Skip to main content

deconstructive vs. reconstructive

On Reconstructive...
It's been a good Leo day!  We took him to see the neurosurgeon today and he continues to impress his lovely personality on the doctors and nurses who this time were poking their heads to see the little man.  The purpose was to discuss how to "fix" the shape of Leo's head.  The suture lines of his scull are very prominent because of how stretched his plates were at the time of his birth.  There is a surgery to fix his head.  This doctor has the power to create, literally to sculpt, babies heads!  How many of us can say this is part of our portfolio?  This is very intense surgery and today we learned more about what is happening in that field.  Amazing stuff.  We will not be doing anything "reconstructive" on Leo until he is at least a year old.  If he continues to thrive as he is doing now...gaining weight, body tone, and cognitive abilities, it may be a viable option for us at the time.  For us "reconstructive" means trying to manage the shape of his head as he grows into it so he can gain back the one thing he is lacking developmentally which is head control. 

On Deconstructive...
The doctors said that his brain development in the womb was a "deconstructive process".  Here we are five months later and we are ordering neck braces, helmet's (to begin to reshape his head), and talking reconstructive surgery!  Of course all of it hinges on his development in the next six months.  His brain tissue notwithstanding any move from deconstructive to reconstructive is a victory for Leo because then I believe we are aiming at his continued growth for however long his journey is.             

Anyway, you get the point of my muse.  We are hopeful that by aiming at this reconstructive process, in whatever form it will take, it will follow Leo's lead that he has set brilliantly so far. 
Peace.
Enjoy the pictures!




Comments

  1. Calories and CoffeeJanuary 19, 2011 at 10:54 AM

    I'm so glad things continue to go well! And he is absolutely adorable!!

    ReplyDelete
  2. MannaJanuary 19, 2011 at 8:48 PM

    Thank you so much for letting us share a bit of your life with Leo. The pictures are always such a joy to see. Love and prayers to everyone.

    ReplyDelete
  3. AnonymousJanuary 20, 2011 at 8:04 AM

    You have such a beautiful son. I usually don't compliment babies online, but here goes. :]

    ReplyDelete
  4. NickiJanuary 21, 2011 at 9:55 AM

    He is so precious. Thank you so much for sharing all of this with all of us! OUr continued prayers and support are with you!

    ReplyDelete
  5. The Pen of a Ready ScribeJanuary 21, 2011 at 5:38 PM

    It's his eyes and his smile - I just grin from ear to ear when I see him ! You are SO blessed. And Nika is just as beautiful :)

    ReplyDelete
  6. shirlgirlJanuary 22, 2011 at 10:20 AM

    Leo is getting to be so cute. I hope all goes well for all of you and the hard decisions you have to make. He certainly is a gentle spirit.

    ReplyDelete
  7. margaretJanuary 24, 2011 at 3:36 PM

    These are great and I'm so glad he has golden hair like a lion too.

    ReplyDelete
  8. BevJanuary 25, 2011 at 1:38 AM

    What beautiful joy in his eyes - Leo, you just keep on showing the doctors that anything is possible.

    Bev (Elaine A.'s big sis)

    ReplyDelete
  9. Michelle M.January 25, 2011 at 12:11 PM

    I am so glad to hear that Leo is doing well. We pray for him every day. The first photo is just precious. What a handsome little guy!

    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

Putting The Lion Back Into The Wild

I'm actually home tonight while the 'boys" are at the PICU for what could be, maybe, possibly, our last night. It's almost hard to believe that we could go home. It's like those animals who have been in captivity who are finally let out almost don't know what to do, and often cower in fear and confusion in their cages. We would be cowering, but that sounds like it takes too much energy. We are completely exhausted after ten days of this shunt malfunction marathon.  Yesterday afternoon Leo had the hopefully final surgery to fix his shunt. The Neurosurgeon replaced all the tubing and tunneled a whole new channel for it as far away from his lungs as possible. During which he discovered that the connection between the tubing and the shunt valve was leaking and welling up CSF as he was examining it. Also his old tubing was inserted pretty high under his breastbone which often can jeopardize the integrity of the surrounding tissues; in other words, the plu...
8 comments
Read more

Kinda Like 'Nam.

First off, sorry about the disjointed nature of the posting from yesterday. I was updating via text messegaing from my phone and because the service is patchy in the hospital not only were the posts chopped up but they were frequently out of order. You have to be a sleuth to figure it out. On the other hand, I guess it was a direct reflection of what we were experiencing! Between getting little bits of info and there, we had no clue what was going on. This is what we have been able to piece together since yesterday. The surgery itself was a definite success, though there were a few surprises. One of which being that when they took out Leo's shunt of 8 months they discovered that it was not working. Huh??? He never showed any symptoms of shunt failure and brain compression, so what the heck? In between the sobering list of items now holding risks for our guy, the nuero surgeon dropped this little bombshell on us. Does that ...
18 comments
Read more