No longer in the dark

Emmy was diagnosed with FPIES late December of last year. When she was diagnosed we were given a couple of hand outs on the syndrome and told to cut out a lot of her foods then sent home, that was it. We had never heard of her syndrome before and had to teach every doctor, paramedic, first responder, nurse, ect. on how to care for her and exactly WHAT the syndrome is.  When we were first diagnosed i came straight home and looked it up on-line, i found Jack's video and bawled knowing that was what our daughter went through for months. I had no idea what we were going to do and knew of no one else with a child who had FPIES as well. We were in the dark for almost 9 months when it came to first hand advice or the chance to speak to some one who had walked a day in our shoes. We knew of no one else who knew what FPIES was nor what it stood for. 
    I was at work one evening and my nurse pract. from when i was pregnant with Emillia came in, she asked me what the name of M's syndrome was and litterally jumped out of her seat when i told her, she informed me that she had met another mother who's child was just diagnosed with FPIES and that she had her telephone number for me. I cried, i couldnt help it, i took that card with the phone number on it and went staright outside and called.......... The other FPIES mommy and i finally got in touch with each other and talked for quite some time that night ( until my phone died actually.)  She introduced me to so many other amazing FPIES mommy's on line.  They have all been the answer to our prayers! every one of them we have met have been there for us if we need advice, someone to listen to us, or even to give us great ideas on what we can do to "disguise" M's new foods.  It finally feels like we are no longer in the dark and it is such an amazing feeling to be able to turn to them knowing they have walked "that day in our shoes." Our family and friends have been great through all of our journey but they will all admit it- they don't know what to say because they have never been where we are.
    To all of the other FPIES mommys' i have had the chance to chat with and have gotten to know your stories as well as share ours with- i know we've never met face to face before but we are forever greatfull for you guys and all you have done for us in such a short time of knowing us. We no longer feel like we are in the dark and we know we are not alone in this FPIES journey any longer. Thank you again SO much for everything all of you have done for us, we appreciate it greatly......

New Food Trials

   It has been almost 1 year since Emiilai has had a full blown FPIES reaction, i guess that happens when she isnt allowed to trial any new foods. Now that we have been given the ok to start trials again against quinoa (which passed) corn (gritts) quinoa pasta, venison, pork, spinach, tomatoes (sauce/ketchup) soy margarine, and olive oil it scares me to death. I try to not let it show but i know every time i introduce a new food we have a chance of her having a reaction and everything that goes with it. We can't seem to maintain her weight to save our lives. She's never been over 22 lbs and within the past 5 months has been down to 16lbs9oz.  M gains an average of 1oz every 4 months. M still wears size 3-6/6-9 month bottoms and will soon be 20 months old, the doctors say she is the average size of a 9 month old.  We trialed her quinoa but i deffinately lost sleep over it, every time she would sigh or roll over at night i was afraid she was going to start the vomiting.... her dad is terrified to trial anything with her when im not at home, we were supposed to start gritts today but he refuses to so i will start them with her tomorrow, fingers crossed. Its hard knowing what the little ones have to go through and i don't blame them for being leary against new foods, i would be as well if i were in their shoes. It still frustrates me some days knowing that what our bodies need to thrive and grow they can't have 90% of.  I accept M's syndrome and try to learn new things about it every chance i have but it seems to confuse me the more i read knowing that no 2 FPIES child's diet is the same nor are thier reactions.......

STOP! Please, I don't like that.........

   Emillia and i were on our way to Brainerd one day to meet her new pediatrician and she was acting up in the car like crazy. She was screaming/yelling at the top of her lungs, throwing stuff in the front seat ect.... I looked in my rearview mirror, held up my hand and said "stop please, i dont like that" she thought that was the funniest thing ever, she repeated it over and over for like 10 minutes during the car ride. We got to the clinic to meet her pediatrician and him and i got to talking while Emillia played. Then came time for him to examine her.... totally forgot what we were saying in the car but she DIDNT, the doctor goes to listen to her heart and M throws her hand up in the air and says "STOP! Puh-LEEZ! I DON"T like." The look on her doctors face was priceless and thank goodness he started laughing and played games with her for a bit before trying to listen to her heart agian. How do you explain to a toddler that when you ask them to stop doing something they need to listen but when she says it to a doctor of all people it doesn't work quite the same way.....?

