I Run 4

I have been wanting to share with everyone about a very special person in my life. I should of done this before now, but I have not had the time to really talk about this in detail. This person is really important to me and so is her family. Meet Erica...

Here is Erica's story:

On April 3, 2002 Erica was born 5 weeks early. She weighed 4lb 14 oz and was 19 inches long. When Erica was born she had a mottled look to her skin and when we asked the doctor about it and we were told that babies get this when they are cold. 9 years later Erica still has the mottled look to her skin especially on her arms and chest. Erica spent most of the first year of her life in and out of the hospital. Erica was diagnosed with severe reflux at 5 days old. This led us to several Endoscopies’ and Colonoscopy’s which came back with high Eosinophil levels and Mast Cells. Between the biopsies, blood work and 24 hour urine test Erica was diagnosed with Systemic Mastocytosis. Erica has been treated by Dr Castells since she was 8 months old.

At Erica’s 7yr old physical I told our pediatrician how Erica seemed to be spacing out a lot. He had told me it goes along with the age and can also be caused by her Mastocytosis. He said to keep an eye on it but he didn’t seem too worried. A few months later these spacing out episodes changed and Erica would get a huge frown on her face that could last up to a minute. The doctor sent us the next day for an EEG which showed Erica was having Left Temporal Lobe Seizures. We then saw a neurologist who  tried several medications to stop the seizures but they were not working well. This is when they sent us to Children’s Hospital Boston.  Dr Theoharides has become a great friend of our family over the years of dealing with Mastocytosis. Dr Theo meet us at Children’s Hospital Boston for Erica’s first appointment in hopes to help this new doctor understand the mast cells and some of the issues they can cause.

In the beginning of 2011 Erica started sleeping 15 plus hours a day. Our neurologist at Children’s suggested that we let Erica sleep as long as she needs and to not wake her up. He was hoping that Erica’s body would catch up on the sleep. This didn’t happen. Erica started sleeping 20 hours a day. After about a week of sleeping this long the doctor set up a spinal tap and a 24 hour sleep study. Dr Theo also received a sample of Erica’s spinal fluid. Erica was diagnosed with a sleep disorder called Narcolepsy and the test that Dr Theo had can came back showing severely elevated Mast Cells and Eosinophil  in Erica’s Spinal fluid.

Erica has several triggers, there are also days that we have no idea what could be causing Erica’s allergic reaction and those are the hardest reactions to deal with. Erica is like a car with a bad thermostat, her body has a hard time adjusting to temperature change and she doesn’t sweat like a normal child which causes her to overheat even when the temperature isn’t hot. Spending  small amounts of time (minutes) in the sun even while riding in the car in the winter can cause Erica to not feel well. Smells are a huge trigger. Something  so simple as hand lotion, perfume, cleaning supplies, other people wearing after shave, deodorant, fresh cut trees, and the list can go on and on.

Stress is the number one trigger for Erica. People think of stress as being overwhelmed. They forgot that stress can be good or bad like emotions, even if they are happy emotions. There are days when clothing is a stress on Erica’s body which can lead into an allergic reaction. The hardest part is not knowing what is going to trigger Erica from hour by hour. Today she could react to something that she was able to do yesterday and then what she reacts to today she might not react to tomorrow. One of the hardest parts dealing with Erica’s Mastocytosis is we are told time and time again by some of the top doctors we are not sure what this or that means. Erica has a lot of the issues that are more common with adults with Mastocytosis then with children. We are currently waiting for some test results to come back from Stanford in California. These results will give us the answers that will lead us to our next road that we shall be traveling down.

Now, here is how I met Eric. I Run 4. What is I Run 4? It is an amazing non-profit that matches runners up with kids (and even older special needs people) who can't run. Here is how it works, you sign up yourself as a runner or as a parent of a child with special needs (physical, mental, sickness). The I Run 4 peeps then match up a runner and a child together. And so begins an amazing friendship! As a runner, I dedicate every run to praying for Erica and her mother and her family. I send her "goodies". I check on her and her family. I help promote her need for a cure for Mastocytosis. I dedicate every mile I run to the sweetest, most deserving kid I know.. Erica! 

