a sick child. There is no other place that we need to be then here for Aidan. The normal routine of work and managing life outside his recovery has been non-existent. You, Aidan's Angles have helped us tremendously. So, stay tuned for a night of great music, food and celebration. We already feel celebratory for the answer to our prayers to have Aidan smiling again.

 

Much love to all,

 

Kim, George, Taylor, Zachary and Aidan.

Slowly, but surely. 2nd Round of Plasmapheresis

Today Aidan had PT again to maintain/increase his range of motion and also to stretch his muscles. He gets tight from just laying there, especially his chest.   Its’ painful for him, he winces his face and you can tell he’s in pain and difficult to watch since you know it’s hurting him.  He was able to push back on the therapist’s hand with his leg, but this also obviously was causing him great discomfort.  

Tomorrow we are hoping that they will remove the breathing tube, as a result of lowering the vent to 10.  Over the past few days they have titrated the vent down, so that he can learn to breathe on his own again.
Day 2 of the 2nd round of plasmapheresis.  The specialists are pleased with his progress.  Remember we are adding good antibodies (the plasmapheresis) to his body to help heal his nerves, specifically the mylan.  It was expected that his upper body would rebound quicker in part because the nerves are shorter and closer to the brain stem and spine.  His lower nerves are housed in the bottom of his spine and are different in shape.  They resemble the swoop in a horse’s tail and due to the shape it takes longer to heal.  These nerves are responsible for his legs.  So that’s why we have not seen as much improvement in his lower body.  Monday will be his last day of plasmapheresis and the doctors are expecting him to be very responsive.  Even though there is less movement in his lower body he did wiggle his left toes. 

His eyes are open more often now and for longer periods of time.  You feel like he can understand you, and partly he does, but he is still on a lot of medication.  He’ll have no memory of this; his amnesia only allows him to remember in 5 minute increments.  

Aidan is now off of the Nicarpodine (which regulated his blood pressure).  His BP is normal and steady.

He will be starting methadone in the next day or so, in order to prevent withdrawals from all the narcotics/opiates he’s received over the last 2½ weeks. 

He watched TV for the first time last night.  He enjoyed his iCarly and Sponge Bob videos that were a gift from his Auntie Colleen.  

He had a pet therapy dog named Jimmy visit him today.  Jimmy was partly up on Aidan’s bed with his two front paws and we had Aidan pet Jimmy.  We know if Aidan were fully aware of Jimmy he’d be thrilled as he loves his dog Casey.  

What can I do?

Many of you ask "What can I do"?  Since the family is living primarily in the hospital, home cooked meals would be great!  Even prepared take out.  Kim and George need to take care of themselves and Zachary's Grandmother is taking care of him on the home front.  Everyone is operating on limited sleep and meals on the fly. 

 

So, any meals would be appreciated. 

 

 

There are some great restaurants in the area (some that deliver for those of you who are not close by):

• The Market Basket makes great prepared food and delivers http://www.marketbasket.com/
• Morristown Deli  http://www.morristowndeli.com/
• Bensi - Denville http://www.bensirestaurants.com/index.php
• Mario's Pizzeria - Randolph http://www.mariosfamouspizza.com/
• Cullin's - Florham Park  (973) 822-0882
• Sergio's - Denville  http://www.sergioandco.com/
• Five Guys - Parsippany/Denville  http://www.fiveguys.com/home.aspx
• Burrini's - Randolph http://www.burrinis.com/
• Delicious Dinners - a family friend who has a local catering business http://deliciousdinners.blogspot.com/2010/09/delicious-dinners.html

Here are some suggestions for meals:

Soups

Chicken

Roasts

Pork chops

Rice

Baked potatoes

Steamed veggies like broccoli & carrots

Really, anything except seafood.

 

Or even gift cards to the Acme or A&P to pack Zack lunches and buy fresh fruit, produce, cold cuts, etc...

 

Please use microwavable containers if at all possible. 

 

If you'd like to make something or order something, please email Kim to coordinate with her what you'll be able to bring and when. 

 

Many thanks!

 

 

 



 

Aidan ends his Summer in the PICU - Fall is here.....

He continues to be agitated and frustrated when he is rolled over.  They have to bolus dose him; but overall his levels have been lowered.  Lowered the vent to 20 and he did well.  He should have had PT today but they did not show; it'll be addressed tomorrow. 

