Friday, September 2, 2011

What's Going On

Here's the gist of what has happened or is currently happening with Samuel...

Invariably, we will have an upcoming doctor's appointment and I will think, "WOW, Samuel feels so heavy.  He must have gained at least a pound since we last weighed him!"  But when the red numbers pop up on the scale, I'm painfully disappointed.  20 lbs.  20 lbs.  20 lbs.  He's been stuck there for three months now.  I'm fairly certain that the lack of weight gain is due to his mobility.  It may also be due to the fact that we are not making much progress with table food.  He continues to drink 20 oz of Pediasure a day (yes, from a bottle) and several jars of the non-lumpy stage 3 purees.

What table food WILL he eat?  Carbs. Carbs. Cheese.  Oh....and did I mention carbs?  On the menu:  lil' crunchies, cookies, bread, cheese, Baby MumMums, Cheetos, and any other crunchy junk food.
He refuses to eat anything squishy/soft.  It seems to be a texture issue because he doesn't even try to put it in his mouth (which is very unlike him - EVERYTHING goes in this kid's mouth.)  I'm hoping to have him re-evaluated for feeding therapy...but I'm not holding my breath that he will qualify.  SIGH.

Samuel continues to see Speech, Occupational, and Physical therapies several times a week.  After two months of beginning therapy, he had become comfortable enough to do more than cry at each session.  Recently, he's reverted back to his old ways of un-cooperation.  I'm not sure what's going on....but hopefully we'll figure it out soon so that they can begin making progress once more. 

I feel a bit torn about therapy anyway.  Many of you micro preemie mommas out there realize the importance of having in-home therapy during the winter months when we need to keep our babies isolated.  Very few clinics in our area offer in-home services.  Part of me wants to pull him out of therapy and keep him home....away from all of the other germy kids who attend the same clinic.  But the other part of me knows that this clinic comes highly recommended.  I know that Samuel NEEDS the therapy.  I also know that taking him to therapy during this winter might provide some relief from the cabin fever that defined my life last winter.  Any thoughts?

Developmental therapy did their yearly re-eval last month (he was 16 months old and 12 months adjusted age.)  Here are the results of two different tests:

E-Lap Test       HELP Test
Gross Motor = 15 mo.       Gross Motor = 14 mo.
Fine Motor = 12 mo.       Fine Motor = 12 mo.
Cognitive = 12 mo.       Cognition = 12 mo.
Language = 12 mo.       Communication = 12 mo.
Self-Help = 15 mo.       Adaptive = 16 mo.
Social Emotional = 12 mo.       Personal/Social = 12 mo.

So as you can see, he's pretty much on track for his adjusted age (where he SHOULD be if he had been born on his due date.)  I'm fairly happy with that, but I can't help but wonder at the doctor's statement that preemies tend to 'catch up' by the age of two.  Really?  I just don't see that happening...

The regimen of daily medicines that Samuel takes has changed slightly.  His Miralax is a must....but the other meds are slowly becoming less necessary.  We've decreased the use of his Flovent inhaler (much to the dismay of his pulmonlogist) and hopefully we will have him off of it by the time cold and flu season ends.  I just don't like the side-effects associated with it.  His Prevacid also seems to be unnecessary as we haven't heard him reflux in ages and spitting-up is a distant memory.  The plan is to discontinue it in the spring as well.

On the whole, things are going very well.  He's really growing up!!!  We're really praying that his eating will improve over the next couple of months - more table food, less bottles, and weight gain!

(All photos taken by Kim Lowery Photography.  Aren't they GREAT?!  Go check out her site.  I'm POSITIVE that you will love what you see.)


  1. Oh my goodness! He is doing GREAT!!! I'm right there with you in the debate about therapy in the winter. Last year, we were able to have in-home therapy.. but this year, I'm not sure we qualify. Is it worth it? Especially if Jack doesn't even pay attention in therapy these days? It's a toss up...

  2. I love all the pics! Too funny - Cade was stuck at 20 lbs too (he now weighs 21 lbs)and Camdyn just now got to 17 lbs (she was at 16 lbs for months). The nutritionist told us what we should be feeding them, and I told her that's what we had already been doing. They just don't gain weight easily. We plan on continuiing with therapy through the winter and see how it goes. They started last winter in Jan. and luckily did not get sick. I feel like the therapy is really helping. It sounds like Samuel is doing great "catching up". By the way, a lot of our therapists say the catching up by 2 is more myth than reality.

  3. Thank you Sarah!! Samuel makes it easy. I loved seeing you and him both. Thanks for the support=)

  4. Hi Sarah, From what Mandy says, and what your blog and FB page tell me, it sounds like Samuel is a normal kid, eating issues (don't I remember that). He sounds like he is doing great, enjoy every moment with him, take one day at a time, it seems like it is going on forever right now, but you will look back and long for those moments of isolation. Parenthood is tough, and through each moment, you think this must get easier. Cherish and love him every day that he needs you. He reminds me of Shaun, who do this day, still has food fetishes. No child in the 1st world has died from Malnutrition. He is fantastic. By the way, I love the photographs that Mandy brought back with her. I am loading them onto my pc tomorrow. Can;t wait to hear more tomorrow morning about Mandy's trip to you. Love you all so much.

  5. As a pediatric speech therapist, I can tell you that we always had parents who did not follow the "stay home if you are sick" rule but we also did our best to sanitize toys, etc. Maybe it would work if you could talk to the therapists about it and allow them a few minutes at the beginning of the session to clean everything in your presence (for your peace of mind). Just an idea...

    My other thought as a therapist is that...if therapy is helping, stick with it! If not, take a little break and come back later (if possible). Sometimes kids really focus on a certain area of development and all other areas fall off for a while.

    You know Samuel the best, you are the expert on him. Trust your intuition!

  6. One of my 17 month olds is tiny also. She is currently 19 pounds and is a picky carb lover, too! While she does have some mild texture and oral aversions, we're not dealing with anything serious and the doctor has never been concered about her weight. I can imagine it is stressful for you always wondering if Samuel is getting enough. My son takes the Flovent inhaler for asthma and I haven't noticed side effects, but now you've got me wondering. I guess I should research it more. Good luck with your therapy decisions. I think we will be semi-hibernating for the winter, too, and I am not looking forward to the cabin fever either.

  7. My 2 have just - over the past couple of months - begun eating the majority of their calories through their table foods. We've finally packed up the remaining purees (doing this helped immensely with their reflux which still kicks when they have a cold) and they have finally become a bit less interested in their bottles (umm - they are almost 30 months old - and were still getting their bottles to go to sleep). After wringing my hands about possible preemie issues, I've decided that our petite little wonders look and act perfectly healthy! Eating issues? If everyone's toddler ate so well, things like Pediasure and the up and coming "toddler" formulas wouldn't me made would they? Samuel sounds and appears absolutely wonderfully healthy and on target. The 2 year catch up thing? I don't have to tell you it's bollocks in my opinion. Sorry for the book - just wanted to say you're wonderful, he's wonderful, enjoy your hibernation, follow your instincts, don't let the testing get to you (advice I myself should follow eh!?)