Tuesday, March 4, 2014

A mini-CutiePie?

Wow, it has been over a year since I updated CutiePie's blog!  Hard to believe.  The older she gets, the faster time goes.  Life with a toddler sure is busy.  But life is about to get even MORE busy because.....

Wait for it....

CutiePie is going to be a big sister!!  That's right - I am pregnant with baby #3 and due with a boy in the beginning of June.  Adding another member to our family was a very carefully calculated risk.  We always wanted a big family (when my husband and I first started dating he claimed he wanted EIGHT kids!!)  BUT our history of having kids with food issues is scary.  CutiePie is in a really good place right now with her FPIES and has grown out of almost all her triggers - even an accidental exposure to rice "only" led to increased reflux, some discomfort, and some pretty gross diapers.  But i'll take reflux and stinky diapers over uncontrollable vomiting any day!  And I think our comfort level in managing CutiePie's care made the decision to go ahead and try to add to our family an easier decision, but it doesn't make the prospect of having another FPIES kiddo any easier to swallow. 

I.  Am.  Terrified. 

Terrified of reactions.  Terrified of having to go through an elimination diet while breastfeeding again.  Terrified of how much FPIES ends up restricting our social lives.  Terrified of the doctor visits and bills and tests.  Right now I'm kinda at the point of if I don't think about it, it won't happen.  BUT the reality is in three short months I am going to be on high alert for those tell-tale mucus filled diapers that smell like buttery popcorn.  That's how it all started with CutiePie. 

With all that fear and the unknown approaching, we are taking some extra precautions with this new little one.  I will be starting an abbreviated elimination diet several weeks before the baby arrives.  I haven't decided exactly what I will be cutting, but rice and probably oats will be a definite.  I am still debating on milk and soy - although they are big FPIES triggers and BOTH my kids have had issues with dairy, it is completely selfish reasoning that I don't want to give it up unless I HAVE to.  Giving up dairy is HARD. 

We've also decided not to vaccinate this baby at all.  We stopped vaccinations with CutiePie at a year old, and honestly I credit that as the biggest factor in her recovery.  It has been amazing watching her body heal itself.  Not saying that vaccines CAUSED her FPIES, but there is no doubt in my mind that at the very least it aggravated/worsened it.  And the more research I've done on vaccines, the less belief I have in them, so this baby will be unvaccinated for AT LEAST his first two years of life. 

We will also delay the introduction of solids as long as possible - probably until at least 7 or 8 months old.  And when we do decide, we will be leaving grains off the menu for a while.  Right now I say I would like to wait until around 18 months old before introducing any type of grain, but we will wait and see how it goes.  (I'd love for at least ONE of my kids to have a normal first birthday cake from a real bakery!!).  And of course, this little one will be breastfed as long as possible.  I made it exclusively pumping for CutiePie for 19 months.  I am just praying as hard as I can that this little one will nurse well and we can have a "normal" breastfeeding relationship for at least that long.  Ideally I would love to make it until he turns two.  Again, we'll just see how it goes!  If I've learned one thing from my children is that plans almost never go as you expect! 

But for now, this little man is just rockin and rollin in my tummy.  Hard to believe only three short months and he will be in our arms and life will get a whole lot more interesting!  And CutiePie is going to be a fun big sister.  She is the goofy one in this house, and she is one of the funniest kids I know.  She keeps us laughing all day long!  She is almost 100% potty trained, knows all her letters, can count to 10, and is FINALLY growing out of her 18 month clothes.  She is still a little peanut, but what she lacks in size she makes up for in spunk.  We have her 2 1/2 year check-up later this week so we will see where she stands on the growth charts, but developmentally she is right on track!  And she gets more and more beautiful by the day.   This girl is going to have the boys following her around like crazy one day (although not if her daddy has anything to do with that!!). 

