Swim, Bike, Run and $ for IronBlake

My name is Ashley and my husband is Josh. Our great little cousin Blake battles everyday of his life to stay healthy, stay out of the hospital and provide his body with the nutrients he needs to grow. Not only is it hard on Blake, but also hard on his amazing parents, Kirk and Breanne. My husband is entering himself in the Santa Cruz Ironman triathlon, September 10, 2017, in honor of Blake. For everything that Blake has gone through, Josh is willing to endure the pain for just a short period of time to help Blake and his parents with the everyday struggle to keep up with medical bills. Our first born, was born with a disability and had to have multiple surgeries. We know first hand how difficult it can become not only emotionally but financially. Please read the story below and find out a little more about Blake and his condition.This is Blakes story....Blake was born on September 2nd 2014. He was a healthy baby through pregnancy up until birth. Blake was born at 4:04 pm and late that same night while the nurse was doing her rounds she discovered Blakes temperature was low. He was colder than he should be. Additional nurses came in to help our nurse asses him and then rushed him off to the NICU at Memorial Hermann in The Woodlands Texas. Blake stayed in the NICU for about a week. He was on a feeding tube and wrapped in blankets to keep him warm. He was also put in a Billy Blanket to help fight off his Jaundice. His blood sugar levels were checked often. Once he seemed to be doing better he would have to practice eating without the feeding tube. He was a lazy eater and took some time. All was well after a week and we were finally sent home. Blake was doing well his first year of life. He was better at eating, he was happy and always smiling and laughing. We thought the worst part of his life was behind us. It wasn't until the early morning of November 20th that his health took a turn for the worse. Blake was sleeping next to us in our bed and I felt he was really sweaty. He was in warm pajamas so I took them off to try and cool him down. He began screaming as if he was having a bad dream. I had never heard this from him before. At this point he was 14 months old. I started to calm him and googling "can babies have nightmares?". I picked him up and held him. At this time his eyes were closed but he was still crying and making yelling noises. I leaned him back from resting on my chest and his eyes were now wide open, he was unresponsive and his mouth closed with tight lips. Something was majorly wrong. My husband called 911 and we had to let the dispatcher know every time we felt him breath. The paramedics came in to our home and put him on a gurney. One of the first things they checked was his blood sugar. They asked if he had diabetes because his blood sugar was so low it wasn't even reading on the monitor. The lowest the monitor can read is a 20. (Today Blakes normal blood sugars are 80 - 120 and anything below 70 is in the danger zone.) The paramedics hooked him up to an IV of Saline and Glucose to raise his sugar. Within 30 minutes or so Blake became 'normal' again. We were taken to the ER where they ran tests and then decided to send us to Texas Childrens Hospital in Katy, Texas. We stayed at the hospital for about a week. The Dr.s ran tests and we met with different Endocrinologists. They decided to do an MRI - this is when they found that Blakes Petuitary Gland was not completely formed and was causing a shortage of hormones in his body. They diagnosed Blake with Adrenal Insufficiency. The Petuitary Gland sends signals to other endocrine glands such as the Adrenal Gland which makes cortisol. Our body needs cortisol when we are stressed or our bodies are in stress due to injury or illness. Blakes Petuitary Gland does not do this, so his body does not know it needs to make cortisol. Therefore, during stress or illness his body will 'crash' and cause his blood sugar to dip into dangerous levels. Blake now takes a pill form of Cortisol two time per day. When he is sick or does not have a good meal then we 'stress dose' by giving him additional Cortisol pills. Due to his Petuitary Gland not being formed he also has low Thyroid levels. He takes medication for this as well. We check Blakes blood surgar levels before bed and at 6am every morning. This helps us to monitor if he needs another snack before bed or if he needs to quickly wake up and have medicine along with food to boost his sugar level again. Throughout Blakes first year of being diagnosed with Adrenal Insufficiency we have had 4-5 more ER visits and another Texas Childrens Hospital stay. These have all been due to low blood sugar or illness. If Blake breaks a bone or throws up we have to give him a intramuscular shot into his thigh with a liquid form of the Cortisol. This gets the medication into his blood quicker than the pill form. When we do this we have to immediately rush him to the ER. We have had two experiences with this. When Blake was first diagnosed with Adrenal Insuficiency we had a short term medical insurance plan. So they covered a good part of our first ER and hospital stay. That plan ended in December so every hospital visit after that was all self pay. We still had that insurance plan but since it renewed in January it was considered a 'new plan' and now Blake had a 'Pre-existing Condition' that they would no longer cover. We have better insurance this year but are struggling to pay off close to $20 thousand in medical bills.Everyday is a struggle. Getting our two and half year old to eat is a challenge. We cant send him off to bed hungry, we have to push through and give in to what he 'wants' to eat. Taking his medications is easy. He is a champ when it comes to that. The past year or so we have also been giving him a shot of growth hormone every night before bed. This helps with his growth factor as well as preventing low blood sugar crashes. Right now we are thankful we get this medication at no cost. This is due to our income level and the fact that our previous insurance did not cover medications. The normal price for his Growth Hormone is $50 thousand per year. Blake will have to take his medications for the rest of this life. The Growth Hormone may only be through puberty but it could be longer. His disease does not define who he is. He is so smart, funny, loving and so BRAVE! His nurses are always so impressed by how well he does with shots, having blood taken etc. We visit our Endocrinologist every 3-4 months. She is so impressed with his growth and maturity. He is on track with all milestones and speech. We just take this day to day and do our best to keep Blake healthy. Adrenal Insufficiency is a chronic disease and can be life threatening if not treated.Thank you so much for supporting us. We wish your families good health.The Clugston Family,Kirk, Breanne and Blake