December 11, 2016
Our brother-in-law Brady is a College Basketball Coach. His focus is constantly on recruiting players to bring new skills, fill gaps and overall strengthen the team. It feels like we have now entered this world. However, we are looking for players for a ‘sport’ that no one around us has heard of. Donna, our contact with the HPS Network phrased it as “being in a dessert of information”. As daunting as this seemed at first, looking around we have some amazing individuals stepping up to the plate.
First, we have Dr. Lavigne, our pediatrician, who is stepping up to take the point on all things medical. She, like everyone else we have met so far, has never had any experience with Hermansky-Pudlak. After jumping into her own research and pulling from all the information we have obtained, Dr. Lavigne realized we needed someone to play point on the medical side of things to prevent us from floundering in that role on our own. We are so thankful.
Next up to the plate is our hematologist, Dr. Wang. Dr. Wang has prepared us with our medical response plan when it comes to the bleeding side of things. We are equipped with some heavy duty, emergency prescriptions to keep on hand at our house in case of trauma, something to assist during the time it takes us to get Tegan to the ER. Nothing to stress about there…right. Dr. Wang’s team is always on call to support trauma events as well as help plan the attack if there is a need for a scheduled surgery. We are so thankful.
We recently brought on a new member to our team, Dr. Kerby, our pulmonologist. We met with her last week to set up a monitoring plan for Tegan’s lungs. While the pulmonary fibrosis is not expected to appear for a couple decades, we are monitoring at an annual cadence to have a history of information for comparisons. We can also reach out for any respiratory concerns or illnesses we may encounter along the way. The goal is to keep Tegan’s lungs in as pristine condition as possible, including treating items which we might have just let them run their course otherwise. We are so thankful.
On the vision side of things, we have Dr. McCourt who is helping us monitor Tegan’s eye health. We see Dr. McCourt every six months to monitor the health of Tegan’s eyes and ensure his prescription is up-to-date. She is amazing and we are so thankful.
To round out our medical crew we will also be adding a GI specialist who can help us monitor Tegan’s health in this area with a plan of attack if things begin to worsen. We meet with a GI specialist from Children’s in January.
On the education side of things we have Sally, Tegan’s amazing vision and mobility teacher who thankfully will stay with him throughout his school years. Sally relentlessly pushes Tegan to advocate, take care of himself and grasp new concepts. She is currently introducing Tegan to braille to have as a toolkit in his back pocket to assist when his eyes fatigue. Overall, Sally’s goal is to have him master content early to prepare him for success as his vision adds additional challenges in accessing it. We couldn’t have selected a better advocate for him in this area. We are so thankful.
In addition to Sally in the classroom, we also have a swarm of teachers and therapists who love on Tegan and push him to be the best little man he can be. We also have the love and support of all of you, our family and friends. While this diagnosis has been heartbreaking and hard to grasp, it has made us take a moment to see truly how big Tegan’s village is. We are blown away by the love we feel. While there are many more tears to come, we also have hope…hope we will find a cure. Knowing that our ‘team’ has our back, we are preparing to join the fight to help find a cure.
Thank you. We are so thankful.
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