Check it out here: http://brookeandbrielle.com/shop/

Next up on the docket for the new year and new evaluations was an appointment with our pediatric orthopedic specialist. He took X-rays of the spine to look for curvature. I have been told that when a child has SMA, it’s not a matter of IF the child will get scoliosis, it’s a matter of WHEN. So we want to keep a close eye on the spine.

SMA is a progressive disease so we don’t expect to hear good news at doctor appointments. BUT, the doctor told us that Brielle has actually IMPROVED since her X-ray taken in 2011!! What a blessing!! Brooke has stayed the same (no curvature) so far. She was a little wiggle worm on the X-ray chair so I’m not sure they got the best picture. :)

We started out the new year with a sleep study. The girls had to sleep in different rooms but after they got all hooked up with wires, Brooke’s nurse let her go into Brielle’s room to so they could see what the other one looked like.

They both looked at eachother and said, “you look funny!”

They both slept pretty good and the nurses both said they got all the info they needed to give to the doctor for his review! Whew!! We should get the results back in about 2 weeks.

“A sleep study may help to determine whether or not there is an obstructive component (due to low muscle tone or enlarged tonsils or adenoids), or whether nocturnal hypoventilation (shallow-breathing resulting in low oxygen levels or increased carbon dioxide levels) is present. BiPAP is often recommended for use only at night, but can be invaluable to use for longer periods of time when an upper respiratory infection or other illness results in increased work of breathing and fatigue.

Children with SMA Type I, and some children with Type II, have very weak breathing during sleep, with short and shallow breaths, and poor oxygen and carbon dioxide exchange (hypoventilation). When this happens, the child has too little oxygen and too much carbon dioxide in the body.

When oxygen levels are too low and carbon dioxide levels are too high, the body cannot function normally. To prevent hypoventilation, some children need mechanical breathing support while they are sleeping to help them rest their breathing muscles. If they become sick with a cold or flu, they may need this support even while awake.

With improvements in oxygen exchange and better sleeping, children with hypoventilation may have less nighttime sweating, fewer headaches, better appetites and weight gain, and better concentration.

There are 3 ways to help children with SMA breathe while sleeping. These include
use of BiPAP, mechanical ventilation, and negative pressure ventilation (NPV).” -FSMA.org

Brielle turned 5 and Brooke 4 years old this year!

2012 seems to be a year of firsts for us!  

 Here are the firsts for our family:

• First sleep study
• Frist time bowling
• Brielle won a photo contest and was on the Cover of Kalamazoo Parent Magazine
• First time fishing
• Started aquatic therapy
• Brielle started Kindergarten
• Brooke had her first haircut
• Brielle donated her hair to Locks of Love
• First sleepover with friend, Evie H.
• Meritor Fundraiser for FSMA – Raised $2875 for FSMA
• Brielle got her ears pierced
• Our family went on our first hot air balloon ride
• B&B fed the dolphins at Sea World
• Eric went to Africa for an Army mission.
• August is declared SMA Awareness Month in the state of MI by Gov. Snyder
• Eric’s dad passed away
• Brooke had 3 stitches in her chin.
• Eric’s military promotion
• We visited our local fire department
• Our dog Mollie passed away
• We met the World’s tallest dog – Zeus
• Brooke was an Ipad grant recipient from the Gwendolyn Strong Foundation
• Our family was in a Commercial for Representative Fred Upton!
• and the best for last… Our family was picked to be the Grand Marshalls of the Disney World Dream come true parade!!  On the same day, Eric was chosen to be the Veteran of the Day at Magic Kingdom Park. 

The firsts for the The Friends of Brooke and Brielle Organization:

• The “flamingo flocking” fundraiser was held during the month of August to raise awareness for Spinal Muscular Atrophy.  It was a great success and we can’t wait to try it again next year! 

For the first time our friends have stepped in to help by selling their own goods to provide their profits to the Friends of Brooke and Brielle Organization!

• The Yummy Cupcake fundraiser held by Marianne
• I can and I will Inspirational Print created by Angi P.
• B&B SMA Awareness Bracelet created by Alex D.
• The sweetest little 5 year old, RaElla dedicated her birthday to raise money for her friends Brooke and Brielle.  
• The Gwendolyn Strong Foundation created a beautiful “I Can & I Will” tank inspired by Brooke and Brielle.