Wednesday, February 27, 2013

Non-FPIES ER Visits

Last Saturday CutiePie had her first trip to the ER.  I always thought our first drive-as-fast-as-I-can trip to Children's Hospital would be FPIES related.  I always kinda imagined the puking and the gagging and then the IV's and meds and explaining FPIES a million times to doctors who don't know what it is. Well, apparently all nurses, doctors, med students, EMTs, and registration personnel have no problem recognizing that a little girl screaming her head off with a towel soaked with blood and a fingernail hanging on by only a thread needs attention! 

We were on our way out the door Saturday to go meet some friends for dinner.  Daddy was taking the dog outside and CutiePie was standing by the front door watching him.  BigBrother decided to go out with Daddy and in the process of going out the door, closed it on CutiePie's left thumb.  Ensue screaming.  And bleeding.  So.  Much.  Bleeding. 

We started off by going to our local Children's Urgent Care, but they told us we would need to go ahead and go to the ER, that her injury was more than they could handle.  They did go ahead and take x-rays so they would be ready by the time we got downtown so that was helpful.  So we bundled back up into the car and headed downtown.  Can I stop here and just brag a moment about our local Children's Hospital ER?  I have been less than thrilled with my experience with other departments, but their ER was wonderful.  They took us right back when we got there and a wonderful EMT got CutiePie's vitals and oh-so-gently cleaned off her hands and bandaged her finger as best as he could.  (CutiePie hates to have her hands messy, so the bloody mess was almost as disturbing to her as the painful finger!).  Once she got her "hop hop" bandaid and a dose of Tylenol, CutiePie told me she was ready to go.  She kept pointing at the door and telling me "bye bye" and "go go."  But her finger looked ROUGH.  Really grossly nasty rough.  And painful.  And bloody.  The ER doctor wanted a hand specialist to come look at it and the x-rays showed she had fractured the tip of her thumb as well, so it ended up being something that needed much more than a bunny bandaid!

CutiePie ended up needing to get an IV (tough cookie didn't even flinch while it was being put in!!) and be given several doses of Ketamine (sp?) to make her out of it enough that the orthopedic surgeon could remove her nail, suture the cuts underneath, and then replace the nail and tack it into place to keep the nail bed open to heal.  It took about an hour of her being pretty much asleep for them to fix it.  Nine hours after smashing her thumb in the door we were finally able to leave the ER all bandaged up and with a prescription for some heavy duty antibiotics to keep infection at bay.  We have to go back on Friday (Me and Daddy's wedding anniversary!!) for the hand specialist to unwrap the bandages and make sure it is healing.

I am happy to announce that CutiePie did great with all those different medicines and seems to be doing fine tolerating the antibiotics as well.  With FPIES you never know what is going to bring on a reaction, and with so much new stuff in her system I was really afraid it was going to mess up her gut again.  But she's doing fine!  In fact, the biggest obstacle we're encountering with her healing is getting her to be calm enough and avoid injuring it again.  She isn't exactly the most graceful toddler in the world.  It is still sore and CutiePie walks around all day asking me to kiss her hand, but we haven't needed to give her anything for the pain.  Right now we are just praying that on Friday we can unbandage it and it will be healing nicely and we can go back to life as normal.  The surgeon did say that her nail may never be "normal" again - it may grow back with waves or bumps or just look a little different than it should but her thumb shouldn't loose any function (which is great since CutiePie is left handed!).  The biggest concern is just avoiding infection especially with the fractured bone underneath the cuts. 

I've been a mom for almost five years now and up until this week haven't needed the ER for ouchies (twice Big Brother had to go to the ER being sick, but never for ouchies!).  Here's hoping it's another five years (or never) before we need it again!!