NaNa NO-NO

     Jordan and i talked in length when M was still just little about not wanting to use the word "no" with her but chose to say something different to her when she got into something she shouldnt be in or was doing something she shouldnt be doing. We used "re-direct please" or "stop please i dont like that" So you can imagine my surprise when she come home one morning from staying the nght at grandma and grandpa's house and that NO word came out of her mouth. She was under the kitchen table and i asked her to get out from underneath it...... she looked up at me and cocks her head to the side and says "NNNnnnnnoooooo" in such a sweet little voice, i was shocked and laughing at the same time. I asked her not to say that word again but know i messed up once i laughed at her cute way of saying it. That was all she'd tell me for the next 10 minutes everytime i asked her a question. So of course i asked her where she learned that word and she looks up at me and says "NaNa No-No"  BUSTED Grandma!!!!! Still to this day Emmy will refer to that particular grandma as NaNa No-No...........

Pickles Puh-LEEZE?!

     Emmy's grandmother makes amazing crock pickles so in late summer/fall you can walk into their house and guarantee that there is a full crock of pickles sitting there. They are the best pickles i have ever had. Same thing a couple of months ago, i walked into their house and there was that crock full of freshly started pickles. I grabbed one and sat there and Emmy came running over, she had tried a pickles before her diagnosis but Mayo had us limit alot of her foods at the time of diagnosis and i never thought twice about pickles, until that day. Emmy didnt have a "special" treat she could have other than her ice cubes (which she still loves to this day) Well that day i figured i would re-trial them with her, thank goodness i did because that is her absolute favorite "treat" these days.
     There have been a couple of times when we've ran out of pickles and have gone to town just for them, it's a total melt down if we don't.  She knows right where they are in the store and will go open the cooler door until i grab them out. She gets so excited over them and will always ask "PICKLE Puh-LEEZE" while signing. I know people probably think i'm nuts but i have sat down on the grocery store floor with her numerous times, opened that pickle jar and giver her one right there. I hate the looks some people give us but to be honest i don't really care what they think any more. If something so little in life can make her day then by all means i will do whatever i have to to make it....... It's the little things in life that matter the most........

Grocery Shopping

        It's amazing how much you don't actually realize how much our lives/day revolves around food until your child has FPIES or a food allergy.............(or even you or a family member for that fact)  Jordan and i would always have so much fun grocery shopping, we don't go grocery shopping any more really, it's just not fun any more.... We took Emmy grocery shopping with us one time and she was so cute walking down the isles with us, she'd crouch down and look at an item and then give us such a big smile like "can i have this?!" we would tell her no and she'd shake her head and stand up and continue on. I didnt think it would bother me so much until about after the 10th time she did this and still she got the same "NO" as a response, she looked like she was ready to cry. She hung her sweet little head and walked over and grabbed her daddy's hand and walked next to him the rest of the time not even looking at the shelves any longer. That didnt even last another 5 minutes, i was in tears and we checked out and left. THAT broke my heart. I try not to take her to the store anymore if we need much for groceries, it seems like such an unfair thing to do, she knows she cant have what she sees, I however LOVE taking her to her specialty food store, we litterally spend a half an hour in there, she gets SO excited when we go to "her store."
     It amazes me how such small things can be so emotional when you have a child with such a rare syndrome, there was one day i walked into the grocery store to get Emmy her "safe foods" for the week and i started crying, its the same thing every time i go in- 12 sweet potatoes, 10 mangos, and strawberries or blueberries if they are fresh enough........ I bawled, i look at all of the other foods that would be fun to make for her and know it would be nothing but a punishment to give her....... Its gotten easier as the time has gone by but it is still hard some days.
    Before Emmy started solid foods she was able to have baby food mangos, sweet potatoes and apple sauce. I went in to get her baby food for the week and AGAIN i cried, i grabbed her mangos and they had switched them to "smoothie mangos" Gerber added rice as a filler... she could no longer have them. It seems silly to cry over food some might think but when your child is so limited on what they can have it is worth crying over some days if you ask me.........