THANK YOU!!!!!!!!!!!

The firsts for Spinal Muscular Atrophy (SMA):

• We have also been involved with legislation called, “National Pediatric Research Network Act”
• Our family visited Senator Hagan’s office in North Carolina with our Aunt Christen to enlist support for the bill.
• Our family has visited our Representative, Congressman Fred Upton, many times to enlist his support for the bill.
• Dec 4 was a historic day for Spinal Muscular Atrophy.  The Recombinant DNA Advisory Committee (RAC) panel approved the gene therapy program so that it could move forward toward human clinical trials.  This is important step #1 in a 3 step process. 

What a great year!  We look forward to an even better year ahead in 2013!  

Thank you again for ALL OF YOUR SUPPORT!  

Grand Marshals in the “Celebrate A Dream Come True” Parade in Disney World.

It was my dream come true. I’ve always wished to give this experience to my children and today was a very special magical day for our whole family! We met our new friend, Mr. Dean at the fire station on Main Street at 2:30pm and there, he greeted us with Mickey Mouse hats/ears with our names embroidered on the back of each and a special certificate to honor our family as the Grand Marshals of the day.

After that, we were led back behind the gated doors to the specially designed car, modeled after a 1912 touring car that serves as the first float in the parade. The car features a few special Disney touches, including Mickey Mouse-shaped silhouettes on the tread of each tire.

Photo Via Disney Parks Blog

We were helped inside the special vehicle and found our seats and magically, Cinderella’s Fairy Godmother appeared at the side of our vehicle to greet us! She gave us a handful of magic sparkles for our journey. Next, we were greeted by Aladdin and his Genie, Ariel and Prince Eric, and MICKEY and MINNIE Mouse! After lots of hugs and kisses by all of them, we were next greeted by Rapunzel and Flynn Ryder! Eugene (Flynn’s real name) showed us Rapunzel’s REAL crown inside his satchel! After a little princess talk with Rapunzel, Brooke and Brielle continued the princess conversation with Belle and the enormous BEAST! The girls were a little scared at first but Belle showed them how sweet and kind the Beast is. That helped them become brave enough to pet his furry paw and arm. Next up for hugs and kisses were Peter Pan, Wendy, Goofy, Tiana and Naveen (The Princess and the Frog), the MAD Hatter, Snow White and the Snow Prince! Then came along Cinderella and Prince Charming with the mice and the evil step sisters! Drizella asked Brielle if they could trade out sisters for a day! Brielle said, “no way!” :) Next they gave lots of hugs to Woody and Jessie the cowgirl, tweedle dee and tweedle dum, the rabbit from Alice and Wonderland, The Queen of Hearts, Mr Smee and Captain Hook, Chip and Dale, Abu the monkey and so many other characters in the parade and even all the dancers!! The girls LOVED all of the special one on one attention and hugs and kisses from everyone. It was absolutely INCREDIBLE! To see our girls SO happy made Eric and I both want to well up with tears. It was one of the best moments of my life, Eric’s life and especially Brooke and Brielle’s life.

After all of that excitement, we heard our names introduced over the loudspeaker as the Grand Marshals of the parade and the doors swept open and away we went, leading the parade down Main Street. It was a good thing I had sunglasses on because “the moment” hit me and there went my happy tears again. Our super awesome friends, Miss Kelly and Mr. Brandon took pictures and videos the WHOLE parade route for us. Miss Kelly was right outside the gates and the first person I saw and she had happy tears just like I did. :) It was such a surreal moment. We all started waving our best Princess waves (except Eric, he waved like a Prince) and I’ll tell you what - Brooke and Brielle kept their arms in the air, waving for the WHOLE parade!! To have SMA and wave your arm for about 45 minutes with no breaks is a BIG DEAL! They were really into it with their slow Princess waves and even blowing kisses to special people in the crowd. I think they won the hearts of many that day. Mr. Dean commented that Brooke and Brielle could give cupid lessons!

Can you see our faces in the middle?

At the end of the parade route, they had a special roped off area for us to watch the parade go past. Each character made a special acknowledgement to B&B as they went past. Eric and I just couldn’t believe it.

