UVA again....

 Shaun was having a hard time keeping his sats up again... I called in the hospice nurse at request of our home nurse and she came, listened to him, heard that his lungs were full, watched how he was acting and determined he needed intervention or to be comfortable. I chose intervention especially since Peter was out of town.  We packed up all our stuff and headed to Loudoun ER because they have a pediatric ER. After a chest x-ray showing there was no pneumonia, they decided to call the on-call pulmonologist who said we had another choice to make. We could start Shaun on a rate (ventilator breathing for him) or come and get further testing. I didn't think he just needed a rate so I chose to make the trip again via ambulance to UVA. On the way down there, Shaun had a hard time breathing, so much so that he whipped himself around enough to pull out his trach. When this happened, gobs of goop, mucus or infection- not sure which, came pouring out of his trach site. It was mucus plugs that were the size of half dollars. He couldn't pass them through the trach and I couldn't suction them out. Once that happened he was a different kid! We got to UVA and they "observed" him for 2 days making sure he didn't have apnea needing to be on a rate and then we were sent home the same as we arrived! Praise the Lord!

Nurse Jennifer with Shaun

 Jim and Peter were in Mexico enjoying a "man-cation"on the company because Peter did an excellent job last year, so Becca and I decided to have our own "south of the border" party in the hospital. We were with our guys in spirit!

 Shaun really enjoyed Becca reading to him once he started feeling better

 I learned this trip that a special program, the 0-2 year old education program at UVA will be sequestered because it isn't protected by Special Education laws. The current law states that 2-21 will receive education. This is a travesty because this program has done so much for so many children. Chelsea, the teacher has been instrumental in helping me learn the best ways to engage and teach Shaun. He loves her! and so do I! Thank you, Chelsea, for all you do with Shaun.  Here is a letter I sent trying to change the minds of our officials and I  request if it is laid on your heart, send it in to anyone who will listen. If we flood their mailbox, they will have to listen.

Governor McDonnell, Senator Kane, Senator Warner, Attorney General Cuccinelli, Delegate May, Delegate Minchew:

I request your help and intervention to save a vital education program offered in Virginia hospitals. I was alarmed to learn this weekend, that a program my son and family depend on at UVA is being sequestered. A source told me education programs offered to ages 0 to 2 at hospitals across Virginia are being cut on July 1, 2013. There is no good reason for this cut. I hope you agree, all of our children deserve the best education we can offer them, even the special needs kids and especially those with special needs in hospitals.
These programs are more than an education program. These programs and teams of professionals help ease our children’s pain and suffering; help in their healing process; offer physical and mental therapy; help improve where there are developmental delays in speech and language; help with disabilities; and help prevent the need for other costly intervention in the future. Family members and supporting communities attending the program also become more aware of the gifts and abilities of their children and learn techniques to carry home.
Scientist, doctors, teachers and parents can show definitive proof that babies 0-2 years old undergo a whole range of physical, social and cognitive developments to acquire new motor skills and language abilities. Unfortunately, our special needs children spend most of their time in the hospital, so this is the only time for them to receive this training. I have seen the difference it makes in my son’s health and life, particularly before and after surgeries or painful procedures. These programs help make him stronger and more aware as well as happier and healthier.
It is crucial we keep offering education to babies and toddler at our hospitals. If these programs are allowed to discontinue, it is a clear act of age discrimination committed against our own children; and cutting these programs hurt our children. Please help us give a voice to babies who are too young to speak for themselves. Do the right thing. Protect the education programs in hospitals for 0-2 year olds now!
Respectfully request you to take a position to help the voiceless.

 Our girl slumber party!

Nurse Allison with Shaun

The nursing staff at UVA is wonderful. I have nothing but good things to say about most of these women. We usually get nurses that we have seen before and they love Shaun. Its great to know Shaun will receive such good care with people who love him if and when we have to go there. Thank you to all who help make such bad times a little better.

We are once again home and doing well. Thank you all for your prayers. Shaun's our little fighter!