Changes

As you may be aware - Shaun experienced some changes during his stay at UVA. He had trouble keeping his airway protected so we decided the best way to help him would be a tracheostomy with modified Lindeman procedure. While in the PICU, he began to have increased movements - tremors - as well as a decreased ability to preform both fine and gross motor skills, and difficulty sleeping without the aid of medication.  A 48 hour EEG proved these were not seizures but couldn't be explained. All of these things were concerning and the doctors decided it was time to take a repeat MRI to see what was going on in Shaun's brain.

It was not good news.  The MRI results showed that Shaun brain has changed since the last MRI.  There was a 20% degeneration in his cerebellum and brain stem, as well as changes in his basal ganglia.  Since the cerebellum is the motor control center, Shaun's changes make sense with these results.  The brainstem also plays a role in motor and sensory function, as well as playing an important role in heart rate, breathing, eating, and sleeping.  Shaun's disease - though undiagnosed - is thought to be progressive and degenerative.  Therefore, if the degeneration continues in these areas, all of these things will be affected. 

 While we still believe that God can preform miracles, the science - and Shaun's body - shows that he is not going to "get better".  Therefore, we have had to make changes in Shaun's care.   Because of the progressive nature of this awful disease, Shaun is now on hospice.  Hospice for children is still end of life care, but it doesn't have the same 6 month timeline that it does for adults.  Shaun being on hospice allows him to get advanced medications and care at home instead of having to run to the hospital all of the time.  It also will help our family get through this time with music therapy, bereavement councilors, and legacy building.

Shaun also has a night nurse coming to care for him from 7p-7a each day.  His sleep cycle is not right  - and he is having a lot of trouble at night.  I am thankful that there is a medical professional in the house to help - so that I can get a little bit of rest at night... though I am torn, I want to spend every moment I can with my sweet, sweet son.

All of these changes have been really difficult for me... for our family.   We don't know how much longer we have with our special gift from God - each day I wonder if it will be the last.   I am trying not to focus on that though - and do what is needed each day to give love and care to Shaun as much as I can pour out.  He loves being home. He loves being around his brothers.  We all love him so, so very much.  

It is so hard to see Shaun struggle, to see him as just a piece as what he once was... and the only comfort we have in all of this is that it is not the end of the story.  In John 11:25-26, Jesus says, "I am the resurrection and the life.  The one who believes in me will live, even though he die; and whoever lives by believing in me will never die. Do you believe this?"

Yes. We do.