We keep in touch via facebook. You can either communicate on the I Run 4 facebook page or on personal pages. I usually take a pic making a goofy face and add the mileage in and put it on her mom's facebook wall for her to see. 

I am currently running to Erica's house. Well, virtually... we are 1,067 miles apart. Erica lives near Boston, Massachusetts. I live near Atlanta. So every run this year has come off our total. I have 541 miles left to go before I get to her house! Erica really wants me to run that last mile right up to her front door! I am going to see what I can do about that ;)

I get lots of race goodies from all the races I take part in. Bracelets, headbands, backpacks... all sorts of things. I also win medals and certificates. I love to send Erica my race swag! She loves it too :)

Race swag on her wall!

Opening one of her packages from me!

I like to spoil her a little too and send her other fun stuff in the mail, like her favorite.. One Direction and drawing stuff. This next pic was for her birthday... her mom made her wait for the actual day before she opened it. As you can see she was not happy!!

I put Erica's name ALL OVER me for races! I also take pictures of all the things I see while I am running.... horses, deer, goats...

Another special person I have met through this is Erica's mother- Kolleen. Words can't describe what an amazing woman this is. She spends every day taking care of this awesome daughter, as well as two other daughters! One of Erica's sisters also has medical issues and I don't know how Kolleen does all she does. Kolleen herself has been battling major health problems as well as a host of other trails and tribulations. I spend just as much time praying for Erica's precious mother as I do her. 

The I Run 4 community is amazing. I encourage you visit their website and think about signing up yourself or your child. The website is: www.whoirun4.com/

The facebook page for I Run 4 can be found here: www.facebook.com/groups/irunformichael

Erica has her own special website as well: www.ericaswalkforacure.com/

Training

It's that time of year again for me. It's marathon training time! The training plan I follow is a rigorous one. It takes me to a mental and physical place like you could not imagine. I run 3 times during the week and one long run on the weekend. Each week adds on more miles until that blissful Saturday morning in November when I run the whole 26.2. I use Hal Higdons Novice 2 plan.

I am starting in on week 4. I did this last year too. It is just too hot to start training in July. August heat is really too hot also, but I try to run late at night or early in the morning to get the miles in. I am already planning out my diet to make sure I get enough protein and carbs. I have already made out my schedule. I have to wrap my mind around the time and dedication this takes. A marathon in 50% physical and 50% mental. No doubt about that. So I have to prepare and stay focused on the goal.

This year, my run resolution was to run one half marathon a month. I am halfway through the year and halfway through my goal! I have ran 6 half marathons so far this year. With the constant training I have been undergoing, I feel like my full marathon this year will be easier than last. I also know what to expect which will help too. 

               January, Red Nose Half, Columbus

                 February, Run the Reagan, Snellville

March, Publix Half, Downtown Atlanta

                    April, Peach Jam, Cumming 

           May, Pre-Memorial Day Half, Lawrenceville

               June, BootLegger Half, Dawsonville

July, Rockin' the LP, Snellville

I have 6 more half marathons lined up for the last half of the year. It has been a challenge, but I have really enjoyed it so far. Can't wait to see what the second half of thus year has in store!

Summer Family Vacation 2014- Disney and The Bahamas!

Wow. What a summer vacation we took this year! This was our annual summer trip as a family. We debated and discussed many ideas. We actually didn't even decide what we were doing until about two weeks before we left! We decided to take the kids on their first cruise! We were a little unsure about taking Kennedy, since she is only 3. She did amazing though! Even more last minute than the cruise,  we decided to leave a little early and visit the Magic Kingdom on the way down. It was fantastic!

