Alexander Gray Foundation

My husband and I are so excited to announce that we are starting a non profit organization called the Alexander Gray Foundation. It is our hope to help families who have children with Cerebral Palsy with financial assistance and any other areas that they are struggling with. It has been a long hard 4 years for us and we hope that we can help to make it easier on other families going through similar struggles. We recieved our first generous donation from our great friends (aka family) John and Erica Ketchum! They are providing the start up finances needed for attorney fees to make sure everything is legit. We are so thankful to have so many supportive friends and family! I started a facebook page called the Alexander Gray Foundation. Please come "like" the page for updates on ways you can help and upcoming events.  If you would like to make a donation or suggest a family for assistance please contact me. Thank you so much in advance for your support in this amazing endeavor! http://www.facebook.com/alexandergrayfoundation
~Stacey and family

Feeling Hopeful

I will be the first to admit that my husband is the go-getter, get stuff done one of the family.  A few months ago I called him on my lunch break and he was talking a mile a minute.  He had found a video clip of Robotics Therapy being used for children with Cerebral Palsy through MIT.  He couldn't stop talking about how excited he was (he is a big Sci Fi nerd, so this was right up his alley).  Pretty soon I had the fever too!  The next day he decided to write Hermano Igo Krebs who was the head of robotics therapy research.  I thought he was bold and would never hear back from him.  Well we learned that day to NEVER feel like you are being too bold.  He got back to him RIGHT AWAY.  Literally the SAME day!  He told us that Chicago did not currently have the robotics therapy program, but he had colleagues in Indianapolis who teamed up with Riley's and Methodist and they opened a new facility in September 2012.  Riley's is only bout 2 hours away from us.  This could not be better news!  The only hiccup was he needed to be 4.  My husband contacted them anyway and spoke with Ryan Cardin (Kreb's colleague) and he learned more about the program.  They took our information and we waited.  A few weeks before his 4th birthday they called us and reminded us that we were wanting to come in.  They told us to get a prescription from our pediatrician.  We called her and they faxed to Indy without question.  We really have an amazing pediatrician, Dr. Nancy Pudlo, love her!  They called us back and made an appointment for the middle of July. (We just got back)





We decided to go the night before because our appointment was bright and early at 8:30 am.  We booked a hotel just south of the city, Comfort Inn and Suites.  Ummm... I would NOT recommend this place!  We got there and it seemed great.  The front desk lady was really nice and got us checked in at an absurdly fast rate.  We got into our room and it was HUGE!  The kids were so happy to be out of the car and they were all over the room.  We sat down on the floor on a towel and ate Subway and life was good.  We had been telling Gavin that we would go swimming when we got to the hotel.  He was ready, so after dinner we started getting dressed.  I was standing at the side of the bed and I looked down and was getting ready to yell at my husband for throwing a broken nail on the floor, but when I looked around they were ALL over!!!! I was DISGUSTED and wanted to VOMIT immediately.  We hurried up and got into our swimsuits and Rick went straight to the front desk.  They went up and vacuumed immediately, but I was already mortified and couldn't get that picture out of my mind.  We played in the pool and the kids had a great time anyway.  Night came and I could hardly sleep, but I fought away my disgusted fears and got a few hours.  The next morning came and I was ready to pack us up and get OUT of there.  We finally got on the road.  Finding the facility was very easy.  Since it was early there was very little wait time.  We got into the room where the evaluation would happen to see if Gavin would qualify.  We met a very knowledgeable PT, Angie.  She chatted with us and was great with both of our kids.  She finally got to the part where she needed to measure Gavin to see if he would fit in the robot.  The kids need to be 21 cm from hip to knee.  He was 19 cm on one side and 20 cm on the other. What a bummer!  Even the slighted centimeter can cause problems.  So they told us we need to wait 6 months to a year for him to grow and THEN we can get on the waiting list for the lower extremity robot.  She then told us he would be a great candidate for the upper extremity arm robot.  So we got on the waiting list and will probably begin in August!  It is a 9 week program, 2 days a week.  Unfortunately the days are not consecutive.  So the nurse did some checking and Ronald McDonald house would be available to us!

We are so excited for this cutting edge technology.  There are no negative side effects to this therapy.  He can only get stronger, so we are feeling HOPEFUL!  I will keep you posted and hopefully have some great pics to share.  In the meantime, check out the video above that turned us on to this amazing therapy!

~Stacey

Places to Eat with Allergies

Picking a place to go out to eat is one of the biggest debates my husband and I had before we had kids. Most nights we would end up going to two separate places just because it made everyone happy.  Now that our son has a peanut allergy the debate has taken on a whole new meaning.  We always have to make sure it is safe for Gavin and then there is always that lingering fear if it is a new place.  We usually end up going to McDonald's just because we are POSITIVE it is safe.  Most restaurants have pretty good information on their websites.  You usually click on the menu and find where it says nutrition information or allergen information.  After we confirm online that it is safe, we go to the restaurant and speak with a manager.  It seems like most managers are aware of the severity of allergies and are able to speak with confidence about what is safe.  I never trust a waitress or hostess simply because they most likely have not been trained on food allergies.  Here is a list of our favorite places to go.  Remember every place is different and products can change.  Always speak to a manager or chef and make them aware that they are dealing with an allergy.  As always remember to bring your Epi-pens and Benadryl into the restaurant with you!

