Birthday, probiotics and potato!

I've been slacking again, but we've had a very busy couple of weeks!  To start off, we began giving Brynn a probiotic a couple weeks ago and it was going really well. We increased it a little each day, until we got to 1/2 capsule.  Once we reached that amount, we started to see some symptoms, the main one being an average of 8-10 nasty diapers a day again.  We pulled the probiotic for 2 days, and then started it again, only doing a small amount.  Within a day, she was back to normal, diapers and all. Whew!  I think we'll stick with the small dose for awhile now and when we DO increase it, we will do it even slower this time. 

Brynn's birthday was March 24th.  She had a great day at daycare!! However, it turned out to be a pretty sad day...Danny and I spent the day at the hospital with my family, as my Grandpa passed away.  =(  I won't get into details, but the day sucked.  I was so happy to go pick up the kids--I really needed those smiles, hugs and kisses.  LOVE THEM! 

We had her party on Saturday with our families.  She didn't care about the gifts at all, LOL, but she sure liked playing with the boxes and ribbons!  Unfortunately, since she can only eat pears and sweet potatoes, we couldn't eat any birthday cake. Obviously, she doesn't know what she missed, but I do.  It made me so sad for such a long time, knowing that my baby girl, couldn't dig into her little cake, like most 1 year olds get to do on their first birthday.  She needed something special, so I made her a foodless cake. She smashed it and tore it apart and had so much fun with it!  We plan on using the fabric to make her a very special blanket.  The other kids were a little confused as to why there was no cake at the party, but we decided that if Brynn can't eat cake for her birthday, then we don't need to have a real cake.  It still makes me sort of sad thinking about it, but I feel better knowing that next year (hopefully), she will be having 2 cakes--one for her first birthday and one for her second.  =) 

Now that we have the probiotic under control, we started a potato trial yesterday.  She had it once yesterday and twice today with NO symptoms.  WHOA!!!  I'm totally on the look-out for different things to make using potato products!! There's a potato starch, potato flour, CheeCha puffs (which I'm ordering tonight)...I can't wait! I think potato will open up a lot of doors for Brynn and I'm just excited!  Keep your fingers (and toes) crossed for us that FPIES doesn't show it's ugly face during the next few days of the potato trial!!!!!!

Update and insurance info

Yesterday, we started a probiotic for Brynn.  I broke open the capsule and sprinkled a pinch of it into a syringe with water....she spit it all out. I'm thinking she at least got a little taste of it, which is fine considering I wanted to slowly introduce it to her anyway. This morning, I mixed 2 pinches into her bottle.  The probiotic box says to mix with something cool and NOT to mix it with something warm. I thought we would have issues with it, because she typically likes her bottles warm.  I made it room temperature and she actually drank it..ALL!  I was nervous to put it in her bottle for a couple reasons: 1-the bottle would be room temp and not warm, 2-she hasn't been finishing her bottles lately, leaving an oz or 2. So if she didn't finish her bottle, I had no way of gauging how much of the probiotic she really got.  But, she did it!  YAY!  I'm assuming we will see some die-off symptoms, but hopefully, she can get through those fast, get to a complete dose, and start some food trials! We are getting very antsy over here and want to get her another safe food!  Next foods are white potato (to get some variety and finger foods), blueberries (finger food) and avacado (for its great nutritional value)...and coconut (for its gut-healing abilities).  Can't wait!

We are still in the process of getting the EleCare (elemental, prescription formula) through our insurance company.  They needed pretty much ALL of B's medical history--growth charts and everything from her drs (I believe they talked to a few of the specialists she has seen as well).  So far, the EleCare WILL be covered....but...first we have to meet our yearly deductible and then they will pay 75% of the costs after that. Since formula is B's main source of nutrition, she will be going through a lot of it.  We are looking at a formula that costs approximately $756 a month for the amount that she needs.  Yikes.  We aren't quite sure how we are going to make this happen, but we have to, and we will.  If we can get another couple safe foods for her, we could cut down the amount of formula she needs each day, which will help!  Please pray for some passes!!!!  (And pray for us to win the lottery too haha!)

My beautiful baby girl will be turning 1 tomorrow! Watch for pics!!  Happy birthday Brynn!!  I love you!!!!!!!!!

I love EleCare!!

Well, aside from how INSANELY expensive it is, of course.  =)  Honestly though, Brynn has changed so much in the last few days! Saturday was her first day completely on Elecare....Sunday she started walking, Monday she learned to go down the stairs by herself (turns around, lays on tummy and slides--cute!) and Tuesday...wait for it...she slept through the night for the first time ever!!!!!!!!!!!!!  Not only did she sleep through the night, she was NOT in bed with me, she was in her crib!!!  I got up about 5-6 times and had to peek in on her to make sure she was ok, yup, she's moved since the last time I looked!  She was up a few times last night, but hey, you gotta start somewhere, right?

