Today was a hard day for me emotionally. I have struggled in the past 24 hours not to let my feet leave the ground as I see how much more comfortable Ryan is. I keep having to remind myself that even though he coos and smiles at us, he is still sick. Today, I told Chris "we need to fight for him". I am somewhere between that denial and anger part of the grieving process. It is as if in the beginning, when he was very sick, it was easier to accept the news we were given about his prognosis. But now that Ryan has again become the baby we knew at home, it is harder to imagine that anything that we are being told is true. That is, until I look at him... and I see the tubes in his nose for food and oxygen, I see his little chest working so hard to provide his body with the oxygen it needs and I hold his weak body in my arms. Then, I begin the grieving process all over again... It is like we've been tricked in a way. And, all of these feelings to have to digest in a short week is just so much to take in. That is also without addressing our other worries, Charlotte and missing her, coming home with Ryan and organizing our lives, our jobs and taking care of eachother's needs. To put any of our feelings in words seems an impossible task. We have been flooded with emotion the past few days that we have become somewhat numb. It would be easier to disconnect from all that is happening to us, but we do not have that option and need to be strong for eachother and our children.
So, as I said to Chris that we need to "fight for Ryan" I began doing what anyone does when they are sick. For the first time, I searched the internet for ANYTHING I could find about neurodegenerative disorders in infants. After discovering many long named disorders, we agreed that we needed to have another conversation with our neurologist. We do have a few options for Ryan, most of which involve more tests and possibly more doctors to provide more input. He explained that many of the neurodegenerative disorders that you will find "treatment options" for out there are different than what Ryan has. Those are disorders in which a chemical imbalance or and exact cause has been discovered. There were some treated with bone marrow transplant and something called Lorenzo's Oil, and a few others that had other treatment options. But, these treatments are not cures. They only prolong the lives of those who have them. That is the reality. After digesting our options, we did decide on one thing for now. A few days ago, we were trying to collect blood for genetic testing for Ryan. After 3 unsuccessful arterial sticks, we told them to stop. At the time, Ryan was very sick and it seemed as if the testing wouldn't be helpful to us anyway so why put him through that. But now that Ryan has recovered from his fever and is more stable, we do feel that the testing will provide us with either piece of mind or hopefully some type of answer or guidance in how we should approach his care. So, a blood test is not an aggressive step, but something we feel we must know. we would probably always wonder if we did the right thing if we didn't at least check his genetics. He may be like Charlotte in that the testing may be inconclusive and not help us define his disease, but at least we would know that. And knowing will hopefully help us deal with what is before us and help us feel we are making the right decisions and someday find closure to this burning question "What if there is treatment or a cure?" Even though it isn't likely, we need to try to help him, we need to feel like we are fighting for him. We am not ready to give up. That doesn't mean we are going to put Ryan through a battery of tests at some research institute, it just means we are going to start here...
We continue to be amazed by all of the support we are receiving, from friends, family and people we have known only a short while. Today, we were given meals from Tri-Ko, people who work with my mother, 2 meals from my co-workers in Perinatal Lab, the Teacher's from Ryan's class when he was at Good Shepherd School the 2 weeks I had returned back to work and had leftovers from a wonderful meal prepared by Charlotte's Physical Therapists husband. And we have been offered so much more help than that. I do believe that as we approach and coordinate Ryan coming home that we will begin a "care calendar" so that others know what we need most. It is difficult to know what those needs are going to be right now since we are so focused on getting through each day. We will let you all know how to help us and please know that just offering means so much.