His eyes are opening better.  It looked like he made fist today.  They are going to restart the plasmapheresis tomorrow; we're awaiting for the Pediatric Neurologist from CHOP (Children's Hospital of Philadelphia) to consult with our MD's.

Met with a Representative from Children's Specialized Hospital (in New Brunswick, NJ) today; we're going to visit there soon.  Only 60 beds at this hospital and now Aidan is on the list, it may be an option to go from the PICU directly to CSH.  They have so many services available from occupational speech therapy to psychological therapy to swimming.  He will even be tutored there for school. 

We are continuing to remain cautiously optimistic; and while these are positive signs were a long way from seeing the Aidan we knew before.

Your outpouring continues to touch us.  Even his T-ball team reached out for him; from children to adults everyone is chipping in and we really appreciate it.  College friends, teachers, neighbors, our Parish Priest, you name it, they are all coming to support Aidan and his family.

2 weeks in the PICU - He's regaining his strength!



The Brothers Saigh performing (Aidan left, Zack right)

 Yet another active day for Aidan!  Today his eyes opened 1/2 way and during PT; the therapist pushed his legs up to his chest and he was able to push back.  Very promising, now his strength is returning to his lower body. 

He is less puffy, his color is good, HR & BP are stable.  His BP medication (Nicardipine) has been lowered.  He continues in the rotating bed to keep him comfortable and his circulation up.  He continues to respond to your questions by nodding his head yes or no. 

For the time being, they are not continuing another round of IVIG or plasmapheresis, since he is showing signs of improvement. They are hoping to remove the femoral line soon since it's been in 7 days and the risk of infection becomes a concern.

Day 12 - Team Aidan!



Aidan sleeping with Mommy's socks on

 Today Aidan had his daily chest X-rays and his lungs look healthy. 

Yesterday they reduced the vent from 35 to 25, he responded well.  Today, however, when they tried to reduce to 20 today his BP went up. The idea is that they will reduce the assistance to his lungs and he'll take over from there.  So, while he intermittently over road the vent they didn't want to push it so they went back to 25.

He continues to have movements.  His left arm is intermittently moving, he is moving his tongue in and out.  He can also pucker his lips and does so when RT suctions excess fluids out of his mouth.  He is frustrated and agitated, he crys because he cannot communicate or move the way he is used to. 

He has opened his eyes about 1/2 way - we continue to pray for that to increase.

His neuro exam today showed he did have reflexes in his arms (didn't have any yesterday), but not his legs.  This is natural and expected that he regains his upper body movement first then his brain will send signals and the lower extremities will regain movement.  So we are optimistic that it will all come back. 

Today Kim asked 'do you love your mommy?' He nodded 'yes'.

PT has given him different boots for his feet.  This is to prevent a foot drop and to keep heels from rubbing on bed.

Also, they are moving him to a different type of bed to automatically rotate him vs. manually doing it every 2 hours.

RT is performed by the bed now to help expectorate the secretions in his lungs as opposed to manually performing CPT. 

For the time being we are not continuing the plasmapheresis, the MDs want to measure his changes and continue the next course of action from there.  Essentially they want his body to do the work.

Thank you for all your calls, letters/cards, emails, texts, visits and gift baskets.  Every thought and prayer are appreciated. 

Active Aidan! Day 10

Active Aidan

Great News!  Aidan has been more responsive today than any other day since he’s been admitted.  

Today he started physical therapy (PT), to keep his range of motion.  During PT he moved his right arm, he picked it up and he moved it a few inches on his own.  When his left arm was moved by the Physical Therapist he grimaced somewhat and appeared to be in discomfort.  When she pushed on his shoulder, he pushed back up.

It was an active day and at this hour is likely exhausted with all hard work
His HR & BP are still very high. He still continues to receive meds to relax him, however all of his reactions today are a sign he's awake, but in discomfort.  While we don't want him to be in pain the fact that he feels things makes us happy.

Since he can hear you speaking, we find he gets agitated probably becasue he's frustrated he can't communicate.  Aidan never liked when you speak about him when's he's within earshot, even when telling a funny story or when you were proud of him.  So, we try to address him when speaking about him.  Otherwise we sit quietly with lights dim.  Since he hasn't been outside for 10 days his eyes are sensitive to daylight or bright light. 

He responds to direct questions by nodding Yes or No. 

The RN today asked him would he would like her to move his legs? He shook his head yes.  After moving them she then asked "is that better"? He shook his head no. Then she asked "would you like us to move your arms"? He responded by shaking his head yes.  She then asked "is that better"? He shook his head 'no". 

