Follow twins Christian and Thomas as they explore, navigate, learn, and overcome obstacles in a world not made for those with a disability. Christian was 1 # 0.9oz and 11in long. They were born because Christian got an infection in his amniotic sack during a routine ultrasound to check my cervix for funneling. They had IUGR in the womb, which made them very small for their gestational age. They are called micro preemies. They were given a grim outlook at 2% chance of survival. Thomas has had many struggles and set backs since birth. Surgeries Thomas has had are, PDA ligation (heart surgery), bilateral groin hernia repair, tracheotomy, gastric tube placement , 4 bronch scopes, 2 lungs flushes, and tonsil/adenoid removal. Since birth Thomas has been a fighter! Thomas never had any brain bleeds!! He has fought a very hard battle, and still is. Thomas coded in March of 2013 where his heart stopped for 2mins, and was oxygen deprived for almost 4 mins. He was very sick for weeks after this happened but God pulled him through. We didn't know how this would affect his brain but he is doing great. We don't fore see any long term problems in the future, except his current diagnosis of sensory processing disorder. He has had many infections and currently has MRSA, Staph, and psudemondas in his trach and nares. He has to be on a mechanical ventilator to breath (life support), and gets fed through a gastric tube in his stomach. He has a tracheotomy, high blood pressure, gerd/reflux, reactive airway disease, respiratory distress syndrome, premature emphysema, bronco-pulmonary dysplasia, chronic lung disease, chronic heart disease, retinopathy of prematurity, t-cell deficiency, nephrocalcinosis of his kidneys and suspected Primary Hyperoxauulria type 1. He currently takes 8 medications and 2 inhaled medications. Thomas currently walks with a walker, and walks holding on to a hand. He cannot talk due to his trach, but is learning sign language. Thomas came home on November 7th 2013. He was med flighted back to children's 28 hours later for pneumonia, bleeding/clots in his lungs and stomach. He came home again on November 14th 2013. After 320 days (11 months) in the hospital Thomas finally came home to stay. He is working towards getting off the ventilator and is currently doing trach collar and HME on 1 liter of oxygen during the day. Christian came home from the hospital in May of 2013 after 130 days in the nicu. He came home with oxygen and a pulse ox monitor. He was 're admitted to the hospital 2 days later for severe reflux and turning blue. He had lost 7oz in 2 days. He came home four days later and we went to stay in Milwaukee 2 weeks later with Thomas. Christian had bilateral grade 1-2 brain bleeds that resolved on their own. He has reflux/Gerd, chronic lung disease, failure to thrive, esinophilic esophagitis disease, silent aspiration, severe milk protein allergy, oral aversion, sensory processing disorder, resolved retinopathy of prematurity, amblyopia, a gastric tube to feed him, nephrocalsinosis of his kidneys, kidney stones, gall stones and Primary Hyperoxaluria. Christian is on 5 medications currently and has been taken off oxygen! He only needs it while sick and after surgery. We are currently fighting to get Christian's EOE under control, he has had two kidney surgeries and 8 gastric scopes with Biopsies. Christian does not yet walk, but he stands holding on, he is learning sign language and can say some words. Both boys are developmentally and physically behind, but are reaching milestones. They see pt/ot/speech once a week and also see several specialists. Christian attends feeding therapy in Milwaukee, and they will both start therapies at Little Chute Elementary in January. Currently both boys are having diagnostic testing done for Primary Hyperoxaluira. This disease is not well known, and only 1 in 3 Million have it, they are suspected to have type 1 but we are waiting on confirmation. The only cure is a liver transplant. We are hoping that the results are in our favor.. we could really use it, but realistically, we need to prepare for possible renal failure and liver transplants on both boys. Christian and I lived at the Ronald McDonald House in Milwaukee from June 2013 until November 2013. Randy drove down every weekend to see us. Currently Randy attends Fox valley technical College full time to get his Associates degree in Diesel technology, as well as works at Quality truck in Appleton. I am not working at this time as it takes an army to care for Thomas and Christian, they have several doctors appointments and therapies that need to be attended, Thomas receives 20 hours a day of nursing care and needs two trained care givers with him at all times to remain safely at home. Will you please share Thomas and Christian's story and help with your prayers?!! THEIR STORY YOUTUBE VIDEOS
Part 1
http://youtu.be/Jv2J3MEdXc8
Part2
http://youtu.be/GdjLo_wQdMk
They have beaten the odds and we couldn't be more proud. Thank you all for your support and prayers. Thomas and Christian have a long road ahead of them but we know they can do it. Check the page often for more updates!!
