Skip to main content

Walking On Air



So we have been walking down memory lane with some dear friends of ours the other day, one of which happens to be a doctor at Leo's hospital, remembering all the drama of Leo's birth and the following terminal prognosis. Our doc friend was not there at that time, almost three years ago, but she since then has seen Leo's file opened several times for ethics seminars, lectures, etc. It was fascinating for us to hear Leo's story from the clinical perspective. In some ways, we never knew it was that bad. Well, we knew it was, but ignorance of the fine details is bliss. We didn't even know about Hydrocephalus until we heard the word for the first time in the ultrasound room. For a while now, I have been feeling compassion for the doctors who were on Leo's case. I can't begin to fathom what it must be like, to make diagnosis like his. To be the decider and then the messenger of such news! A painful existence, an exhausting and traumatic experience for parents, often resulting in the breaking apart of families; the ripple effect of a medically unstable child with major neurological problems is huge. I can forgive them for calling the shots they did, but only now, and only after seeing the story from their end. 
But now, the story from our end just keeps going. This is the official shout-out that Leo is walking! From a baby who was basically born with no brain whatsoever, no chance at life, (and at the time, they weren't wrong, not at least when faced with the slides of his noggin) Leo is now, officially,  a WALKING and talking miracle of love and hope.

Enjoy!



Comments

  1. elizabethApril 3, 2013 at 2:44 PM

    such a wonderful video! WAY TO GO LEO!!!

    ReplyDelete
  2. Elizabeth @ The Garden WindowApril 4, 2013 at 11:55 AM

    Beaming with delight at our special and precious Lion :-)

    ReplyDelete
  3. Janelle thegeekywifeApril 9, 2013 at 4:58 PM

    :) :) :)

    keep going, Agent L!

    ReplyDelete
  4. AnonymousApril 12, 2013 at 5:22 PM

    What a creative and amazing way to share the good news! Rock on, Agent Lionman!

    ReplyDelete

Post a Comment

Popular posts from this blog

With Mixed Feelings

So for the past couple weeks my feed has been filled with the "back to school" and "end of summer" and "beginning of parental freedom from their annoying offspring" photos. It's ok, I totally get it. Another year, another back to school pic, another notch in the door jamb, and another chapter of growth and development with junior. Look at him go! Or not, as the case may be for many children. According to the CDC (Centers for Disease control and Prevention) one in six children has one...a developmental disability. A stamp of "not normal" across their foreheads. A number. A check mark in a box. My kid is one of them. I heard a brief segment on NPR that enticingly started out with the title of developmental delays on the rise, a 17% increase over the last twelve years. And though I turned up the volume the segment only talked about how it's probably only due to poverty, and it's only the upper classes that actually pursue diagnosis...
34 comments
Read more

The Heart Knows

Today during the physical therapist's visit, Leo was put through his paces. She had a whole list of things, 40 to be exact, of regular newborn motor reflexes and characteristics. Each one gets a check-mark (or not) and then a total score once she tallies up all the information that she observed. Although the final score for Leo really itself doesn't matter, the test was more to establish a baseline of development for Leo, and to find his strengths and weaknesses. Once this baseline is established, it will be easier to tell any progression and growth. Just since her last visit, she observed that Leo was doing a much better job of keeping his head in mid-line position. Before he would always keep it on one side or the other. She also determined during the exam that Leo definitely tracked her with his eyes and responded to sound. More specifically, to my voice. She had him on his tummy facing away from us, and she shook a rattle and made some noise to see if he would move his head...
18 comments
Read more

Shunts Away!

Here is just a quick update for all those waiting and praying for our Leo, before we go collapse in bed for the night. Leo was prepped and ready for surgery early this morning, but they only took him around two in the afternoon. We were there with him for most of the day today, just waiting and biting our nails. The anesthesiologist, a very nice British guy, came up around lunch to talk to us about the risks etc in Leo's case. Apparently because of his tucked up little chin, the regular breathing tube could not be used without lots of maneuvering and fiber optic tools. The anesthesiologist decided to use another breathing aid that isn't normally used for babies; a little tube that only goes down into his larynx, and does not do much more then blow some air down. Most of the breathing support would have to come from Leo himself. Typically under anesthesia babies need help to breathe, so the anesthesia team takes over the breathing. However the side effect of that is the newborns...
17 comments
Read more