June 11, 2009

Positive Thinking

I'm back and I apologize to everyone who reads this blog regularly for having been remiss in my reporting duties! I got burnt-out a few weeks ago. The "not knowing" finally took its toll on me. So, I took a break from being Bertrand's executive assistant and focused on being his mommy. I enjoyed time with Bertrand, friends and family. I threw myself into planning an 18 month birthday party for Bertrand and did what, in my mind, constituted "normal" mommy things.

Coming out of this funk has left me with a mantra (a modified serenity prayer). "Have the serenity to accept the things you can't change. Have the courage to change the things you can. Have the wisdom to know the difference. And, take a deep breath." :) It works for me.

Bertrand had his neurology check-up yesterday and his 18 month well baby check-up today. Both of his doctors were AMAZED at how well he is doing. His neurologist even went so far to say he could be walking by age three to five, *and* she thinks we'll get to see him grow-up. :') I was emotional on the car ride back. So many parents take it for granted that they'll see their child grow up, but for me--hearing that it is now a possibility--I still tear up. I always will.

Bertrand is beautiful and healthy looking. His weight is down to 50th percentile (yay!) and his height is still 50th percentile--so he is finally proportional. :) He was prescribed a once a day dose of valium to be taken before therapy and a new, stronger acid reflux medication. His liver functions will be drawn again tomorrow to see if his weight loss has improved them.

Bertrand still can't get to sitting on his own. He can't stand on his own. He can't hold his bottle or feed himself or crawl. But, cognitively Bertrand is fine! He loves to read... and boss me around. His personality is very strong. He is serious, stubborn, manipulative, arrogant (I never knew one could consider a baby arrogant until him) and often times charming. His displays shock his doctors--and amuse me. :) His therapists frequently don't know what to make of him.

None of his doctors know what is causing Bertrand's movement disorder and neuropathy. They are still very confused. The next MRI in October will tell us a lot. A liver biopsy in July is looking very likely. What's not looking likely is a diagnosis. Matthew and I are prepared to never get one. As long as Bertrand stays happy, healthy and mentally okay, we can make do with that. :)


  1. Glad to hear there's finally some good news coming your way. :)

  2. Kiki:
    You are the "Best Mom" in the world! I love you and you know you made me cry, which is not difficult!
    Big hug and 1,000 kisses to Bertrand!
    Titi Lili

  3. Cristy and Matt:
    I am so relief and very happy at the news. I know Bertrand will keep improving with the love and care of two devoted parents.
    Hugs and kisses to all of you,