Tuesday, May 31, 2011

My Dearest Daughter

I had this notion that would keep up with daily updates, both for myself and for all of our supporters. As you know, it's been a few days since my last update and it was really better that I waited. I needed some time away to meditate, retreat, and regroup. However, if I had to sum up the last few days in one word, discord.

If you read through the majority of my writing you will generally see optimism, motivation, and high spirits. At my core, this is unchanged and not something that I find difficult to access - I never really have. What I would say about myself of late is that I find it somewhat difficult to reconcile patience with results. I am an incredibly patient person up until I reach a point where I think that reasonable actions should be rewarded in a timely and reasonable fashion. Each day the "five-year-old" in me says that Delaney is going to wake up tomorrow crying or engaging us in some normal way. So far, over the last month that we've been home I'm sad to say that has not happened. I don't even know if this is truly a reasonable expectation, the five-year-old doesn't care.

I guess what really triggered all of this is that we have been doing everything possible to my knowledge that is safe, healthy, and hopeful for Delaney and I would like to see greater strides. No one has a timeline that we can check. The only chart that has any relevance are the growth charts with our weekly checkups - she's way behind. To hear that she is in the 3rd percentile in weight for infants her age is somewhat disheartening. However her head is doing much better growing within the 75th-80th percentile and she's grown a little over an inch since she's been home. I just wish that there was a chart that would compare her to other infants who have suffered similar traumas so we had more relevance. It makes us feel somewhat adrift. Our expectations as parents for what we should be seeing in our little girl at this stage of her life is very skewed. We've had to throw out everything that we thought we knew about "what to expect". It doesn't change the love we have for her, or the efforts we will put into her development.

We have to have different expectations or it would multiply our disappointment. It does make us sad when we settle down and take the time realize the loss therein. We feel we are really good parents and we would love to be joining in on all the same milestones that our friends are celebrating. We do look forward to adding to the family one day and hope that we will be back on track in our own experience as parents. We hope that God will grace us with another opportunity to bring life into the world and hope that he sees fit to bring us a life that will be healthy. I think we've had enough parental "excitement" for a lifetime!

We have seen some good signs, but I don't want to gloss over the truth of the matter that she is really struggling. It's so painful to see that she can't just go through her day without something medical or clinical that needs to be done to keep her comfortable, breathing, seizure-free, and growing. Over the past five nights we have seen her get very agitated with a heart rate above 180 - one night reached 200 BPM. That was downright scary. My patience had truly reached it's limit in that I just couldn't figure out what we needed to do to help her. I was so mad, I was throwing things around the house! Finally, after we administered all the medication we could and didn't see a noticeable improvement we called our home care nurse and after talking things through we waited it out another ten minutes. The meds finally kicked in, her heart rate went back to normal, and she fell asleep. I think the defining characteristic of our frustration is that in so many ways, appearance being the main factor, she looks like a normal baby. Unfortunately, she has a symphony of complicated issues going on under the surface. If only her inner functions were inline with her outward appearance, what a beautiful masterpiece that would be!

Like I said, my optimism, motivation, and spirit are still strong. We are moving forward and tomorrow we will see a neurologist at the Michigan Institute for Neurological Disorders (MIND) clinic in Farmington. One thing that we never received was a very thorough explanation of the findings in the EEGs or MRI from Children's and we hope that bringing those reports with us we will be able to get a thorough explanation, and perhaps some notion of what to do next. There may be specific areas that we need to be focusing on in physical therapy that would help us to gain ground faster. If the doctors at this clinic can help us to keep moving forward, I think I will regain some momentum. I would really like another EEG to be done. She has improved in appearance and behavior since returning from the hospital, so there would have to be some improvement in the EEG. You can't have one without the other in my non-medical opinion. I don't know if the doctor will be administering that tomorrow, but we would like that done eventually. There is some debate as to whether this should be done sooner or later, but a month's time is an eternity for an infant. I would be very surprised if we didn't see some favorable gains.

I will be taking Delaney in for more Ki treatment at some point this week. We took her four times last week and she definitely responded to it. I've even learned a bit more about administering it myself. Last Thursday, Sensei was kind enough to give me a short lesson/demonstration. He can do amazing things with his energy. If you are attuned to Ki energy, you can't resist it. He actually demonstrated in front of me and our friend Nicki the power of Ki. His partner Patrick who is also a practitioner stood up and Sensei was able to control muscles from a few feet away. There he was standing and Sensei had his arms flexing no matter how hard he resisted. After a few amazing examples of this, he turned to me and said "same-a-same, but a gentle, gentle" as he gestured to Delaney who was quietly lying on the nearby mat. I spent a few minutes at that point administering some Ki treatments to Delaney myself. I could see that something was happening. If your Ki is flowing you will look down at your hands and your skin will be somewhat mottled, my brother Sean describes it as a pattern that resembles raw ground beef. He's right! I did try it at home and I'm not sure exactly what the difference is but all the energy I felt at the Dojo, was not the same as what I felt at home. Then again, I'm not a 60-something Japanese man who has been practicing his whole life and learned Aikido from it's founder. So, I give me a little slack. If you are interested in this practice, here is the link to Sensei's dojo. What I didn't realize is that Sensei was a part of a study of Ki and it's effect on water. Sensei was involved with Dr. Masaru Emoto, who's work was made relatively famous in the movie, "What The Bleep Do We Know?". You can read about that here as well.

What I have to say as I write finish this latest post, is that my dearest Daughter is waving her hands and looking around (sometimes at me). Making some gurgling noises along with the occasional high-pitched sigh. A gentle reminder that it's all worth it.

God Bless,
B & L & d

1 comment:

  1. I'm glad you found the inspiration to write again. I know from my own experience that writing can be very therapeutic. However, I'm also familiar with the pressure to write... something... anything... and those posts just feel forced, so I'm happy to hear you are only writing when you feel inspired. All three of you are constantly in our thoughts & prayers. Sending all our love & strength.


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