"Emma" as she calls herself.......

The title says it all here, Emillia went through a stage where everytime we'd call her Emmy or Emillia she would correct us and say "NO....... EmMa" Still not sure exactly where she got that from or why she always called hereslf "Emma" but she did that for well over a month. Thinking maybe when we called her Emillia and then Emmy she put the two together and got EMMA? Still, anyway pretty cute, the reason i'm writting this one is due to the fact that she was referring to herself as EMMA again today.............

PKU re-test and our "BIG girl"

We had Emillia re-tested for PKU recently (which came back negative!) anyway, the two nurses who were taking her blood sample that day were having a hard time keeping her blood from clotting too fast, they had pricked her little finger and were applying a ton of pressure to her poor little finger to get what they needed for the test. It took probably a good 10 minutes to get all that they needed and Emmy is beyond mad at this point and was bawling, (i don't blame her........) As Emmy is crying one of the nurses tries to console her and says " it's ok baby girl, don't cry" and Emmy automatically stops crying, looks staright at the nurse and says in such a matter of fact voice " I not  baby, I  BIG girl!" The nurse looked at her not sure what to say but we couldn't all help but laugh at this. The nurses referred to M that day as "Shirley Temple" with her crazy curly strawberry blond hair, and, i swear they gave her an entire roll of stickers..... every time she'd say and sign "PUH-LEEZE?!" they'd just hand her another one. She was covered in stickers by the time we got home. That was the day that i realized that she wasn't "our baby" any more (she always will be, just don't tell her!!!) but that she IS growing to be such a BIG strong girl!!!!

Manners

We've worked on sign language with Emillia for quite some time now and one day her and i went to the store to get her the fisher price medical kit for her upcoming doctors appointment (which if you don't have this kit i'd highly suggest it! it comes with a blood pressure cuff, band-aid, thermometer, "shot" and a stethoscope plus a little bag to carry it all in)  It was suggested to us by a great friend of the family. Anyway, we went into the store to get the kit so Emmy could do to the doctors  what they would be doing to her. (it works amazingly by the way!) So we go into the store and we cant find it to save our lives, and of course M wants to play with everything else she sees, shes 18 months! What else would you expect? So M is terrorizing the store as im looking for this kit and the lady helping us was sooo crabby. We finally found the kit and M is carrying this darn thing which is taller than she is, we take it to the front counter and Emmy pays for it, the lady gives her back our change and M says AND signs "thank you" (her language is very clear for her age)  the lady just stood there and looked at Emmy for a couple of seconds them M looks at the lady, points to her, shakes her head and says, "NO, you say you're welcome" as she signs this as well............. the look on the lady's face was priceless......... I was very proud of my daughter for using her manners but since when does an 18 month old need to teach a grown adult about manners......?

SERIOUSLY?!

Jordan (Emmy's dad) and M were in the kitchen "cooking" one night and i was sitting in the living room watching them. M was standing on her pink princess stool which she carries around EVERYWHERE. I couldnt tell you what it was that she was doing exactly that night but i started laughing and before i could think about it i said to her "SERIOUSLY Emillia?!" and i started laughing, she didnt miss a beat, she looks at me and then up at her dad as she's climing up on her stool and says to him........ "yeah, seuiouthsly dad" with a great big grin on her face. We laughed so hard we cried!

Darn Dog!!!

ok, im going to skip around a little bit here just thinking about some of Emmy's funny days........ M and i spent the  day together on this particular day and her dad was due home at any moment and i was feeding her sweet potatoes (fries)  Her dad came home and i set her plate of "fries" down on the table to unlock the door for him......... our dog decided he wanted some of her "fries" as well and knocked the entire plate on the floor, no sooner did i hear the plate fall i hear Emmy yell...... "AAAAHHHHHHH, d@$n dog! you ate ALL of my mangos!!!!!"  Then it was a total melt down, huge alligator tears...... it was too funny/cute i couldnt help but laugh. It's days like that that make us feel like we have a "normal" life.......... Whatever "normal" is anyway.......

Tortilla shell and a 2 year old.......

