Saturday, August 11, 2012

"I am so sorry to tell you this news." Dr. Amato

This will not be a pleasant post to read. I am raw with emotion tonight as I update this blog. I am desperately trying to hold it together and be strong, but Ryder is dying. No more hope for a cure, no longer the fantasy that I'm exaggerating his condition, or dreams of watching Ryder progress through the years.
I don't feel like going into details to much, but the quick version is: It's been confirmed that Ryder has Alpers syndrome:" a serious, fatal mitochondrial disease." His brain cells are quickly dying off. He's losing body functions. He will lose all his senses. His stomach doesn't empty, his bladder and bowels don't function appropriately, he's losing vision, his heart rate is tachycardic (too high), his breathing is abnormal and has ceased altogether at times. Seizures are very complicated to control and often ongoing. He’s becoming spastic and ridged. He screams out and whimpers, even while sleeping. The doctor said it's not pain, but it seems like it to us. Ryder is dying. On our agenda ASAP: Get Ryder baptized/Early birthday party at the same time? (Thinking the Ryan House for both, but will ask tomorrow.) Rush-A-Wish (make-a wish foundation) Speak with case manager/hospice team on how to tell his brothers. (Thankfully they are at the Claytons this weekend when we got the news & can process it.) We want Ryder at home and/or the Ryan House (hospice) for comfort and end of life care with people we know and love in a comforting environment instead of the hospital. Tons of family photos (any professional or amateur photographers are more than appreciated at all times for unposed moments or planned. (Best to contact Jen or my Mom-Mary for where we are.) ...start plans for a celebration of life. We don't want a traditional funeral. We want a beautiful celebration with colors, music, memories-surrounded by people who loved and were touched by Ryder's life. This is our wish and hope, but when the time comes, it may be too much to plan. Ryder's fundraiser is coming up at the end of September. Our hope was to purchase a wheelchair accessible vehicle so I can take Ryder to the zoo, park and on memorable outings. It doesn't seem like this will be an option anymore. We most likely will use this money for funeral/end of life celebration. Can you believe I just had to write that? GOD please give us the strength for this. I want to go to bed--forever--and never wake up until my baby is healthy and running around driving me crazy like any 2 year old would be doing. But I know I have two other BEAUTIFUL boys to raise. I have a purpose here on Earth that I need to fill. Ryder has taught me more in his lifetime than I've learned in mine. I just wish I could have had a more important role and outlive my baby.... P.S. notes: Family and friends wishing to see Ryder before he leaves us, we are more than willing and grateful for your visits and support. Let us know when you'd like to come. Also, please be flexible as to how he is feeling that day and our family situation at that time. I will keep you informed to his baptism/birthday party day--but expect it to be very soon. I think our Make-A-Wish trip will be from August 20th-27th, but it is not confirmed. Please bare with our emotional rollercoaster at this time and know we love you and are grateful for your support, even if we can't write thank you's or comments on your post (we do read and appreciate them though).