We headed to Orlando 2 days before our cruise left Port Canaveral. I found a great deal on a hotel 9 minutes from Disney. We spent the night there and enjoyed the hotel and pool. We headed into downtown Disney for shopping and dinner at the Rain Forest Cafe.  The next morning we were up bright and early for our day at the Magic Kingdom. We reserved several fast pass things for the kids. First was visiting Rapunzel, Cinderella, Anna and Elsa. We waited about 80 mins to see Anna and Elsa. Kennedy LOVES the princesses.  Her excitement and enthusiasm made the small fortune we spent on Disney tickets worth every single penny! She was very serious about seeing them and talking to each one. She got a little upset when she had to wait to see Anna, but Anna calmed her right down and spent extra time talking to her and loving her. So precious!  The big kids have been to Disney before and knew what they wanted to see and do. We hit up Space Mountain, It's a Small World, Dumbo and many others. It was a great day! This family loves Disney World!

The next morning we drove an hour to Port Canaveral to board our boat. We spent 6 days on the Carnival Liberty. This was an amazing ship! It has been completely updated. When we finally boarded, we checked out our rooms (we had to have 2 rooms since there are 6 people in our family). We headed to a late lunch and then off to explore the ship. The kids had no idea what to expect. We had tried to explain the ins and outs of cruising to them on the drive down. Kennedy never really understood she was on a moving boat. She would look out the balcony and assume that other things were moving.  Not her boat. I think maybe the last day she figured it out.

We had late dinner seating every night at 8:15. This was the only choice since we booked so late. It worked out good for us though!  We never felt rushed to get ready and hurry to the 6:00 dinner. Each night we had dancing and fun! We loved our waiter. Our first full day on the ship was a sea day. The girls all went and enjoyed Camp Carnival until about 2. Camp Carnival is an activity based kids program. They provide all sorts of awesome things for the kids to do and supervise all the activities.  Even Kennedy had her own class. They loved it! Later we spent time at the pool and on the waterslide.We then went to dinner where we met some new friends and had a great night!

Our next day was in port.  First stop was Half Moon Cay. This is Carnivals private island on one of the islands in the Bahamas. This is the most beautiful beach I have ever been too. The sand was like moon sand. So soft and white! The water was clearer than pool water and filled with fish and sea life! We took our snorkel gear and even saw a stingray!  We stayed on the beach all day. We were one of the last ones to leave. We enjoyed every second.  They even had a couple of little water slides that Kennedy loved! Half Moon Cay is a must for us to do again.

Day 4 was a stop in the port of Nassau.  Nassau is the capital of the Bahamas.  I've been here 4 times and each time it gets a little scarier. The downtown area is congested and dirty and there is a lot of pot smoking! This time, we ventured through to city to the bus stop.  Their we hopped a bus to a resort called Melia. We bought day passes there so we could enjoy their amazing beach and pool. We took advantage of the paddle boarding, basketball, swim up bar and the most amazing snorkeling!! They had an excellent reef to snorkel at about 150 yards off shore. We spent all day watching the fish there. We even saw a sea turtle!! The kids loved this resort. I would definitely hit this place up again too. Our boat left about 5 that afternoon so we stayed at the Melia until about 330 then headed back to the ship. We stopped in the straw market on the way back and the girls bought handmade straw purses.

Day 5 was our last stop. We spent the day in Freeport on Grand Bahama Island. I am not a huge fan of this port since you have to travel about 20 minutes away to reach the shopping and beach, but we gave it a go anyways. We booked a snorkel trip with Pat and Diane, a local company in Port Lucaya. We chose the 3 hour party boat tour. We had a great time! The water was rough and choppy and we did not let it stop us! The fish were everywhere and would eat right from your hand. The kids had a great time seeing all the fish. 

Of course there was movies and dancing and ice cream and deck parties... so much fun on board the ship! We made plenty of friends, including the head of the dinning room. Too much fun to describe! Here are a few more pics...

                                                                Deck Party Dancing!

                                                      Watching Frozen on the big screen.