Three Little Engines: Just a couple of the professional photos

Monday, October 27, 2008

Just a couple of the professional photos

These are professional photos of Clayton, done at the hospital. They gave us a printed book.

Even with them lightening the photo, you can still see where the cord was wrapped so tightly around his leg.

Loving my gown in the photo. ;)

3 comments:

The Vegas Veenendaal's said...: Rachel,
These are beautiful pictures.... my heart still just aches for you guys. I hope that you are doing okay. I think about you often...
Love, Steph; November 3, 2008 at 12:08 AM
Erin said...: Don't worry about the gown... I didn't even notice. All I was thinking was "What a beautiful, heavenly family". You look perfect.; November 3, 2008 at 7:48 PM
Buzybugs pixie.blogspot.com said...: So beautiful, I got a little emotional looking at your precious baby! I am SO sorry for your loss, I am so amazed at what photographers can do. What a precious Angel. I hope you are doing ok, to say the least I know the struggles and pain your still going through and I know how many people out there have NO understanding. My heart is with you always. Take care!; November 22, 2008 at 8:08 PM

Okay, here's the thing:

For those who don't know already...

My oldest, Aidan, was diagnosed with a severe form of Epilepsy called Lennox-Gastaut Syndrome that is not treatable by the time he was 5yrs old. Then Jacen, with mild Cerebral Palsy w/seizure disorder, and Damon with Epilepsy. Later, after extensive testing, specialists said we are dealing with an untreatable neuro-degenerative genetic disorder that all three boys have. Genome sequencing results are still pending for mitochondrial forms that all testing and history points directly to. Heartbreakingly, Aidan passed away September 14, 2014.

All 3 have had varying degrees of developmental delays and regressions, but the same symptoms and in the same cycle. They are just at different stages of the disorder. The genome testing will hopefully provide an answer to the specific genetic markers causing all this so we can maybe, just maybe, make them a little more comfortable as they pass away. Jacen and Damon have now been diagnosed with LGS as well. And Jace is on Hospice. This is my journal.