I will take blame on this one, even though we didnt know what was going on with M yet, we tried to keep her away from any and all foods, there were 4 of us in our family that fed M otherwise we didnt allow anyone else to feed her........ I went to Brainerd with one of my sisters and her 9 yr old and 2 yr old. M was in between the two of them in the back of my car and we went through Taco Bell drive-through......... My 2 yr old niece was given part of a tortilla shell which had nothing on it........ In less than 15 min on our way back home M started getting fussy, I thought she was just tired......WRONG! M started projectile vomiting EVERYWHERE.... i knew she was having an "episode" because of the smell (when M has an episode her vomit has a very "tarnishy" scent to it, i throw out her oufits she was wearing during her episodes because i can never get the smell out of them no matter how many washes)
          We got to my sisters and took her inside, i sat with her in one of the bedrooms on the floor rocking her, i had to change her diaper/outfit more than 4 times in less than 30 minutes, she vomited MORE THAN 50 times in less than an hour that episode... I sat there hoping this episode would pass as i was holding her rag doll (limp) body in my arms, then i remember noticing the color of her skin start to get very pale. My sister and i loaded her back up in the car (i drove and my sister rode in the back with M) My heart dropped when my sis said the words "sissy, i dont want to scare you but we need to call 911, she's not responding........"  ( writting this i'm sitting here getting tears in my eyes, that was so hard to hear) We called 911 and they met us about 10 min from the hospital.... again though once she was in the fresh air she perked up a bit and was looking around... once in the ambulance however she went back down hill and if we hadnt been so close to the hospital they would have intubated her. That night in the ER we lucked out and got an amazing doctor, he had never seen anything like what was going on with M.  He told us he had no idea what was wrong with her but it was his top priority to get her vomiting to stop and that we needed to get her to a specialist..... We already had our appointment set up for the Mayo again for 2 weeks from that date..... He informed us to get her in sooner.....
              To this day i think that was her worst episode, it took her 3-4 days to get back to somewhat her "normal" self but she still layed low for numerous days after that........... It was nice though finally having another doctor closer to home willing to help us even though he had no idea what was wrong with her, he did mention cyclic vomiting but doubted it because her "episodes" happened after eating/being given certain foods.  Oh yeah, did i mention that M never even took a bite out of the tortilla shell..... not a single bite, she simply touched it to her lips................

Finally someone who would actually listen to us!

I rememeber the day when a nurse at the Mayo finally told me that we could set up our appointment...... it was like music to our ears!  We set up M's appointment but because of our insurance we needed a referral to be covered taking her that far from home. It took me 3 different doctors to get what we needed for our referral, but we finally got it! We headed to the Mayo middle of September. They ran every test possible on her, they tested her for childhood lukemia, blood disorder, tumors, auto-immune difficiency, EVERYTHING......I will never forget though when her specialist walked into our room that day and said to me after sitting down "Tell me what is going on with your daughter and what YOU think it could be." He talked to us for almost 2 hours about the possibilities of WHAT it could be, we went home after a week at the Mayo with still no answers but we felt like we were headed in the right direction. All of her test that time came back (-)  We scheduled another appoitment beginning of October and again more testing, again everything came back (-)................. We scheduled yet another appointment for November and sat back and waited. It had been almost 2 months since M had had her last episode................

Episode #3............

