Why can't I do it?

I haven't updated since December.  So sorry.  We had our appointment with the allergist in January.  Jake had his patch test.  We tested rice, oats, bananas and quinoa.  Oats had a slight reaction, and we're talking very, very slight.  ZERO reaction from the others.

Dr. S said we have the green light to orally challenge Jake.  The green light has been on since the end of January.  It's now April 8th.  He said challenge bananas, then rice and oats last.  If he passes, then we graduate and he hopes he never sees us again.

Why can't I do it?  Why am I so afraid?

I look back and wonder if it was as bad as I remember it.  Was he really that sick?  Did he really turn that pale gray color and lie limp and helpless in my arms?

Jake's grown leaps and bounds.  Well, he's very small (3% in height), but other than size, he has grown leaps and bounds.  My once extremely shy, hide in mommy's shoulder or behind her legs, little guy actually said hi to a stranger yesterday.  He rides his bike EVERYDAY.  He drives his brother and sister crazy.  He throws tantrums.  He makes us laugh until we cry.  He has strong opinions. He hasn't had a bad diaper in months.

Why can't I do it?

Jake turned two in February.  Two.  Time keeps moving forward.   We celebrated with Elmo cupcakes and a ride on the train.  He was thrilled.  I still say "shhh.... the baby's sleeping" when he's napping.  He's not a baby, anymore.

He can TELL me if he doesn't feel well.  

Maybe this week.  Maybe.

I will start with bananas.  He knows he can't have them.  He'll probably tell me no.  He really likes to tell me "NO".  He is two, after all.  I will keep y'all posted.

The Siblings

It's been 3 months, wow.  Things are well, here.  Jake is well 95% of the time.  Every once in a while I notice a change in his diapers that make me think he ate SOMETHING, but we still have not had an honest to goodness reaction since he was 8 months old.  I am grateful.  A few weeks ago was one of those incidents, "mama tummy owie", bad diapers, CRANKY, clingy, not a happy boy.  It lasted 4 days.  He also was sick with a fever the week before this and the week after.  Do I blame FPIES?  At this point the word FPIES rarely rolls off my tongue any more. 

We eat out occasionally.  We have our safe places we go.  We ventured out last week somewhere new.  I've learned quickly that most frozen french fries contain rice flour.  I asked.  They did.  I kindly ask my two older kids (6 and 8) to order salad with their dinner instead of french fries.  Not one complaint.  They never, ever complain.  I am continually thankful for their concern for their little brother and their simple sacrifices (salad instead of french fries!) they make without a second thought. 

We were at Costco last week.  My 6 year old asked if he could have a smoothie.  Jake says "yay smoothie!".  I ask the lady behind the counter if there are any bananas in it.  Yes, there is.  Sorry kids.  No complaints.  That's OK Mom.  Can you make us one at home?  You bet :)

So we venture on, checking labels for rice, oats or bananas, and enjoy the life of an almost 2 year old.  We go back to the allergist at the end of January for some patch testing.  If all is well, we will orally challenge.  I will keep you posted. 

Happy Holidays!

One Year Ago

One Year Ago…

• Jake was diagnosed with FPIES
• Jake could only eat sweet potatoes, pears and breastmilk
• Our pediatrician had never heard of FPIES
• I began a total elimination diet and figured I’d be sending bottled breastmilk to college with Jake
• My main resource was Babycenter Fpies group
• I stalked the Babycenter FPIES group hourly
• The FPIES United Family Fund was born
• I was a much better blogger
• I couldn’t remember what it felt like to sleep through the night
• I started reading labels on everything

• I was afraid to feed my baby Jake

Today…

• Jake still has FPIES, but it’s manageable
• Jake drinks cow’s milk instead of breast milk
• I still read labels on everything
• Jake eats everything but rice, oats, bananas, quinoa, beans
• Our pediatrician still doesn’t know anything about FPIES
• I stalk the BabyCenter FPIES group weekly-ish
• The FPIES United Family Fund has raised over $40,000 towards research
• Good Morning America did a segment on FPIES
• There are more resources than BabyCenter:  Facebook here and here or the newly launched FPIESFoundation for example
• If I get woken up at night, it’s my 8 year old, 6 year old, or snoring husband.  Jake sleeps great.
• I’m a bad blogger
• I am not afraid to feed Jake (well, maybe just a little)

A Quickie update

Jake had his 18 month well check.  He FREAKED.  Wow, he wanted nothing to do with anything.  Weighing him came down to me weighing myself (yuck), then weighing us together.  He came in around 22 lbs 8 ounces.  This put him in the 5-10 percentile which is down for him.  *sigh*  I chalk it up to our weaning and the fact that he pooped TWICE before we went :)  He squiggled and wiggled and screamed for his height check.  Somehow he was 31 inches.  WTH?  So that boosted him up to the 25th percentile.  I take it all with a grain of salt.  It was just an off day for him altogether. 

The best news about our visit?  His hemoglobin was up to 13.1!!!!!  Yes, you read that right!  I stopped giving him his iron supplements around the time that he weaned.  So this is all on his own.  I had the biggest smile on my face.  Jake... not so much.  That toe prick is what pisses him off more than anything.

