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Michael's Page

Volusia 2017

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Raised: $1,250.00

Goal: $200.00

My Great Strides Story

  • The Team Captain

Tobin has grown and changed a lot since the last Great Strides walk!

He is a very happy, silly, energetic 2½-year-old boy with a great sense of humor. He loves his sister, trains and anything having to do with Star Wars.

This year, we have been working with Tobin to involve him in his therapy to help him start to take ownership of his health. He is now able to buckle himself into his Vest, plug everything in, and is able to hold his own nebulizer during his inhaled treatments. He can also feed himself many of his oral medications (with the help of an adult who gives him the proper measurements). He has his days, but overall, he continues to take his therapies in stride.

BREATHING & LUNG HEALTH

We are happy to say that Tobin had no hospital stays in the past year and has been very healthy overall, despite the occasional cold or minor respiratory illness. Tobin continues to test positive for MRSA (methicillin-resistant Staphylococcus aureus) in his lungs. Despite this, Tobin has continued to remain stable and does not show any signs of issues.

GROWTH & DIGESTIVE HEALTH

Tobin continues to grow well, both in height and weight. We continue to give him high calorie snacks, meals and nutrition shakes to help him gain and maintain. He has become more picky about his foods this year, so it’s a little more tricky to find new ways to hide calories. We are always looking for new recipes!!!

THERAPIES & TREATMENTS

Tobin undergoes a myriad of different therapies to address the symptoms of cystic fibrosis. The following is a list of daily treatments when he is healthy.

Breathing/lung treatments: Two 20-minute sessions of chest physical therapy (The Vest), Pulmozyme and budesonide (medications taken via nebulizer), and sometimes albuterol.

Growth/digestion treatments: Pancreatic enzymes (Zenpep) before every meal or snack, specially formulated CF vitamins (Aquadeks), vitamin D supplements, increased salt intake, nutrition shakes, Ranitidine and Ursodiol.

ALWAYS PUSHING TO FIND THE CURE!

We have been very blessed by Tobin’s overall good health this past year, but realize that not one "healthy" day can be taken for granted and not one moment can be wasted when it comes to finding the cure.

Again, we would like to thank all of our friends, family and co-workers who are literally and figuratively walking beside us on this journey to find the cure. We are so blessed to be surrounded by your love, support, and prayers! We have been blown away by the generosity and kindness of those in our support circle. All of this love gives our family great encouragement and words truly aren't enough to express our gratitude.

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