To be honest with you i dont even rememeber what M reacted to her third episode, if i rememeber straight though i believe it was to turkey in the beginning of September. Same thing, middle of the night she wakes up after being restless and i know MY stomach started turning. Again the projectile vomiting was immediate, then came the lethargy, and the lifelessness. This episode she went downhill very fast. I rememeber the paramedics taking a little longer to get out here that time and i was standing outside with her, the cold seemed to perk her up a bit and when the paramedics arrived they looked at her and probably thought i was nuts, she was responsive and looking around, her vomiting had subsided. Once in the ambulance though she went back down hill. I had her taken to a different hospital this time hoping for some different answers......... That we didnt get, the ER doctor looked at her and told me she had the flu! As soon as i heard this i was about in tears..... no one would listen to me! When i was persistent that she needed IV's like the other 2 times before he pacified me and started iv's. He then wanted to do lab work and an x-ray on her and at this time it was already after 3am and she was worn out. She was laying in my arms whimpering. I remember asking the doctor what he would be looking for with the lab work and he told me an infection, i informed him that 2/3rds of her numbers were consistently off any day of the week-we didnt do any lab work that time. He then told me he wanted to do x-rays and again, i asked him what he was looking for and he mentioned her appendix.........."nope" i thought to myself and i flat out told him she wasnt getting x-rays she was too worn out. (i knew it wasn't her appendix)
               When i told the doctor i didnt want x-rays done on her he looked at me and said " That's probably a good thing, we wouldn't want to toast her little ovaries anyway.........." I will NEVER forget being told that, i was livid. M was sleeping at this time and i told the doctor i wanted release forms immediatly, that i was taking her home. As we waited for our ride home that night M and i slept in the waiting room of the hospital, i bawled...... 3 "episodes" and still no one would help us....they all wanted to re-run the same test but not do anything different for her......... The next morning i was on a mission, i started calling the Mayo Clinic every day for about a week in tears, telling them there was something wrong with my 7 month old and we couldnt get any answers.... i actualy remember begging them at one time to help me help her....... it was a long week.

Starting to feel a little crazy...........

I left the hospital that day in tears, wondering if maybe i was just crazy, but knowing it couldnt be a coinsidence.  I started striking up conversations with everyone i saw at work and ended up meeting a doctor and a male nurse who both worked at the Mayo Clinic. I rememeber them mentioning something about food allergies and i knew i had to talk to them. I told them Emillia's story and the male nurse gave me his card and told me i needed to call and get M in immediatly. That night i went home and started looking up information on Emillia's symptoms but came up with nothing. The following morning i made an appointment with her doctor and asked her for a refferal to the Mayo Clinic so M could see specialist to see if they could find out what was going on with her. Her doctor flat out told me that "in no way, shape, or form" was she giving me a refferal to the Mayo Clinic, and again that there was nothing wrong with M. Talk about making me feel crazy, if M's doctor didnt think there was anything wrong with her then what was i making such a big deal out of it.... i was determined not to give up tho.... one way or another my daughter WAS going to the Mayo Clinic.......All of this had gone on in a little over a month.  2 "flu" episodes in less than 30 days both after she was given food with dairy in it......

"Flu" episode #2

             M went to sleep that night after eating her itty bitty bite of yogurt bites and around 12am that morning she was tossing and turning in her crib so i got up and laid her in bed with her dad and i.  Within less than 5 minutes of me laying her down with us she rolled on her back and started projectile vomiting AGAIN. I called the ambulance immediatly and again she projectile vomited the entire ride to the hospital, became very lethargic and non-responsive... I rememeber the paramedic that night commenting on the "flu" word again and the entire time i am thinking to myself "this cant be coinsidence, it just can't be." We went to the ER and were admitted and an IV of fluids and steroids were started again. We were kept for observation and released the next morning being given the answer of the flu, possibly cyclic vomiting and to follow up with her doctor the following day. We went home and M slept most of the day just like she had the time before, this time however she had horrible diapers. We went and saw her doctor the following day and her doctor told us there was nothing wrong with M that her father and i were just over worried over bearing first time parents looking for attention and to take her home.......

Our journey continued.......

...............It was a long drive home from Minneapolis that day, we had been to 3 different hospitals and an allergy specialist in 3 days and still didn't have any answers as to what had gone on with M. Maybe it was just the flu, maybe i was just over reacting....? We went home and life continued on as normal for a couple of days, then we started M on baby foods. For some reason the first 2 foods i tried were mangos and sweet potatoes.... THANK GOD for those 2 foods. She ate them well then and loved them and to this day still loves them both. Then one day i spent a good 1/2 hour in the grocery store looking for fun foods for her, i came home with gerber graduate yogurt bites, strawberry and banana little bites, and sweet potatoe puffs. (she had been tested against dairy and wasnt "allergic.") That night after dinner i decided to give M some of the yogurt bites but to my surprise she wanted nothing to do with them which was a shock to me seeing how she ate her other foods with such gusto. M ate no more than a pea size amount of her yogurt bites- (actually if you were to cut a pea in 1/4 she LITTERALY had 1/4 of a pea size amount)...........

