It is the little things........

I have been using the dish washer again, FOR ALL THE DISHES. Yes even the kids cups, plates and utensils. Yes in the same load with all the other dishes. Do I rinse off every bit of food from the dishes used for my food, yes.

This is a big step for us. For years we didn't put the kids stuff in the dishwasher for a few reasons. Firstly we couldn't risk washing the kids stuff with ours because they were just that sensitive. Secondly we could not find a dishwashing soap that wasn't filled with chemicals and corn (GMO corn is in everything here in the US). Lastly it just wasn't cost effective to put a handful of dishes in there alone.

I am back on GAPs finally as we are settling in well. So late one night or morning around 2am I was just too tired to stand and wash a kitchen full of dishes. I put a load in that night and the next morning I did a second load. The kids have been fine and the new dishwashing detergent is wonderful (Nellie's nuggets). I no longer even have to stand washing what feels like a million glass bottles (which have a billion little pieces covered in broth fat) and sippy cup nipples. They all go in the dishwasher too!

Some people might not get this simple joy, but for me it makes my life feel just a little "normal". Yes it is normal for me to be awake at wee hours of the morning cooking the kids food :) and still be in the kitchen whole day!

Poop..poop..and...more...poop

For those of you who have kids without poop issues feel free to stop reading here. For those of you in my shoes it is one more thing that GAPs helps.


If you have a child anywhere on the PI spectrum, from MSPI to EGID you know poop usually consumes your daily life......

Well it did for a long time, but not any more! It is rare for us to see the burn-your-skin-off-after-a-few-seconds-of-contact-in-the-diaper-poop in our house anymore.

GAPs is healing the kids and sensitivities to foods are not violent severe reactions that they once were. They are there because we are still healing but they are not sending me into panic mode anymore.

The reason for this post was to say, since the first day of bringing a baby into our house we have finally had a "normal" smelling poop!!!!

This is HUGE and means gut bacteria is slowly but surely being balanced out! Which means this just may be the last post on this blog ever about poop!

Grateful in many ways...

It has been a crazy year filled with many challenges for the kids and I. We spent the summer prepping for our move from the West Coast to the North East. We left the West Coast mid august and by the end  of August we found a place in the North East. The kids missed the West Coast and unfortunately (and fortunately) the North East did not work out for a few reasons. By the weekend of October 26th we evacuated the kids to Florida due to Hurricane Sandy. We just could not risk being without power indefinitely with their mainly meat diet. The kids and I have not been back since. Once again we have moved. Within 3 months we have lived in three different states! It has been tough on us all, but the kids are finally settling here and I think they will enjoy their first winter without any playing in the snow just fine. They love the beach.

Now onto all the things we are grateful for!

1. We are thankful for our wonderful family and friends who have been there for us always, and especially new friends who have helped us with these moves without really knowing us for long. Without their help I don't think we would be where we are today!

2. We have had to leave friends (who are like family) behind on the West coast and our hearts are still there. We miss you all! However we are thankful to be close to family here. The kids can grow up like I did with cousins, aunts, uncles and grandparents around more often, and our West Coast friends can come visit.

3. I am ever grateful for wonderful online support community for healing using GAPs! Every day we move a step forward and sometimes backwards but these families support each other through the good and bad.

4. I am thankful because the kids are CHEWING!!!! Both children have oral sensory problems and for a long time could not chew. Textures are an on going battle, however they are both CHEWING meat! We have come a long way from children who would gag and regurgitate meat pureed finer than baby food. It has taken one year and three months to get here and it feels wonderful! They only chew ground lamb or beef but that is not a problem because we can ground any cut of meat and I can hide new vegetables into the meat (they do not like trying new foods)

5. Last but not least. The kids are EATING more than two foods!!!!!! If you look at the list of what the kids eat you would see it has grown quiet a bit! We had a goal of a few foods this year and I think we have surpassed that goal. It seems like from here on out we are going to be moving on up! It has not been easy and has been filled with many bumps and hiccups. However we are getting there and that is all that matters.

Slow and steady!

Once we settle into our new place more time will finally be allocated to updates.

Bye bye binky, binky, bye, bye!

If anyone watches Sesame street these days they know this song all to well. Even a parent trying to get rid of a binky might know the song. Well we have not gotten rid of our binkies yet but even better we have gotten rid of our bottle nipples and finally said good bye to elemental formula! Yaaahoooooooo!!!!!!!!

The bottle nipple happened while we were traveling for work on the east coast on June 1st and the formula happened the day after big girl's birthday! I was so busy I didn't have time to be excited for either. However a few days later when things settled down it dawned on me what we had accomplished.

