New Medication

Sorry for the delay in updating the BLOG. Once again to make a long story short....Kylee was originally scheduled to recieve the new medication tomorrow (23rd of June). The drug company denied Kylee being in the study as of June 9th. She passed all the requirements except the fact that she is fed through a tube. We informed them that she could stop the tube feedings and survive on regualr food for the 21 days they require. Unfortunatly they had already cancellled all her appointments. She will start the 3 week process of getting in the study again on the 1st of July. If all goes as planned she will receive the new med on the 27th of July. During her appointment on the 2nd of June they kept using the worked remission. We are sooo hopeful.