Again, I want to say thank you to those moms who sent us their extra cans of EleCare, as well as those who helped us find those moms!  THANK YOU!  Words can't express our gratitude.  I feel so connected to these moms, and I've only met one of them face-to-face.  It sucks that any of us have to be in these murky FPIES waters, but since we are, I'm so glad we all have each other to lean on.  =)

Tomorrow, we see a pediatric GI specialist. I'll keep ya'll posted on how it goes! 

Happy St Patrick's Day!!

The good people out there

There have been a few FPIES moms that have posted what FPIES has done for them.  Now it's my turn! =)  FPIES has definitely made me a stronger person.  I typically tend to back down easily and just say "ok whatever" in order to avoid conflict.  Now, I fight for what's best for my daughter.  No one can hold me back now, I'm stronger than ever.  =)  Thanks to FPIES, I am now a label-reader.  And wow, there are strange things in some foods!  FPIES has made me an eager, active learner.  I strive for new information on what can help my little B.  I understand things now that never in a million years I thought I would. Most of all, I was reminded that there are still good, caring, kind people out there.  People who check in on us, making sure things are going ok.  People sincerely asking how Brynn is doing with a new food trial.  Knowledgeable people who offer advice/ideas on what may work better for B.  People I can turn to when I'm having a hard time understanding FPIES or just having a difficult time dealing with everything that comes our way because of FPIES.  People who give you ideas on how to fight the insurance companies, trying to get them to cover our children's *only* safe form of nutrition.  People who offer unused cans of extremely expensive formulas to others in need.   People who set out to help you FIND these formulas at a cheaper cost or even no cost.  I am so incredibly thankful for these individuals.  It brings tears to my eyes knowing that numerous people, some who have never even met me or my family face to face, could be so kind, so generous, so amazing.  Thank you THANK YOU all of you. 

Dr J visit

We had our visit with Dr J at the Pediatric Center for Rare and Complex Diseases yestereday. 

-received a prescription steriod cream for her eczema flares
-thinking she has a milk-protein allergy
-2 cans of Elecare (prescription elemental formula) to trial to see if B does better on that
-Brynn more than likely has some chronic inflammation going on, which may be causing her to fail all the recent food trials (since December)
-testing for dust, cat and dog alleriges
-after trialing Elecare, we will move to a single strain, dairy/soy free probiotic

We should have more info/answers within the next 4 weeks and will keep everyone updated!

A visit outside our comfort zone

Well, on our trip to New Jersey, we had to (gasp) eat in a public place.  Other than home and a few relative's houses, we haven't really.....gone anywhere.  Wednesday, we found out how difficult going out to eat was.  We were at the airport and our flight was delayed, so we decided to have lunch at TGI Fridays.  It was rather hectic and reminded me of why we just eat at home =).  We contemplated using one of their high chairs, but just couldn't do it.  Brynn wanted nothing to do with her stroller, so she sat on my lap and we started whipping out toys left and right to keep her occupied.  Fact:  toys from home while you are out in a new, public setting are no fun at all.  She grabbed a napkin.  Fine, play with the napkin.  Straight into her mouth of course.  Yank that out, stick her nuk in her mouth to deter her from putting EVERYTHING in there.  Napkin lasted about 30 more seconds.  So, Danny decided to take her on a little walk. While they were walking, our food came. I figured I'd scarf down my meal before they come back so we could switch and he could eat while I occupy B.  Fact: I am not a very talented food-scarfer.  They came back and Danny sat down with Brynn off to one side of his lap so she couldn't reach the food.  Fact:  11 month olds are QUICK.  Her hand grazed the edge of his plate. UGH, this is too nerve-wrecking!  The nuk came out of her mouth so many times during the meal and her tongue would just go crazy as she was checking out the food on our plates.  Poor baby.  I couldn't help but think of how easy it would be and how happy she would be if I could just give her a chunk of my bread, or a french fry...But, those thoughts aside, we survived the meal. 

We decided it wasn't something that we wanted to do again the next dinner, so we ordered in at our hotel.  B had already ate the food that we prepared for her (sweet potatoes) when our food arrived.  Danny and I took turns--one of us ate while the other played with B, then we switched.  It worked.  It'll be awhile before we go out to eat again. 

We are home now and Brynn couldn't be happier.  She can crawl all over the floor, she can sit in her own (clean) high chair by the table with everyone else and eat her sweet potatoes and pears.  Life is good.  =)
   

Leavin' on a jet plane

Well, the time has come.  We leave tomorrow for our visit to the PCRCD to hopefully get additional pieces to Brynn's FPIES puzzle.  I'm not quite sure how I'm feeling about it.  I'm excited to learn more.  I'm nervous that we won't get the answers we are hoping for and I'm nervous that the results of the tests will not be in our favor.  I'm anxious, I'm happy, I'm scared...but most of all, I'm determined.  I'm determined to help Brynn.