We arrived in the early hours of Sunday morning and Tilly was a bit ill upon landing at Washington. A mixture of a long journey, missing her wonderful friends and the apprehension of what is to come I'm sure the main contributors. She burst into tears upon arrival and shouted 'But I am going to miss my friends so much', which given the days previous with them comes as no surprise as they were all a credit to their parents and Mountnessing School.

We picked up a hire vehicle at the airport that we had booked on-line but were hit with a number of additional costs that doubled the cost to over $1500 for 25 days!!! In addition, the amount of luggage and the wheelchair forced us to get a large SUV which although comfortable and familiar here, would look more like something of 'Monster Trucks' on SKYTV! Tilly underwent blood tests first thing this morning and was nil by mouth from last night much to her disgust! She was very distressed with the thought and action but was okay shortly after. The following appointments included pictures of her legs, torso and arms.

Tomorrow she will undergo ear, eye and physical movement tests followed by a meeting with the CINCA/NOMID expert, Dr Goldbach-Mansky. Later in the week she will undergo a 'Lumbar Puncture' (Not Nice), MRI Brain Scan and a meeting with the surgeon in Virginia, Dr Reign. Oliver is enjoying it at the Childrens Inn making friends with other childrenand particularly with another CINCA/NOMID sufferer, Issac, who like Tilly is adorable.

Early this morning I bumped into Alex Barton who also suffers from CINCA/NOMID and who I met several years ago whilst on business in Houston, Texas. It was a very emotional meeting as when I met him before I was missing Tilly a lot and he reminded me so much of her. We will meet his parents, John & Kate, tonight at the Inn. John & Kate are responsible for the creation of the first support website for CINCA/NOMID.

Got to go now as we are cooking dinner for Tilly & Oliver so thanks for reading this, the first of many Blogs to come over the next 6 months. Kind regards Colin, Debra, Oliver & Tilly