Delaney Update: 5/14

We continue to adjust to this "new normal" in our lives and while I would say we have been incredibly optimistic it really isn't an easy thing to maintain 100% of the time. All of the advice in the world tells us to live in the moment. Just think about "what is" and not too much about what was, what should be, or what will be.

In our lives, there isn't anyone who can tell us what to expect in Delaney's development...not with any real precision. No one has a crystal ball. We will put ourselves in contact with those who will have the best chance of effectively evaluating Delaney's progress in many key areas. We hope and pray that those experts will be able to give us the best of outlooks. It's just difficult when we realize how long of a road lies ahead of us, with so much uncertainty. However, the only option in my mind is to remain positive. There is too much that we don't know to choose to do nothing else but keep on moving forward. Or just keep on swimming...

I know that many people faced with what we are dealing with would feel they have all kinds of excuses to curl up in a ball and give up, give in. It's just not how we operate. So we move forward. I do get overwhelmed if I think too much about everything that needs to happen medically. There are so many appointments and specialists, a lot of milestones ahead that we need to get on the calendar. So much to manage, so it's important to focus on 'the next thing'.

Monday, we meet back with Dr. Doshi. We are excited to hear what he has to say about the x-rays and hopefully what needs to happen to get us closer to weaning Delaney off of the O2. She's been doing reasonably well with her breathing this week, with some occasional "fits" which required the all too familiar suctioning. We are hoping to also get a handle on this mucous that she seems to have an endless supply. It would help all of us to sleep through the night without worrying about her airways. I will say that she has improved in that we have been able to go as long as four hours at a stretch without suctioning. This took a bit of a backslide over the last two days, where we had to be very careful. In one instance I was really in a panic with how red she got in the face and how much it reminds me of the night she was in crisis and I was so helpless. I am at least thankful that I have the means to give her relief from her breathing troubles.

This coming week we also have to get back to see the Cardiologist to keep tabs on the Coarc and other defects that we hope are reasonably in check. We know that she has to keep gaining weight in order to be in better position for surgery, and while I know that she ultimately needs it, it scares us to death that she has to go through something so extreme. We want what's best for her and she has so much healing to do already that it's hard to believe that she has more in store. Yet we trust Dr. Sommerfield and know that she has the same hope as we do for her full recovery.

In other news, we have set an appointment for a Feldenkrais therapist to evaluate Delaney on Tuesday. We are really excited to see what she has to say about a treatment plan. Everything that we have read and learned about it makes us feel that she should really respond well. To think that through these treatments we may be able to repair those neural connections in her brain means so much. Not to mention Reiki and Ki treatments, which have been nothing short of amazing. We are so hopeful that we can overcome this grimmest of prognoses thus far. We feel thrilled about the progress she's made with simply the love, attention, and prayers we've been able to give her at home and through our family and friends.

Thank you for keeping up with the course of events, and sorry for the short time-out the other day when Blogger was offline. I will try to keep up with updates, I don't want you guys worrying! :-)

Love,

B & L & d