McDonald's
Burger King
Chili's
KFC
Subway

I am sure there are more, but having trouble thinking of them right now.  If you have safe favorites please comment!

~Stacey

Edit: I want to include a few places that are definitely NOT safe: (please comment about this list too!)

Texas Corral (peanuts everywhere)
Texas Roadhouse (peanuts everywhere)
Five Guys Burgers and Fries (use peanut oil and have peanuts in restaurant)
Chick-Fil-A (use peanut oil)

Disney with a Disability

Disney with a Disability

Visiting Disney with Gavin's Cerebral Palsy couldn't have been a more enjoyable experience!  They really take care of families with a disability to make it magical for everyone.  When you arrive at your first park of the trip, head straight to guest services.  We went to EPCOT's guest services.  It is located under Spaceship Earth to the left.  We spoke with a Disney Cast Member about his disability and without question they got us set up.  I was expecting to have to show proof because sometimes it is hard to tell that Gavin has a disability.  They give you a card to carry and if you are traveling with a stroller they give you a tag to attach to the stroller that says you are using it as a wheelchair.  My only advice is to make sure you attach it to the TOP of the stroller.  We got questioned a few times because they didn't see the tag right away.  The tag and card gave us the ability to go through the fast pass lines or through the handicap entrance, so there was less of a wait time and we were able to bring the stroller with us.  The only thing you couldn't do was use it for rides that he wasn't big enough for.  So if you want to do those be sure to get a FastPass. 

The one thing that got under my skin is how rude some people can be.  I had several dirty looks from guests in the park and even had a few say nasty things to me.  Unfortunately Mama Bear came out and I put them in their place!  People really should mind their own business sometimes! LOL!

Hoop-Dee-Doo Musical Revue

Day 5

Hoop-Dee-Doo Musical Revue

Fort Wilderness-Pioneer Hall

Disney Dining Plan: 2 Table Service meals each person

This was a PERFECT ending to our trip!  I HIGHLY suggest making your way to the Hoop-Dee-Doo Musical Revue.  It is a great interactive show with FANTASTIC food!  We were at table 62 and it was truly like we were guests of honor.  Our table was located in the middle of the floor with about 6 feet of space in front of us before the next table.  The actors spent a great deal of time directly in front of us and even sang a song to Gavin!  He is in LOVE!  The chef was the best one of the trip.  He gave us his business card.  His name is Jonathan Sanders.  His email is jonathan.sanders@disney.com.  He spoke to us about both allergens and made a special plate for Rick.  Instead of mashed potatoes he made him a baked potato and corn.  He also brought him a special salad.  Gavin was able to eat the corn bread and everything else, which he loved!  The dessert was strawberry shortcake.  Rick had just the strawberries and the shortcake, no cream.  Gavin had just the strawberries and cream.  It was great!  Although we had such a great table there really isn't a bad table in the house.  My husband and I went on our honeymoon and we were in the balcony and that was great too!  The actors are really all over the place.  The only suggestion I can make sure you leave plenty of time to get there.  It isn't the easiest place to get to fast.  There is a boat from Magic Kingdom to Fort Wilderness, but it was raining the night we went.  So we took a bus from our resort to MGM (because it was the closest park).  From MGM we went to Wilderness Lodge.  There is then 1 bus that goes to Fort Wilderness.  You do not want to take a bus to Fort Wilderness Campground because that lets you out pretty far away from Pioneer Hall.

Salad and Cornbread

A little bit of everything!

Gavin's girlfriend! LOL

Gavin clapping along

Strawberry Shortcake.  Sorry for the bad picture!

Les Chefs de France

Day 4

Les Chefs de France

EPCOT-France

Disney Dining Plan: Table Service meal

All I have to say is YUMMY!  We thoroughly enjoyed Les Chefs de France!  It could've been the DELICIOUS wine, but still it was good!  Chef Loic came to our table and spoke with us about Gavin's allergy.  He informed us that the Macaroni and Cheese was safe as well as the bread!  We were very excited because the bread was off limits everywhere else!  The Macaroni and Cheese was not on the kid's menu, but they made it for him anyway.  Gavin did not have dessert that evening.

Gratin de macaroni - Baked macaroni with cream and gruyere cheese. - $14.99

Demi poulet fermier roti Pommes rissolees et broccoli - Half of an all natural roasted chicken, rissole potatoes and broccoli - $18.99

Plat de cote de boeuf au cabernet avec pates - Beef short ribs braised in Cabernet with pasta, pearl onions and mushrooms. - $22.99 

Filet de saumon, pommes de terre ecrasees au beurre et ciboulette, sur coulis de tomate et poivron rouge - Broiled salmon, Smashed potatoes with butter and chives, served on a tomato and red pepper sauce. - $23.99 

Fraisier, sorbet et coulis aux fruits rouges - Strawberry cake with red berry sauce and sorbet. - $7.25 

Landscape of Flavors

Day 3

Landscape of Flavors

Art of Animation Resort

Disney Dining Plan: Quick Service meal

Picture Courtesy of disneyfoodblog.com

At the Art of Animation there are 4 different food stations ranging from Mongolian to Italian.  My husband wanted Italian for himself and Gavin.  He spoke with the chef about his lactose intolerance and Gavin's peanut allergy.  The chef made them their very own pasta!  My husband said it was delicious!

Rick's is on the left.  They both had chicken pasta, but different noodles.