For those of you who have been praying for Manny: first of all, thank you!! We need to give you an update so that God gets the glory He is due in this.
Most of you know how Manny came to us, how we then adopted him and took on his medical challenges with resolve that he would not only survive, but be "normal" eventually. You were with us in your prayers as he often came close to flat lining. His breathing would stop; have heart problems; he would seem to have seizures; his systems would seem to shut down and we would often rush him to the emergency room to get him revived again. Back in May the doctors ran tests on Manny and determined that he likely had this fatal disease, and said he had only about 1-6 months left to live:
Leukodystrophy refers to a group of disorders characterized by progressive degeneration of the white matter of the brain. The leukodystrophies are caused by imperfect growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fibers. Myelin, from which the white matter of the brain takes its color, is a complex substance made up of at least ten different chemicals. Each of the leukodystrophies is the result of a defect in the gene that controls the production or metabolism of one (and only one) of the component molecules of myelin.
The word leukodystrophy comes from the Greek roots leuko, white, dys, lack of, and troph, growth. Thus leukodystrophy describes a set of diseases that affect the growth or maintenance of the white matter.
Thank God for the medical profession and giving doctors the technology to diagnose things like this/provide help. But how many of you understand that there are certain diseases that doctors can not fix? God has the final say so. The doctors told us to prepare for the end and just make the baby comfortable in the time he has remaining. Its over. And when they gave us this heart-breaking report, we understood that they were just doing their job. After receiving this diagnosis, you joined your faith with ours and we have all been praying that God intervene, even though we were bracing ourselves for whatever God might decide.
Well, let me say this carefully and as accurately as possible: Manny still has some major hurdles to overcome. He still eats through a tube in his tummy, still gets an oxygen tube while sleeping at night, still has episodes when he seems to stop breathing or chokes. His head, arms and legs still mostly hang limp.
But here is the praise report. He is making so much progress each day, and NOT going backwards like the diagnosis predicts, that we have gone back to the doctor, and with their agreement, had him removed from the "terminal" diagnosis. Now instead of making him comfortable until he dies, we are going down a different path of how do we help him improve. His feet and hands are showing more and more movement. His voice is getting stronger and with more words now. His head movements are strong as is his hand grip. His mind is getting sharper, and not regressing like it was supposed to. He was on Palliative care (meaning only make him comfortable) and now he is on Therapeutic care (meaning how can we make his life as best as possible). Beth says it like this, "Before we had to make plans for his death with funeral, DNR, etc. And now the doctors are making a Life Plan!"
So Yay God!!! Thank you Jesus!! Lord you are good, and your mercy endures forever!!
Again -- please continue to pray for Manny. He is a still a quadriplegic who eats through a feeding tube in his stomach and has serious trouble breathing at times. (He kept us up most of the night last night screaming out in pain, and we could not locate where the pain was coming from, for example.)
But Beth and I believe that we have turned a major corner here recently. The miracle here, again, is that he is no longer Terminal. This is a medical surprise...but not a faith surprise. We thought you needed to know. Some have been praying very consistently and hard for this little guy. We wanted to thank you [Manny thanks you too] and tell you that your prayers DID make a difference. And going forward, lets just come into agreement in faith for a total and complete healing. Thank you Jesus!
Dan Gore & Family