Wednesday, February 6, 2013

Thank You, Help Me Grow

This morning was CutiePie's evaluation for Help Me Grow- our state's version of Early Intervention.  Three amazing ladies came over to our home and pulled out all sorts of developmental assessments to see where CutiePie was on the grand scale of things.  Although a developmental delay is not something we are worried about, it is part of the process to qualify for Help me Grow and honestly it was pretty interesting to see this side of things versus just the strict medical side of growing.  Their findings you ask?  Yep, CutiePie is pretty much a genius.  But we already knew that already! ;)  No, in all seriousness she did not show to have any developmental delays.  With most of the activities and questions she is right on target for being a normal 18 month old toddler.  However, on the more academic type activities she well exceeded what was "normal" for her age.  She even identified shapes and sorted objects by color and size - NO CLUE she could do that.  According to the representative those was a three year old tasks and they just wanted to see how far she could go.  Like I said - genius.  I mean, she is my daughter so who would have thought any differently, right?  ::wink wink::

Overall she does qualify for services through Help me Grow because of her FPIES diagnosis.  We will get a representative that will help coach us and find resources and services to help CutiePie with her eating issues. The two most amazing things that happened is #1 no one rolled their eyes or second guessed what I was telling them.  Not even when I listed asparagus and quinoa as her triggers.  And more amazing - #2  our representative is not only familiar with FPIES but has TWO other local families she works with that have FPIES and said they both have had trouble finding doctors to take them seriously in the area as well.  She took down my email address and is going to try to get us in contact with each other so I have more local support.  Talk about amazing!! 

Will Help Me Grow be a magic bullet to solve all our problems?  No.  But it will allow us to get rid of the useless (and expensive) Feeding Therapy.  It will give us a local person who will come to our home and help figure out tips and tricks and nutrition counseling to give CutiePie a more appropriate diet and help her to get back to a more normal weight growth curve. 

And it's nice to not be treated like I'm crazy for once. 

Wednesday, January 23, 2013

Adios Anemia!

Cutie Pie had her 18 month check up yesterday.  I always feel a huge amount of anxiety when we are headed to the doctor for her well-checks.  Has she gained any/enough weight?  How low will her hemoglobin levels be this time?  Will the doctor take my concerns seriously?  Is she going to catch a bug from the other sick kids in the office that will derail our progress?  All morning yesterday I was reminding myself to slow my breathing and CALM DOWN.  Luckily our appointment was the first one of the day so I didn't have to spend all day thinking about it AND there was a lower chance of sick kids sitting around germ-ing up the doctor's office before we got there. 

Overall the apointment went pretty well.  Cutie Pie was up to 21.2 pounds according to their scale and was 29 1/2 inches tall.  That put her in the 10th percentile for both weight and height.  The good news is that she has not dropped percentage points in weight and since she is small on both scales she is at least proportional.  The bad news is that her height percentage has dropped from the 25th percentile from last time - not a super big deal, but not the direction we really want her to be going.  Our pediatrician did say that it looked like (hopefully) she has bottomed out at around the 10th percentile and hopefully she will just continue along her own curve - it just happens to be at a lower point on the graph than most kids.  He does want to monitor her growth a little closer than most kids too, so we'll be going back more often for weight checks to make sure she doesn't fall any farther on the chart.

This biggest news of the appointment though is Cutie Pie is no longer anemic!!  Her hemoglobin levels were over 11 this time, which means we are doing something right at least!  So yay!  We just got to keep making progress.  Right now we are kinda stalled and holding off on trying anything new because Cutie Pie is showing off her over achiever traits and is already working on her two year molars!  It's pretty hard to tell the difference between FPIES symptoms and teething symptoms, so nothing new in the food world for her right now.  Plus, she is eating even less than normal the last few days (you would too if you had huge molars ripping through your gums!) so there really is no point. 

Still no word from Cincy Children's about the feeding therapy team though.  It has been TWO MONTHS since our appointment and they still haven't gotten around to processing our referral for OT.  I'm beginning to think that was another pointless avenue we tried to explore.  Useless.  Oh well.  Live and learn. 

Thursday, January 3, 2013

Petite and Delicate

If it was 100 years ago, I probably would be a super proud momma if someone described my daughter as "petite and delicate."  Today, not so much. 

