Tuesday, October 23, 2012

CutiePie with FPIES and EE?!?!

Today was Cutie Pie's 15 month well baby check-up.  I've been on edge for her appointment for at least a week.  I knew walking into the office that they were going to say she hasn't gained enough weight, but even though it wasn't a surprise it was still frustrating.  She weighed in at 20lbs, 4oz which means she's gained a total of 6oz in the last three months.  Not enough.  Her growth chart curve is plummeting and she has gone from the 90th percentile in weight down to like 10th percentile.  Luckily her height and her head are right on the same curve they've always been. 

I think I've said this before, but I love our pediatrician.  He sat and talked to me for a long time about Cutie Pie and her FPIES and the problems we've had getting her to eat.  He is so understanding and honest and tries so hard to be helpful but it was painfully obvious that we are still alone in our fight to figure her out.  He even admitted that he doesn't know a lot about FPIES and doesn't really know what to tell us to help.  However, we did come up with a plan of action of sorts.  First step is that he wants us to be seen by the allergy department at Cincinnati Children's Hospital.  Although their allergy department is notorious for dismissing FPIES, they are the leading hospital in the country for EGID's and our pediatrician thinks some of Cutie Pie's symptoms might benefit from taking a little closer look to at least rule out Eosinophilic Esophagitis (EE).   If the allergy department at Cincy Children's isn't able to help us, he suggested maybe looking into the resources available at either Jewish National Hospital in Denver, CO which has a renown allergy department or possibly Children's Hospital of Philadelphia which is pretty well known in the FPIES community. 

Reflecting on our discussions, I'm full of conflicting feelings.  On one hand I feel relieved to know we at least have a plan and that our pediatrician is on our side and he made it clear he was dedicated to helping us figure Cutie Pie out.  On the other hand, I'm terrified of the possibility of another diagnosis that has no real treatment.  And then there is the prospect of explaining Cutie Pie's history all over again to another set of doctors.  It's exhausting.  I feel bad for having to put her through more tests not to mention all the expensive co-pays and medical bills - and that doesn't even include the possibility of traveling across the country to see yet ANOTHER set of doctors. 

But somehow God always seems to laugh at my frustrations and He calmly reminds me that He is in control of this.  It must be pretty amusing to see what He sees all the time.  Sometimes I wonder what we all look like to Him running around making plans and trying so hard to do our own thing.  I was doing some reading today and here is the verse I came across: 

Luke 12:23  "For life is more than food, and the body more than clothing." 

I get it God.  I'm so blessed to have such a happy, goofy, beautiful little girl in my life. 

Tuesday, October 2, 2012

Just an Update

Yeah, yeah, yeah.  I know - it's been a while.  I've been thinking about updating this blog for several weeks now, but the truth is I really don't have anything new to write about.  Here is the short version of the last month and a half:

Trialed wheat.  Passed, I guess.  Stopped supplementing with formula in her bottles, Cutie Pie started walking and stopped eating, lost a whole pound (according to our at-home scale), started with the formula in her bottle again. 

 Now you're up to speed.  In all seriousness though, it has been a very frustrating month.  Although there is really nothing new to report, it's because I feel like we aren't making any progress! She did pass wheat, but (like everything else) she won't eat it.  Yesterday was a cold, rainy, yucky day so big brother and I made some sunbutter chocolate chip cookies.  They were healthy and DELICIOUS.  No sugar, whole wheat flour, dark chocolate chips, sunbutter, all sorts of goodness.  Cutie Pie had fun carrying one around with her, but I don't think a single crumb made it into her mouth.  We've tried crackers, pretzels, pancakes, muffins, and she pretty much refuses all of it.  The only thing she has developed an affinity for is goldfish crackers.  She asks for them by name - "feeeeshhhhh"  but if you give them to her she might lick a couple of them and might eat the tail off of one.  I think she just likes the salt. 

Cutie Pie is almost 15 months old and still is pretty much exclusively breastfed (well bottle fed with pumped breastmilk).  For example, tonight for dinner she ate one grape and one McDonalds french fry.  And that was the biggest meal she ate all day.   It's hard to get much trialing done when you can't get her to eat anything.  I am beyond frustrated and I have no clue where to go from here.  ::sigh::  And she is loosing weight now too.  She was up to a whopping 21 pounds on our scale here at home, but just last week I weighed her again and she was back down to 20.0 pounds.  :(  That meas we are at a total gain from her 12 month check-up of 2 oz.  TWO ounces.  We go back to the pediatrician in a few weeks at which point he told us last time that if she isn't eating he wants her to be evaluated by an occupational therapist for her eating issues.   I feel like a total failure here as a mom.  I mean seriously I must be failing her somewhere along the line if I can't even get her to EAT.  If she is this set against eating now, what do I do when she is a teenager and thinks she's fat?  (Although at this rate that is never going to happen....)  Plus, my family likes to eat.  I'm from a family full of foodies.  Is this just the universe's idea of a cosmic joke giving me a child that doesn't like food?   I'm not seeing the humor, Mr. Universe....