Friday, April 13, 2012

Catching Up

Yeah, it's been a while.  All is well, I just haven't had time to post.  Although Samuel is still on RSV lockdown, we have managed to keep busy with long walks, playground swings, and a daily trip to the therapy clinic.

After reevaluations, Samuel will continue with all three therapies (OT, Speech, and PT) - he would not have qualified for speech and occupational therapy if not for his feeding issues.  He easily qualified for physical therapy and may continue to do so for a few years.  Thankfully he has great muscle tone...even if he's a bit uncoordinated!

Our biggest news is that he is FINALLY on the growth chart for weight.  He weighed 23 lbs 14 oz when we went in for an appointment last week.  His two year check-up is scheduled for next week, and I expect to see a big jump in his height as well.

The news about his weight came as a relief since we've drastically changed his diet over the last month.  Not only did we take away the bottles of Pediasure, but we've also stopped giving him purees.  It's been a tough transition for all of us.  Michael and I have been praying for patience as we struggle through each meal time (some meals lasting as long as an hour and a half!)  BUT, there is no doubt that all of the hard work is paying off.  We have seen a decrease in gagging and an increase in the amount of table food consumed - although it never seems like enough food to me.

Welcome to toddlerhood, I guess....
At each meal we offer him one food that he usually eats, a food that he occasionally eats, and a food that he rarely eats.
The change in diet seems to be agreeing with his tummy as we have been able to ween him off his daily dose of Miralax.  We've also stopped giving him his Flovent inhaler since respiratory illnesses in our area are drastically declining.  And if that wasn't enough, we are no longer using thickeners in his liquids!

I just love how all of the reminders of his prematurity are falling away!

What's another mountain?
I had mentioned in a previous post that Samuel would receive one last Synagis shot in March to carry him through April. didn't happen.  Our insurance company decided that they wouldn't pay for any more shots.  To get him another, we would have had to dish out a whopping $5000!  Of course I was frustrated with this news because Samuel will not be protected at the end of this especially prevalent RSV season.  I was also a little disappointed that we wouldn't be able to celebrate his last Synagis shot as our introduction into the outside world.  After spending almost two years isolated, it was going to be a BIG moment!

Speaking of RSV season, I am frequently asked how I know when to get out and about with Samuel.  We have always used the CDC's website to track RSV and flu in our area.  Here is the link, in case you are curious:  CDC's RSV Surveillance.

I know an Easter post was missed by a few of you....I hate to admit that it was just an average weekend for us.  I didn't take him to sit on the Easter Bunny's lap, we didn't die eggs, and we didn't do an Easter egg hunt.  Sad, I know.  Thankfully we did meet an Easter Bunny during Bentonville's First Friday.  Samuel absolutely ADORED him.  As soon as he saw him, Samuel wanted to give him a hug.  When we got close, he practically fought his way free of my arms so he could be held by the Easter Bunny.  So funny and NOT what I expected him to do!

Here are some pictures of our other adventures this month:

We've had a few days in the upper 80s - perfect weather for playing in the water hose.   He just wasn't too sure about it.
A bird (with awesome aim) pooped on his nose while we were out for a walk!
Daddy and Samuel at the Crystal Bridges an inconvenient hour in order to miss the crowds!

I promise to update a little more frequently in the coming weeks!  In fact, I have a post about our visit with a certain well-known local family just waiting to be published...


  1. Ok 3 things- 1) Samuel looks amazing...and he is amazing. I love the bird poop photo. 2) your blog looks so great! love the background and 3)I can't wait to hear about your visit with your famous friends :) You know I'm addicted to their show.

  2. Good things are happening and even more are on the way!! Now you can start really enjoying and not worry so much. Praying blessings on you all day and night!! Love you all so very much!!

  3. Sarah - your blog is one of my favorites to follow!:) I too, have a wouldn't tell by his size now. We do however have many struggles and to be able to read your posts and relate to so many things that you are mentioning is a relief in many ways. My boy is just shy of 1-year and we are active with therapy weekly and have been through and overcome many set-backs thus far. Thanks for sharing. Also, I wanted to let you know about a journal that I am starting for mothers of babies in the NICU. If you'd like to hear more about it, please feel free to email me:

  4. Thole eating thing.... so jealous, but so happy for you!!! I can't wait til that day. What an amazing and FUN time in your life (ending RSV isolation AND eating big boy food!). Go Samuel, go!!!

  5. OK, so I'm a bit slow. I've only just started reading your blog! I came accross it and it sparked my intrest as I also have a son called Samuel, who is a few months younger than your Samuel. MY Sam seems to love many of the same things (tractors for one) and they sort of remind me of one another in their current photos. My Samuel was 9lbs 2oz at birth though - something I think took preemie Pope 6 months to achieve. He is truly an amazing little fighter, may he continue to thrive - and keep up the big boy food! Kate, Melbourne AUST.