Reflecting on our past and all the rough patches we’ve been through as a family. We know what our worst days have been, starting with Eric being deployed for training while Brooke was born, to Brielle’s diagnosis of Spinal Muscular Atrophy (SMA), then Eric being deployed to Afghanistan 5 days after her diagnosis, and then Brooke’s diagnosis a few weeks after that. Suffering through my father’s death, a clinical trial commitment for Brooke and her emergency feeding tube surgery in Utah (you can read all about that here). All while trying to learn the most we can about the diagnosis of SMA. We’ve come a long way but I think Rapunzel said it best… but for the 4 of us - that day in Disney World was the Best.Day.Ever!!

Brooke and Brielle now share something in common with a few famous faces, such as boxing champion Muhammad Ali, comedian Bob Hope and Walt Disney’s nephew, filmmaker Roy E. Disney. They have all served as grand marshals in the “Celebrate A Dream Come True” Parade in Disney World! It is a day that we will never forget!

Thank you Disney World for this very special day. We will cherish it forever!

Our Never Give Up shirts are from the Gwendolyn Strong Foundation merchandise shop.  Get yours here! http://thegsf.org/shop

Dec 30, 2011 Brooke and Brielle had their first sleep study done to check their respiratory function during sleep to get a baseline assment.  It will take 10 days get get results.  Please pray for good results!

“A sleep study may help to determine whether or not there is an obstructive component (due to low muscle tone or enlarged tonsils or adenoids), or whether nocturnal hypoventilation (shallow-breathing resulting in low oxygen levels or increased carbon dioxide levels) is present. BiPAP is often recommended for use only at night, but can be invaluable to use for longer periods of time when an upper respiratory infection or other illness results in increased work of breathing and fatigue.

Children with SMA Type I, and some children with Type II, have very weak breathing during sleep, with short and shallow breaths, and poor oxygen and carbon dioxide exchange (hypoventilation). When this happens, the child has too little oxygen and too much carbon dioxide in the body.

When oxygen levels are too low and carbon dioxide levels are too high, the body cannot function normally. To prevent hypoventilation, some children need mechanical breathing support while they are sleeping to help them rest their breathing muscles. If they become sick with a cold or flu, they may need this support even while awake.

With improvements in oxygen exchange and better sleeping, children with hypoventilation may have less nighttime sweating, fewer headaches, better appetites and weight gain, and better concentration.

There are 3 ways to help children with SMA breathe while sleeping. These include
use of BiPAP, mechanical ventilation, and negative pressure ventilation (NPV).”  -FSMA.org

Brooke and Brielle were able to have the sleep study done on the same night and they slept in different rooms.  They were both very brave while the nurses put all the electrodes on their legs, neck, faces, and all over their heads.  It took quite a while to fall asleep and they both woke up a few times during the night and got scared because they didn’t know where they were.  Luckily mommy and daddy were able to be right there to calm them down.  The nurses said they had enough data for the doctors to analyze, now we just sit back and wait for the results…

I’ve decided to kind of do a time-line for our year in review of significant events.  You can click on any links and it will take you to the original post from earlier in the year if there is something you’ve missed!

February

Feb 12, Brooke gets her power chair!

Premier Designs jewelry party raises $284.75 for FSMA.

March

March 2, Midwest Energy Cooperative features the story of Brielle and Brooke in their March issue of Country Lines Magazine

Thirty-One fundraiser raises $298.20 for FSMA

April

Eric completed flight surgeon school in Alabama.

Easter – Anizella the bunny.

April 17^th - Brooke – RSV. 

May

May 7 – FSMA 5K Walk-N-Roll, Michigan Chapter. Lansing, MI Team Brooke and Brielle Raised $1713.00

May 8 –Local friend, Sydney Potjier, lost her battle to SMA.  :(

Memorial Day - Brielle’s first time fishing with Daddy  -catching a fish!

May 27 – Brielle’s last day of school.

June

June 9 – Brielle walking independently!

June  10^th – Brooke’s first Hippotherapy session.

First trip to Disney World for FSMA Annual Conference.  The trip of a lifetime.

June 25^th – Madagascar Hack fundraiser raises $299.00 for FSMA.

August-  “SMA Awareness Month”

Brielle turns 4!!

Brooke’s last clinical trail visit #8.