Its an encouraging day but it's still a long road ahead.  For us, its a combination of tears of joy and tears of sadness knowing he wants to communicate and cannot.

His 2nd MRI is only 1/3 complete, but the Specialists feel they got what they needed at this time in order to rule out to ADEM as a diagnosis, so we'll be pursuing treatment for GBS.

Still continuing plasampheresis, he ffinishes tomorrow.  On Monday we will consult the MD's to determine whether plasmapheresis or IVIG is the next course of action.

All of the prayers are being heard - please continue to pray.

Aidan shook his head 'No' and grimmaced his face!



Aidan donning his rebel attire

 During the night and again this morning Aidan responded to a nurse pinching his hand, he grimaced his face.  The 2nd time she did it he furrowed his brow.  After she suctioned him he shook his head 'No', as if to say 'Stop, I don't like that'.  He is responding to stimuli and questions ever so slightly.  We're thrilled!

Yesterday he was not stable enough to complete the MRI, his heart rate and blood pressure could not be stabilized while being transported on the vent.  He was accompanied by the the MD's and a Respiratory Therapy Supervisor, but even with supportive care and specialists it could not be completed.  We're hoping to try again today.

Another nerve conduction study was performed yesterday and the findings were not the classic presentation of GBS. He has movement in his hands and feet, but only when the probe is placed directly on them and not at the elbow or knee.  This is indicative of nerve damage in the mylan damage - essentially shorting out the nerve endings.  Typically, in GBS that last thing to respond are the hands and feet and his are, so this is still puzzling the specialists.  Aidan has the most rapid onset of GBS in the worst form, at least if it is GBS, which they are almost certain it is.  Typical GBS is ascending paralysis, but Aidan's is descending, which could be another variant.  Most recover 100% with rehabilitative therapy.

The results came back from the CDC - negative for: West Nile, Rocky Mountain and Lyme's.

We have consulted with another Pediatric Neurologist who is locally based but outside MMH's group, as well as another expert at CHOP (Children's Hospital of Philadelphia), who has come highly recommended. 

Today's plan - complete the MRI, consult with additional MD's and continue the plasmapheresis. 

Wednesday's Course of Action

Aidan and big brother Zack getting haircuts

Aidan was unresponsive to the IVIG treatments.  His blood pressure and heart rate were extremely elevated, this lead doctors to believe that there may be pressure on his brain as a result of excess fluid.  A shunt was considered to alleviate the pressure; however it is no longer a consideration after the additional spinal tap and CT scan yesterday.  His CT Scan was not impressive in the grey and white matter, these are subsets of peripheral nerves surrounding the CNS (Central Nervous System).  This is not a 'goal standard' test for diagnosis, but was the only option because his vitals and current condition wouldn't allow for the lengthy MRI procedure. 

Aidan started plasmapheresis therapy yesterday, which is akin to dialysis (in method), in that it removes his blood, separates the white/red blood cells, platelets; as well as plasma and returns it to his body adding healthy antibodies and removing harmful ones.  This is done via a femoral artery catheter (upper thigh).  It's a double pronged catheter, one side removes the blood, the other returns it.  The procedure was very risky because Aidan's veins are small and there was an inherent risk of bursting the vein.  However, the procedure was successful. Because of the plasmapheresis therapy another machine was required bedside, therefore he had to be moved to a larger room to accommodate for the equipment.  So, now he has the corner suite. 

The ultimate goal is to build new antibodies and reduce the autoimmune response his body is having to the virus. An autoimmune response is where the body's immune system attacks itself. We are waiting for movement in his arms and legs as a marker of success. 

Today we hope to receive the results from the CDC (Center for Disease Control), because he is a pediatric patient his labs were expedited.  His panel include: West Nile, Rocky Mountain Spotted Fever and Botulism. 

We also hope that Aidan can withstand another MRI today on his brain, neck and spine.  Each test, combined with the multiple therapies helps to better define/clarify a diagnosis. 

VISITING
We are so grateful for all of your emails, texts, phone calls and visits.  It's times like these where you are truly blessed with loving friends and family.  Aidan's condition changes hourly, and while we enjoy your warm faces, it would be optimal if you could reach out to us prior to your arrival.  Aidan is so lucky to have all of you, but at times many people may come at once and he doesn't get the benefit of a quiet, gentle bedside calling. 

Keep Aidan in your prayers.