I took CutiePie and BigBrother to a popular indoor play area this afternoon.  CutiePie is in heaven whenever we go.  They have everything a girl could ever want to play with - like balls, choo-choos, toy shopping carts to run into things, dinosaurs, and a water table.  (She's not so much a fan of the baby dolls and art center)  What can I say?  She's one tough cookie and BigBrother is her absolute role model.   Well while the kids were racing their "choo-choos" around the train table a random lady came up to me and commented that she was "Just like a doll - so petite and delicate."  Um, excuse me?  Sometimes I just get so tired of the comments other people make about her.  I know they are just making small talk and don't mean anything by it.  But a year ago, no one would have ever described her as petite OR delicate.  It would be like me walking up to you and saying "Oh, that huge nose of yours just does such a great job of holding up those pretty glasses."  It's like a compliment and a put-down all at the same time, or at least that's how it feels to me. A year ago no one would describe her as petite.  In fact, a lady once told me when she was little that I was going to have to start just telling her that she was smart because she was too chunky to be told she is pretty.   ::sigh:: 


Monday, December 31, 2012

2012 - Year in Review

So here it is, 12:30am on the first day of 2013.  I was sitting back earlier today and reflecting on how much my life has changed in the last 365 days.  One year ago I was the mom to a "normal" five month old.  One year ago on Janary 2, 2012 was when FPIES was first introduced to us.  It's when the violent, profuse, projectile vomiting went from being a random stomach bug and an isolated incident to a chronic, life altering disease.  It's when my CutiePie started her journey from chunky monkey to borderline Failure to Thrive.  It's when the fight began.

Here we are a year later.  A year older, a year wiser, a year smarter, a year stronger.   In 2012 we saw nine different doctors in seven different fields (A pediatrician, 2 allergists, a GI, a Chiropractor, an OT, a Speech Therapist, and 2 Nutritionists).  We failed eight foods.  But we made it through the year. So here it is - 2012 in pictures.  

January 2012
Six months old
17lbs, 4oz  25 3/4" tall

Happy Valentine's Day!

18lbs 10oz, 26" tall

Learned to crawl

10 Months Old

June 2012

July 2012
19lbs, 12oz

Learned to walk


20lbs 4oz

19lbs 6oz

HATES the snow!  

What a difference a year makes! 

Sunday, December 9, 2012

Breastmilk vs Heavy Cream....

A while back I mentioned that CutiePie was considered a candidate for the Feeding Therapy at our local Children's Hospital.  Our appointment was about a week and a half ago (yeah, yeah, I know - I'm a slacker at updating the blog.... Get over it).  It was.... well....  interesting.  We got there bright and early at 8am without having fed CutiePie any breakfast so she would be nice and hungry so the team of specialists could watch her eat breakfast.  So we got comfy in a little exam room and in came an Occupational Therapist, a Speech Therapist, a Nutritionist, and a Med Student.  I set CutiePie up with her much anticipated breakfast and we got down to business of watching her not eat.  It couldn't have gone any better.  I spent the entire day before in the kitchen making a ton of food she wasn't going to eat.  She had chicken nuggets, cereal, shredded cheese, a blueberry muffin, some blueberry yogurt, a sippy cup of breastmilk, and a box of vanilla milk.  As starving as she was, she picked up one piece of cereal and about three pieces of shredded cheese and that was it.  She wouldn't touch any of the rest of the food, and then she picked up the milk box and sucked it dry.  That was it.  After that she started throwing food on the floor, trying to feed everyone else in the room - typical meal-time behavior for her.  I almost wanted to laugh when they told me it was hard to evaluate how she moves food around in her mouth and how she chews/swallows if she doesn't eat any food.  Um, yep.  If she would actually eat then we wouldn't need Feeding Therapy!  Then they asked me about a million questions about meal times, our daily routines, etc.  We talked about all the modifications I've already tried to see if it would help motivate her to eat (moving high chair location, booster seat vs high chair vs kid sized table chair, eating with tv, playing with play foods, different plates/cups/utensils, different meal time schedules, etc, etc, etc).  Then they left us there while they went to do some talking and researching to see what they could find that might help us.  One of the ladies commented that I obviously had done my own research and was well informed about the most common suggestions (I even came up with a couple things they had never seen/heard before) so that combined with them not really being able to fully evaluate CutiePie I think had them kinda stumped.