Applebees fundraiser rasied $273.44

Brooke and Brielle Art Auction rasied $1750.00

MI SMA Awareness Day Proclamation! Friends and Family in 5 other states!!!

Press release by Tonya Schuitmaker’s office on SMA Awareness Day in MI

Meeting with United States Congressman Fred Upton!

September

September 19 - 2nd Annual Rusty Rudder Golf Outing in North Carolina for FSMA in honor of Brooke and Brielle raises $4,000!

SMA Awareness in the State of Michigan - House Resolution No. 118.  A visit to the Michigan Capitol Building.

October

Brooke won a 268 pound pumpkin!

Halloween – Cowgirl Jessie and Cowboy Woody 

November 

Flower girls for Miss Kelly and another trip to Disney World!

Nov 22, 2011 – Brooke takes her first step!!

December

Brooke turns 3!!

On the cover of the Cheff Therapeutic Riding Center Newsletter!

Brooke and Brielle decorated a gingerbread house and visited the park to see the manger scene and Candy Cane Lane.  So much fun!

This was the first year Brooke was not afraid of Santa Claus! 

She was so excited to see him and wanted to give him hugs. 

Merry Christmas Everyone! 

We arrived at Disney’s Polynesian Resort, Thursday afternoon, Nov 17, and we were told to wait at the entrance because the “lighting of the torch” ceremony was just beginning.  In true Polynesian style, all of the torches were lit and then there was a special fire dance and we had front row seats!  It was a great start to our vacation.

Friday, Nov 18 -

The day of the big wedding!!  We headed to the gorgeous Bohemian hotel in Celebration, FL to get ready with the other guests in the bridal party.  It was fun to get ready with everyone else and be involved in the hustle and bustle of pre-wedding preparations.  Everyone looked so beautiful – like real life princesses!   All of the flower girls were given sparkly Disney crystal tiaras from the Bride!  Once Brielle put her tiara on, she never wanted to take it off.  Brooke was just the opposite; she thought it was funny to flip it off her head…  I guess that comes with being 2 years old.  The girls were both in awe of the bride, “Miss Kelly” with her breath-taking wedding dress, veil and elegant hair and make-up.

After everyone finished getting ready, we headed to the church and the ceremony started right on-time.  Brooke and Brielle were pushed in their wheelchairs down the aisle by two other flower girls, Hailea and Bella.  Brielle did her best princess wave all the way down (flower petals were not permitted).   They both did great sitting still and the only bump in the road was Brooke singing, “Sing sweet nightingale” during the ceremony so we had to make a quick exit because she liked the way her voice echoed in the church.   

Next up was the reception and the girls were excited to dance the night away!!  They made so many new friends and partied late into the night.  What a super fun night and so very memorable for all of us.

Saturday –

We spent the day at Hollywood Studios!

We had VIP seating at the “Beauty and the Beast Live on Stage” show and it was incredible!  Brooke and Brielle were captivated the entire show.  Brooke did not like the end when Gaston and the Beast fought.  First her hands started to tremble and then her whole body started to shake.  She calmed down pretty quickly after seeing Belle in her beautiful yellow gown dancing with the Prince. 

We were also lucky enough to see the “Voyage of the Little Mermaid” show and “Disney Junior – Live on Stage” - it was Minnie’s birthday!  The girls absolutely loved the “Toy Story Mania!” ride.  We put 3D glasses on and shot our spring action shooters at targets on all of the walls. 

One thing Brielle REALLY wanted to do again was to have dinner at Cinderella’s Happily Ever After Dinner at 1900 Park Fare to see Cinderella, the step-sisters, the Prince and Lady Tremaine.  Brooke and Brielle absolutely LOVE the movie Cinderella so it’s a real dream come true to meet some of their favorite characters.

After dinner we visited the gingerbread house at the Grand Floridian and looked for hidden Mickey’s!  They have a little shop there where you can even buy a piece of the gingerbread house, yum!  We spotted a little boy in a prince costume and just had to get pictures.  He was such a little charmer!! 

Just as we jumped on the monorail to head back to our hotel, we realized it was almost time for the fireworks!  So we decided to go to the Magic Kingdom and see them up close, they were so amazing!  The girls were doing really well so we rode a few rides and then stayed for the night parade.  So many characters waved to them, shook their hands, blew kisses, etc.  They really felt special getting all of that attention!  We headed back to the hotel with two tired little girls and slept in the next morning.

