Lydon is our 19 month old caboose. He was born almost 6 weeks early in April 2009. He was taken to NICU and monitored for several days and then released. As soon as we took him home, we knew that he had trouble maintaining his temperature, trouble sucking and a very weak cry. He slept excessively, had trouble keeping his food down and didnt gain weight from the very beginning. I knew that something wasnt right but it wasnt until 5 months of age that he was admitted to Texas Childrens Hospital for 14 days for croup/stridor that wouldn't respond to treatment. That bought him a trip to the OR for some endoscopy. At that point, we learned that Lydon's reflux was quite severe and his upper airway narrowing was significant as well. Lydon continued over to next year to have some developemental delays, poor growth and weight gain and a very obvious energy deficit. His deteriorating GI issues and failure to grow and gain weight pushed us to look harder for answers as to why Lydon was not progressing. After some initial blood work with our pediatrician we were admitted to the hospital for some more extensive testing. That was this past Sept. 2010. We stayed 22 days that time. Lydon continues to have GI issues.He now has a GJ tube. He has sensory issues, speech delay, growth failure, respiratory problems, and balance/coordination problems as well as a significant energy deficit. Finally, in Dec 2010 we got back our results from Septembers muscle biopsy and testing. Lydon has a mitochondrial dysfunction. We are now in another phase of testing to not only identify the specifics of this disorder but to hopefully rule out any additional syndromes/disorders. Despite all of this, Lydon is a pretty happy and content toddler. He has his good days where he runs around, throws fits and even eats and drinks bits and pieces throughout the day. Then, he has his bad days where he doesnt eat at all except for his bottle or tube feedings, sleeps all day and seems pretty out of it and off balance when he is awake. We do our best to adjust our schedule to meet his needs. He has PT/OT/ or Speech therapy several times a week and is closely monitored by a variety of specialists in addition to a primary care team. We love Lydon so much and are so thankful for him. We believe that Lydon is special and God has a specific plan and purpose for his life and for ours as well. Please pray that we as parents will continue to have the strength to clearly see and accept the path that God has layed out for Lydons life.
