Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Friday, June 3, 2011

Two Year Well Child

Little Man's birthday is next week, so we got an appointment scheduled and completed yesterday.   First on the agenda: weight check.  Little man is now 24#8oz. and 34" tall.   He is in the 19th%tile for height and 12th%tile for weight.   Holding his own curve, although it looks like a bouncing ball all around the 10th%tile line- he does stay around 10th%tile.   One the growth chart, it is more about the curve than about the number.   A pound or two at this age is all that separates from one end of the curve to another.   At his highest (at 8# at birth, he was 57th%tile, he hovered in the 40th%tiles for those first 6mo, and then took a plunge from Nov.2009 to January 2009, this is after we tried soy for the first time and when began to multiply quickly, except his weight.   He maintained his own curve again until after corn fail when he hit a 5%tile low, not dipping that low again until after soy challenge fall of last year.   The patterns present themselves when you look at it all laid out on the growth chart graph.  I follow his weights not because I want to obsess over every ounce but because the patterns of intakes and outputs can tell us a lot about what is going on in his gut- healing or inflammation? Absorbing nutrients or malabsorbing them?  

Height taken, it is off somewhere because his height curve is a bouncing ball too....that doesn't make sense.  People don't shrink like that.  But there are a few weights like that too- done in off-pediatrics floor appointments, where I want to just say "don't record that, you didn't do it right anyway and his growth chart is enough of a mountain range".   He is much shorter than his brothers at this age, after all their daddy is 6'3".  But maybe he simply will take after his French ancestors (my dad), so then he's right on track.  

The nurse enters his height and weight in the computer, and prints me the growth chart. She hands the paper to me and Little Man grabs for it, takes it and "reads" it- as if he is studying it.  This gives the nurse a good chuckle.   He does this a lot with books at home as well, full intent into the book- as if he is reading it.   I admit, it is super cute.   The nurse is surprised that he does that a lot.  I comment he does it with writing too- uses a pen/pencil with paper and will look and draw as if with much intent.   She asks to see him do it, so I hand him a pen and he promptly takes it and starts to "draw"- complete with tongue sticking out!  It was priceless and made her day.   "See you later" he says to the nurse, her part is done and in comes the pediatrician.

Quick discussions about his weight gain, and current measurements.  He is growing proportionately, and appropriately at this time, and that is encouraging.  Next is his development.  I check off on a "scoring" sheet for things he should be doing at this age.   He "scores" at 2yrs.3-6mo. on everything which is good that he's meeting base milestones but I already knew that.  It continues to amaze me that he isn't further behind, with everything he goes through.   That said, I don't agree that he is in the 2yrs.3-6mo. milestones category, not if the category's were written with his brothers milestones in mind.   But I do feel the things he may be a few steps behind on, he will catch up.  Here again, he's following his own curve and developing appropriately.  We discuss his speech specifically, I am a little concerned, or more like watchful, that his speech has "exploded".  There is a point with toddlers where they go from a few dozen words to so many you can't count.   Little man has his few dozen words, uses them well, learns a new one every day or every few days (depending on how he's feeling) but he hasn't exploded his language yet.  I'm not overly concerned, just watchful.  The pediatrician feels the same- not over concerned but agrees to be watchful, if we haven't noticed his "explosion" of language within the next 4-6mo., we can move for further evaluations.   I agree, this is a good plan.   The pediatrician adds that he feels little man is just a calm natured little boy, and will talk when he has something good to say.   He is probably right. And he is right that little man is calm natured, we've been getting a lot of comments on that lately and his daddy and I can't help but to think of the first year of his life when we were told it was his "temperament" that made him so fussy and non-sleeping, and crying all the time.   I know, in my heart and soul that Little man was a calm spirited boy- hiding underneath all that pain.  

We wrap it up with discussions of his current diet, current goals for expanding his diet, a peek at his eczema that popped back up after sucrose reaction and hasn't completely quieted down yet.  A complete exam, for which little man is so cooperative for- he has this doctor visit thing down!

And then an anemia discussion.  Last check was one month ago, do we feel he needs to be checked today?  No.....although he had a strong bloody diaper after blueberry (I will spare you the picture I took!), and has started some wood chewing again and has been more pasty looking some days, we had 3 days of Elk going strong, maybe we can replenish his stores with real food and avoid the offset he gets from IV Iron infusions?   The Pediatrician agrees we can do a wait and see, being that his physical exam looks good except his pale skin and somewhat pale in his lower eye lid.   We plan a weight and lab draw for ~6weeks from now, unless something else comes up in between.  Having a plan is good. 

Now, on to planning that birthday party!!

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