Wednesday, November 7, 2012
It's amazing how fast time gets away from you. It seems like yesterday I posted on here when actually it's been over a year! On October 29th Kayden turned 2 it's hard to believe its been two years already! Wow a ton has happened last time I posted Kayden was starting to wean off the vent in December he was admitted for 3 days for close monitoring and a sleep study so he could get completely off the vent! Almost a whole year with no vent! We then began to cap his trach where he was breathing out of his mouth and nose to see if he could get his trach out. Well July 6th he went for surgery to take his trach out. He has now been 4 months with no trach!!! Since July he has been undergoing some genetic testing because he has malignant hyperthermia they were trying to figure out the source from it and he has been diagnosed with central core disease it's a very rare neuromuscular disease. Next week he will actually have surgery on November 16th to have a muscle biopsy to see the extent of the central core disease, to close his hole where is trach was, and to bring down his testicles. He will be admitted atleast one night and were praying only one night. It's so amazing how God works. The drs thought Kayden wouldn't be to this point of his journey until he was 4 or 5. Today he is so happy and so very very strong willed. If you did not know him no one would ever guess he had spent the first 6 months of his life in the hospital and had been completely ventilator dependent almost the entire first year of his life. Thank you all for all your prayers throughout our entire journey we have definitely felt them and keep them coming we are not done yet. At the end of the month Kayden will be going to Dallas for intense feeding therapy so he can learn to eat and in hopes to get atleast 50% off his feeding tube by the end of the 5 week program kayden is very very stubborn and has become very reliable on his feeding tube that this will be a journey in itself so keep us in your prayers!!!!