After a little while they came back to tell me the following things:
-  Speech and OT said they didn't know if there was really anything they could do to help since she doesn't really seem to have any physical limitations keeping her from eating.
- The nutritionist recommended starting her on a daily multivitamin, and even brought a print-out of a brand she thought might be safe.  However, the vitamin contains citric acid and xanthum gum which are both corn derivatives.  Supposedly it "doesn't contain any corn protein" so it "should" be safe, but I'm thinking probably not for CutiePie since she is sooooo sensitive to corn.   Her only other suggestion was.....wait for it.....  think about weaning off of breastmilk (CutiePie still gets about 12oz of breastmilk a day in a bottle) and giving her the milk boxes (which are low-fat milk) with some heavy cream mixed in.  She started in on an explanation about how my milk isn't providing CutiePie with as much fat/calories as the milk/cream mixture would, but it was at this point I started to just smile and nod.   Heavy cream is some fatty, creamy goodness but um.... how in the world could it be better than breastmilk?!?!

Heavy cream is from a cow's breastmilk and has calories and protein and fat, and that's about it.  Maybe a little bit of vitamin A and a little Calcium.  My breastmilk is from a HUMAN source.  It's totally unprocessed, fresh, raw and what God intended babies to eat.  It has all sorts of vitamins and minerals, not to mention the anti-bacterial and anti-viral properties.  No way on God's green earth are you going to convince me that giving CutiePie an extra 12oz of cow's milk mixed with heavy cream is going to be an appropriate substitution for my milk.  ::sigh::   That being said, CutiePie does drink one of those milk boxes a day and I have been adding heavy cream into it, but until she is at a complete diet outside of my milk I am not going to stop giving it to her!  Okay, rant over.  Back to the appointment.

After all that was said and done, we saw a GI doctor.  He suggested starting CutiePie on Prevacid with the thought that maybe her reflux symptoms were causing her digestive tract to be damaged to the point of being uncomfortable which leads her to not want to eat solid foods.  Makes sense to me.  He also said that the typical course of treatment for kids who are diagnosed with EoE (they have talked about the possibility that CutiePie may also have EoE) is to scope them, then start them on a ppi like prevacid for six to eight weeks, and then scope again.  So by starting the prevacid now, if it gets to the point they want to scope her for EoE, we would only have to go through it once.   We also talked about starting her on a probiotic as well as trialing some Duocal to add more calories into her diet.  Duocal is a powder you can sprinkle on her foods to add calories, but he warned it is made from corn sugar.  So we are holding off on that for another day - maybe after the holidays.  He also suggested some ongoing occupational therapy to try and help CutiePie eat more food and a wider variety of foods.  He wants to see us back in January to evaluate her again and if she is still not gaining weight (and actually, her weight dropped to 19lbs 6oz for this appointment) then he wants to talk about scoping her. 

Since then we have been doing the prevacid (getting it approved by our insurance is the topic for a whole different post.....) and it seems to be doing SOME good.  She is sleeping better at night - no more coughing fits, no more random vomiting, no gagging at night and she is eating better, but still not great.  She seemed to go through a little growth spurt last week and actually hit her calorie goal two days in a row, but now is back to a more pre-prevacid normal eating pattern.  I still haven't heard from the OT department to get her started with that, but with the holidays approaching I wonder if it will just have to wait until after the first of the year.  So the everyday mundane task of recording every bite of food CutiePie puts in her mouth continues. I just wish I had a problem with making sure I'm eating enough calories each day!  The amount of chocolate I eat is directly proportional to the amount of stress I am encountering, and FPIES and everything that goes along with it is STRESSFUL.  So if anyone needs a Christmas idea for me, some nice yummy dark chocolate would be much appreciated!  ;)