Our journey to where we are today.....

            Emillia was born on Thursday February 26th 2009 at 1:04am.  She was 11 days over due and was delivered by emergency c-section, she weighed 7lbs 14oz and was 19 1/2 inches long. She was the picture of health but at 5 days old when we gave her her fomula bottle everything changed...... She would spit up ALL of her feedings, was very stuffy and congested, and wouldn't sleep. We had her in and out of the doctors office more than 5 times in less than 2 weeks each time being sent home after being told she had a simple "cold." During our last visit we asked M's doctor if she could possibly be allergic to her "dairy" formula and we were told she was too little to have allergies. The doctor agreed to do testing because she thought M had severe acid reflux ( this would explain her spitting up every feeding her doctor told us) However on our way home that day i stopped and picked up 2 cans of soy formula and switched her to that immediatly. The very next day she cleared up.......... She would still spit up during every feeding but was sleeping better and no longer stuffy. We had x-rays done still any way and acid reflux was ruled out.
              We coninued M on her soy formula still until her 4 month check up, that was when her doctor told us to put her back on regular formula "it was better" for her is what was explained to us. The next day her Dad decided to re-try regular formula seeing how "doctor knows best".... He gave her 2oz of forumla and waited 45 minutes, she was fine so he gave her the rest of 4 oz for a total of 6oz. Within 30 minutes she was projectile vomiting and soon became very lethargic, he put her in his truck and drove her to his parents-not far from our house- not knowing what was going on with her. She continued to projectile vomit and started to turn an ash grey when the ambulance arrived. During this time i was at work, it was Saturday July 28th of 2009 (i will NEVER forget the day) i received a phone call on the work phone which i never took calls on. When i answered it was M's dad informing me M was being taken to the hospital by ambulance and he wasnt sure what was wrong with her....That was enough for me, a million different things were racing through my head. I informed my co-workers through my tears that there was something wrong with M and that I needed to leave. I dropped everything I had in my hands and ran to my car.
          M's dad called me again and said the paramedics weren't sure which hospital they were taking her to at the time..... Once I found out which hospital they were taking her to I myself took off, the entire drive to the hospital i was again thinking of a million different things that could be wrong with her. I beat the ambulance to the hospital by more than 10 minutes. THAT was the longest 10 minutes of my life. I stood outside by the ambulance garage waiting for them to arrive. I could hear the sirens coming from miles away. By the time the ambulance pulled up i was pretty much hysterical. I rememeber them opening the doors to the ambulance and seeing my infant daughter strapped to the stretcher, she was a blueish-grey color and had a glazed look in her eyes-it was like she didnt recognize who I was. I can't describe the feeling I had when i first saw her, it was heartbreaking to say the least. She was taken in and blood test were started immediatly as well as an IV. Her blood work came back ok even though 2/3'rds of her #'s were off, this they could not explain. It was also mentioned that they believed she has having seizures in the ambulance and that if they had been much further from the hospital they would have intibated her....
          They admitted us that night and kept us until the following morning telling us she must have had a touch of the flu. She slept most of the day Sunday but when Monday rolled around she started screaming bloody murder, you could tell she was in horrible pain. I loaded her up in the car and started into town to pick up her grandmother. We were planning on taking her to Children's Hospital in the cities but couldnt make it further than 30 miles and ended up taking her to a hospital there because her screams had only gotten worse. Once in the hospital they again ran blood test, started an IV and did an x-ray. AGAIN her test came back ok and the er doctor wanted to keep her overnight for evaluation-not planning on running any more test. Once I heard this I informed the doctor that if they weren't going to run any more test that I would like to have her transferred to Children's. That was a flat no. I then informed the doctors' that i wanted release papers immediatly and that i was going to take her myself.  M's grandmother and I took off with her and ended up at Children's around 1am Tuesday morning. We saw an amazing doctor that night but of course by the time we got there she was so tired and wanted nothing more than to sleep, she had finally quit crying and was out like a light. Children's still ran blood work and admitted us overnight for observation. The following morning we were reffered to the allergy specialist in minneapolis where they did scratch test against dairy, egg whites, and egg yolks- all were negative............