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Hello all, This is Ben Medina, the father of Brooklyn and Isabelle Medina (the girls you’ve been so diligently praying for with Cystic Fibrosis). I wanted to give you an update on them. We are just now beginning to get in to some sort of routine. There are daily treatments involved in treating the disease. First we wake up and give both of the girls breathing treatments (done with a nebulizer and albuterol). Getting a 4 month old and a 2 year old to sit still through them is tedious to say the least. The breathing treatments can/should be done up to four times a day depending on their congestion. Next we must administer enzyme therapy before every meal. Cystic Fibrosis causes thick mucus to build up in the body’s entire digestive tract causing them to not absorb the food’s nutrients. The enzymes help to break down the mucus so the nutrients can be absorbed slightly more. After the enzymes are submitted, we have to feed them high calorie diets with every meal in hopes that they will gain weight. The last of the daily routines/procedures is chest percussions. We have to beat there chest with a medical device (similar to a rubber cup) to help break up the mucus in their lungs. This is done up to four times a day for 30 minutes at a time. There is a vest that Isabelle can wear since she is big enough for it that will do the chest percussions for us, but it costs $16,000. This will probably be needed more for Brooklyn (5 months) when she is old enough to wear it because her form of CF is FAR MORE SEVERE. Today we take Brooklyn (5 months old) in for surgery. She has some sort of a deformity in her esophagus causing her to choke and even stop breathing for periods of time. This is apparently a common problem in newborns (sometimes referred to as a floppy esophagus), but due to the CF… this condition is extremely critical and worsened by the thick mucus and weak lungs that CF produces. Now this brings us to where we are today. Are days are filled with routines, treatments, illness, yet a strong appreciation of life. The path we must walk is tough, but our God is tougher. Though are daughters are weak, our family has become stronger. Are church families have been amazing, (Experience Life and LifeChurch). We are firm believers that God would not give us more than we can handle, and his will for each of our family members is slowly becoming more defined. Keep us in your prayers. Pray for wisdom, strength, rest, and peace. We appreciate our extended family in Christ. Thank you all for you concerns and more importantly your prayers.
We have decide to start a team (Team Medina Cysters) to help in an effort to raise as much funds as possible to be donated to the Cystic Fibrosis Foundation. We will be walking on May 15th, 2010 at Lubbock Christian University.
Great Strides: Taking Steps to Cure Cystic Fibrosis is the Cystic Fibrosis Foundation's largest national fundraising event. Tens of thousands of co-workers, friends and family come together each year as one community for one cause…to help find a cure for CF. In 2009, nearly $35 million was raised to support vital CF programs.
We ask for any donation you can offer to support us as we walk to "Take Steps to Cure Cystic Fibrosis". There is no cure for this life-threatening disease, but our hope is that collectively offering our support, we may find a cure for BOTH of our daughters in the near future.
Sincerely,
The Medina Family
Walk Site: 2010 Lubbock - Lubbock Christian University Date: May 15, 2010 Time: 8:30 AM Chapter: Northeast Texas Chapter
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