Monday, April 8, 2019

Monday, April 8, 2019

Tonight's picture was taken in April of 2003. It was during Mattie's first birthday party. This was a very overwhelming day for Mattie, as he did not get all the commotion, noise, and the people in our home. In fact, there were several meltdowns in which Mattie and I went upstairs to regroup. But Peter carried Mattie outside on our deck for cake, and Mattie was interested in his Elmo cake and sampling it. I remember taking this photo of my boys and I think it is absolutely adorable! 


Quote of the day: We understand death only after it has placed its hands on someone we love. ~ Anne L. de Stael


As I joked with Peter..... we are on the road again today. On Saturday we drove from Charleston back to DC. That was over 560 miles. Just to turn it around today and fly to Phoenix, Arizona. Which is close to a 5 hour flight. Needless to say, I got a lot done on the plane in preparation for tomorrow's focus group on the Standards and our 2 hour presentation on Wednesday morning. 

The Psychosocial Standards of Care were published in December of 2015. It produced an evidence based historic document that reviewed close to 1,300 studies. Basically we funded the most comprehensive pediatric psychosocial standards of care ever. However, this document is huge and too cumbersome for clinicians to actually use and implement. Which is why, the authors of the Standards have been working to create a checklist to outline the Standards and help treatment sites take their temperature (if you will), on how their site is implementing all 15 standards. The research team also created a companion set of Guidelines for each Standard, which will help treatment sites improve on the delivery of each Standard of Care. In any case, prior to the conference 20 social workers from around the Country had the opportunity to review the Matrix and Guidelines and tomorrow will provide us feedback. Obviously we want to create tools that clinicians can easily use and that they will find helpful so that psychosocial care can be optimally delivered to patients and families.  



Before I boarded the plane today, I checked in on my boy. Who will be in boarding for two weeks. Sunny is putting them through their paces as he is going on a hunger strike. I get daily updates about his LACK of eating, along with what Dogtopia is doing to encourage him to eat. They are just wonderful and they continually try to mix it up for him, so that this will peak his interest. I don't know if you can see Sunny, he is the tan and white dog closest to the cages. What is Sunny looking at? He has a direct shot at the door out of the room. 

Peter sat next to the window and snapped photos along the flight. This being a fly over of Kansas.

Moving onto New Mexico. How do you like these peaks with snow?

Finally landing in Phoenix. From the sky, Phoenix can look densely packed like Los Angeles, but as you get closer you see this is real desert. Including cactus and instead of grass and plantings, you see more rocks and dirt. 

The Phoenix basin or valley. Again this reminds me of Los Angeles, with the mountains in the far distance. 

This is the conference we are attending. When we arrived to the hotel today, our room wasn't ready. So we sat in the lobby, but we weren't alone for long. We met up with another advocacy group that is here and then had a pre-focus group meeting with our researchers/ clinicians. So it has been a full day, and tomorrow's focus group starts at 7am!