Thursday, February 24, 2011


Weight: 17 lbs 2 oz
Day at home: 216
Adjusted Age: 7 mo. 20 days
Chronological Age: 11 mo. 5 days

Sorry I've done a lousy job keeping you all updated.  Thank you so much for the advice and encouragement from the last post - if you offered advice, we tried it - and your encouragement always works wonders for my mental health!!!

The last week has been better.  Samuel has more willingly taken the bottle and we've all enjoyed a rather welcomed break from all of the fighting.  However, as you can see, his weight remains about the same.  He's been hovering right at 17 pounds for the last month.  I'm offering him the bottle and if he doesn't want it then I don't push it.....meaning if he doesn't want to eat for 8 hours then I don't make him.  I AM pushing him to take as much baby food as he can possibly handle.  This arrangement seems to make him happy.....just today he actually reached for the spoon ("I want more.")  He also has been taking a few sucks out of a sippy cup filled with ice cold water (he wont drink it any other way!) 

Speech and occupation therapy will re-evaluate him in the next month.  They should be able to help us with his eating if he qualifies.

I don't think anyone is very worried about his weight so long as he doesn't lose much.  Most of the doctors and nurses have told me that at about a year, kids start to level off.  My argument with that is that he ISN'T technically a year old....and he's already behind.  BUT, if this is all he can handle, then that's what we'll do!

More good news:  we've been approved for Tefra!  FINALLY!  Samuel's nurses visits, doctors appointments, shots, oxygen supplies, and liquid thickener should all be covered now.  Thank goodness!  I wish it had come before we met our out-of-pocket deductible for the year...

The oxygen weening has been fairly successful - he is easily at an eighth of a liter when he sleeps....and sometimes will even take a nap without it.  I will grudgingly admit that the inhaler I didn't want to give him has worked wonders.
I've been planning and working on Samuel's birthday party decorations for the last couple of weeks.  I'm excited about it.  Not just because Samuel is turning one, but it's also good for me to have something to work on.  This past year I've been so busy/stressed/preoccupied that I forgot that I ENJOY being creative and crafty.  (We'll see if I've lost my touch with the lack of practice.  haha.)  Most everything for the party is still in the works, but here is the video I made to show.  Enjoy!


  1. Sarah,

    The video is amazing. I cried sad tears and happy tears, I laughed and giggled and smiled all the way through.

    I just watched a miracle!

    I can't wait to see what you have planned for the party.

  2. You did a beautiful job on the video...cried and giggled through it more than a few times. And so have alot of others. Can't tell you how much I respect and love you all!!!

  3. What a beautiful video! I feel blessed to have gotten to watch it! Thank you for sharing your family with us! You have got a beautiful son!

  4. Glad you got approved for Tefra. I thought it covered for 3 months before your application date. You did a great job on the video!

  5. You are right, it does.....but the synagis shots required prior authorization so we had to pay them out of pocket (and as you know, they are quite expensive.) We met our out-of-pocket with only one shot!

  6. Larry and Jeania BrownMarch 8, 2011 at 6:50 PM

    Dear Sarah,
    Your Dad told us about this video and we just now watched it. Very powerfully good. It caused many ranges of emotion: joy, weeping, concern, more joy and so thankful how the LORD truly protected Samuel.
    In Jesus Name, Dr. Larry and Jeania Brown