Our ped finally showed a little interest in Jake's FPIES.  She said there's something on the medical boards that has popped up back east called FRIPES?  I think she's confused, personally.  I can't find ANYTHING about it.  However, she said it fit Jake to a T.  Well, so does FPIES, so I'll stick with our allergist and GI's diagnosis. 

Jake at 18 months

I thought about apologizing for not updating the last month, but I don't want to.  No news is good news? Yes, I think that saying says it best. 

Jake turned 18 months old yesterday.  How did that happen??

Jake is weaned.  *sniff*  It has been about 6 days since he's nursed.  He's been doing really well.  We've had a few bumps, then I'd give in and nurse him, but I found I was just confusing him more.  So I did the unthinkable.  I ate a banana.  Then I ate sushi (dear God, how I've missed sushi).  There was no way in hell I would nurse him after that!  And guess what?  He didn't really seem bothered by it.  If he did ask for it, I would say it's "all gone".  He'd fuss for a minute, then move on.  I'm now going through what I feel are like baby blues as my hormones start to adjust once again.  I have mixed emotions, of course.  Happy to see him thriving without me, sad to let that special nursing relationship go.  But it really was time for both of us. 

I've been much more lenient with Jake's food over the past month.  I still scan every label, however.  If I don't see the word:  rice, oats, quinoa, or bananas, I deem it safe. I am grateful for the restaurants that put their ingredients online.  It has made a world of difference.  It takes some effort, but we feel normal because of it.  I don't think anyone really knows how much I still think of FPIES and still watch every little thing he eats.  But, I think this is a good thing.  It's not a big production anymore.  It's just something that is second nature and we deal with now.  I have a feeling in another year we will be one of the very lucky families that will put this strange, rare syndrome behind us.

He eats pizza with the family every Friday night now.  You have no idea what this means to me.  We have had pizza night every Friday since before my daughter was born (she's 8 now).  He can participate.  He loves that he eats what everyone else is eating.  And he likes it!

Most meals I cook he can eat.  Or I have learned to modify to make them safe for Jake.  Nobody has noticed.  We all eat the same food.  I don't feel like a short order cook, making different meals anymore.

I still have a few main things I want to trial.  Jake still hasn't had any beans.  He hasn't reacted to them through my milk the past few months, so this will be trialed soon.  (It feels strange not having my nursing safety net for trialing!)

Jake can eat things that contain soy... but I haven't tried straight soy beans yet. 

Jake has still had a few bad diapers... but not FULL REACTION diapers.  He had one bad blowout this month.  I have no idea what caused it.  We had gone to a frozen yogurt place, but the ingredients in the yogurt seemed fine.  They did have a gluten-free yogurt that contained rice milk, maybe some cross contamination?  Who knows.  Truth is, it was no big deal.  He never complained of a tummy ache.  He woke up from the nap with a bad blow out.  It was over. 

Jake has his 18 month appointment next week.  I'm hoping we'll see weight gain and good iron levels!  He looks healthy.  He talks a mile a minute, saying new words every day.  He makes us all smile with his sense of humor and overall cuteness.  Things are going well. 

12!

Jake had an iron check today.  His hemoglobin is up to 12!!!  Normal! 

Apparently the Vitamin C did the trick.  He just needed a little help absorbing the iron.  I'm so very glad.  If it didn't come up this time, it would be a sign that something else was wrong, which means more tests.

Jake is so DONE with doctors.  As soon as the nurse came near him just to take his temperature he FREAKED.  Screaming, crying, hitting.... More screaming when we weighed him, more screaming when the doctor came in to do her quick exam.  The funny thing?  As the doctor was leaving and I was grabbing my backpack and we were obviously leaving, he quickly blew a kiss to the doctor and told her "bye!".  The doctor thought it was hilarious.

I'm going to continue giving him the Poly Vi Sol with Iron for the next month.  We go back to the doctor in August for his 18 month well check. 

Weaning - I think it's harder on me

Sleep, glorious sleep.  The one good thing that comes out of weaning!  I dropped our middle of the night nursing sessions.  The first night was hard, very hard.  The second night... not as bad.  The fourth night?  He slept eleven hours STRAIGHT.  I slept ten of those hours myself.  I am a new woman!  He is a SUPER HAPPY boy!  Mornings are so much easier when everyone is well rested. 

We're down to nursing twice a day.  Nap time and bedtime. 

It's really hard to let go. 

It wasn't that long ago that I was his main source of nutrition.  I was afraid to feed him anything.  My elimination diet was going strong, he was nursing every two hours AROUND THE CLOCK.  I was sleep deprived, we never left each others side.

It's really hard to let go.

His nutrition is going great.  He has finally started drinking some of his toddler formula in the mornings.  I started mixing it with whole milk, much better.  He will have 3-4 ounces.  I may start adding another serving in the afternoons for him. 

I continue to give him the Poly Vi Sol with Iron once a day at lunch time. 

Ascorbic acid is no longer an issue.  

He will be fine when I take away these final two nursing sessions.  I keep telling myself this. 

We're taking our time though.  In the next few weeks we'll drop down to once a day.  I'm leaving for a weekend at the end of July.  Perhaps this will be the best time to drop the bedtime nursing session.

I will miss it. 

My last baby. 

It's really hard to let go.