Sunday –

We spent the afternoon in Magic Kingdom and it was such a magical day.  We had a special meet-n-greet with Tinkerbell and her friend, Terence, in Pixie Hollow.  It was so much fun to see a Disney fairy up close!  Brooke and Brielle touched her wings and felt her hair.  She gave them some special pixie dust and then we were on our way to the castle for dinner with the princesses!  Thank you, Miss Jodi!!

Miss Kelly made special reservations for us with her friends at the Royal Table.  When we arrived, we found 2 huge princess balloons at our table!  When the princesses came to visit our table they already knew Brooke and Brielle’s names!  How special is that!!  After dinner a royal staff member brought out magic wands for Brooke and Brielle on a pillow!  Wow!  Just when you think it can’t get any better, our waitress brought out a cake with a chocolate glass slipper on top filled with chocolate mousse.  YUM!!  It was extraordinary and we really appreciate the extra effort that was put into our reservation to make it so memorable.  Thank you, Miss Kelly!!

Brielle has been wondering where all the other princes are in Disney World so our friend, Jodi, made another impressive thing happen – we were able to meet Prince Phillip, Snow Prince, and Prince Charming with their princesses at the castle after our Royal Table dinner!!  It was like a dream come true.  There they stood, waiting for us to enter.  Brooke and Brielle had the biggest smiles on their faces with their eyes as big as saucers and hands slowly waving hello.  They all came forward to greet us and crowded around Brooke and Brielle and had royal conversations.  I tried to take pictures as fast as I could and capture those once-in-a-lifetime smiles.

All of that magic and we weren’t done yet!  We still had to see Mickey and Minnie Mouse!!  The wait was only about 15 minutes and then we were greeted by Mickey Mouse himself!  They spent so much time with us and even took the time to dance with Brooke and Brielle!  Awwwww, it made my heart melt!  They were both SO happy and kept telling Minnie “Happy Birthday!!”  As we left, we followed a hallway out that ends in the gift shop, so OF COURSE we had to buy little Princess Minnie and Magician Mickey Mouse stuffed animals.  The girls clung to them the rest of the trip.  We traded pins with the cast members in the gift shop and then they brought out a big stuffed Mickey character with a pin lanyard and Brooke and Brielle were able to trade pins with” Mickey” too! 

Our last Princess to visit was Princess Tiana and Prince Naveen from the movie, “The Princess and the Frog!”  The girls admired Tiana’s beautiful ball gown and all Brooke wanted to do was snuggle up with her.

The park started to get really busy towards the evening so we ended our night in our hotel pool watching the nightly fireworks over the castle.  It was magical and we reminisced about our days in Disney.  There were so many precious moments that we will treasure forever. 

Monday-

On our last day we were able to meet another friend, Brittany, who has SMA type 3 and works at the Polynesian.  She was so sweet and the girls loved meeting another friend with SMA.  She will be such a great role model for the girls as they get older.

Special Thanks-

We would like to give special thanks to Miss Jodi and Miss Kelly for making Brooke and Brielle feel like very important princesses all weekend.  Also thank you to Miss Kelly’s awesome friends, Miss Katy and Miss Jessica for driving us back and forth and Miss Beth and Mr. Mike for being tour guides in the parks!  You guys were amazing and we were so glad to meet you!  Thank you to Miss Heather for all of your help there and back, we couldn’t have done it without you! 

Princess Cinderella …from the castle …at Magic Kingdom …in Disney World …is getting married …in real life.

She fell in love with Princesses Brooke and Brielle when we visited last June for the FSMA Conference.  Since then, we have become friends and she has learned so much about Spinal Muscular Atrophy.  She is such an amazing person who is as beautiful on the inside as she is on the outside. 

The exciting news is that she has asked Brooke and Brielle to be FLOWER GIRLS for her wedding… in Disney World.   OMG!!!!!!  We are beyond excited here at the Kennedy household. 

We will be traveling in a few weeks and CAN NOT WAIT for another magical trip for a fabulous wedding for the most beautiful princess … Princess Cinderella!