Go back two years when my big girl was just a year and we were in hell trying to figure out what was wrong with her. She didn't eat, she cried a lot, she never slept for more than 20 mins at a time. I was pregnant and trying to get her to meet milestones. Meaning I was thinking that she would be reaching all the "regular" milestones like getting rid of the bottle by 12-18 months along with the binky, eating food and other things. Not sure if I was in denial that these things weren't going to happen or if I just felt pressured by everyone that these type of things should happen regardless of what else was going on in our lives. I soon came to realize that I would need to throw those ideas out the window and take on a "screw everyone" mentality (for want of a better term) for the sake of my child's needs. So we did it, we threw expectations out the window and stopped trying to force her to do things that she just could not handle while in constant pain and discomfort. It was a huge weight off my shoulders and I think hers too because we didn't sweat the small stuff anymore.

Along came little man and low and behold he has been meeting all these milestones without us even trying. You see he never had to endure the pain, tests and doctors that his sister did (because we had a clue the second time around about his special needs). He has more or less been a "typical" baby for the most part and hence is very adaptable in situations like this.

The best part is we follow his lead and so does his big sister :D She refused to drink anything out of a sippy cup until he started doing it. She was over two and very resistant and he was newly turned one and though not eager to try new things he would take a shot at it. In one evening I had both kids drinking water out of sippy cups because he tried it so she followed suit. Then we learnt about the chemicals in plastic baby bottles (yup even BPA free ones) and I decided we were changing them to glass bottles (and yes we still needed bottles for a few reasons, one being we used up to 12 each night for night time feedings). I had no clue how to change big girl to a new bottle because previous attempts had failed many times. So.... I tried him first and he made the switch no problem. We quickly ran to the store to buy enough glass bottles to last 24 hrs. She followed him no problem. The born free glass bottles have a sippy cup spout you could buy to use. I started buying them to use for water and both kids were fine with it. During the day I started slowly giving them their "milk" (bone broth) with the sippy cup spout. Of course she was fine with it because little man was doing it. I tried numerous times to use the sippy cup spout during the night time feedings but it would result in screaming from big girl so we used bottle nipples at night. Then one night we only had a bottle left with the sippy cup spout and little man drank it to go to bed, so I offered big sister the same and.....SHE DRANK IT!!! I promptly told hubby that we were not turning back! We threw out the nipples promptly.

Any one who knows our journey thus far knows how much we have been through, knows that Hayls has oral sensory issues, knows she won't chew most food and we spend hours pureeing lamb and carrots to the smoothest consistency. So this is a really BIG deal for us. I am excited and proud to say we weaned from the bottle at 20 and 35 months respectively!

Now onto the formula! When we started GAPs very slowly last July/August the kids were drinking about 40-50 ozs each (per 24 hrs) of elemental formula as their main nutrition. So we started with a teaspoon of broth at a time and as we increased broth and other food we decreased formula. The reason for going very slow was to avoid any discomfort for the children. Ten months later by big girl's birthday each child was only on about 1 oz of forumla (per 24 hrs, a tiny amount sprinkled into their broth). The night of Hayls party a friend (her daughter has the same problem as my kids and is also healing on GAPs) reminded me about something. She told me that 1 oz of formula could not be "helping" the children in anyway so why even bother. That night we dropped the formula! There has been no looking back since. The funny thing is once we got the formula down to that 1 oz the kids started to sleep better and this continued when we dropped it. Sometimes we get both kids sleeping 8 hrs straight. However for the most part Hayls wakes once and little man twice but this is so much better than 4, 5 or 6 times!

So long story short we have made leaps and bounds in our little world! We are beaming with pride and happy to be making progress!

Slow and steady wins the race

I was always an impatient person. I hardly rechecked my tests or assignments before handing them in (yes even in college). I just didn't have the patience. I always wanted things done right away and once I thought of something to do I would jump on getting it done, even at 2 am.

Then I had a baby with something the Drs couldn't figure out and my patience started to wear thin. No one could "fix" her, no one could help us or give us answers.

Two and a half years later I have learnt by experience that slow and steady wins this race and with it comes a lot of patience.

We are still at the same number of "foods" but are slowly plowing forward. We tried Elk broth two weeks ago and both kids got cranky with runny noses at the same time. Coincidence? No clue if it was the elk or if they both caught something at the exact same time. We decided to store the elk in the freezer and move onto fish. However, before that we added in fermented cod liver oil applied to the skin and gave that a few days to be sure it was OK. No rashes or problems with it yet, besides the smell, YUCK! As a lotion we also use coconut oil on the skin and no problems with that thus far.

For those of you that don't know, food or products applied to the skin can cause reactions so we have to go slow even with these applications.

We are happy that the food products are growing over time even if applied to the skin :)

The kids are doing great and therefore so are we. Last weekend Hayls even slept for 12 hrs straight! Of course she hasn't done it since but it was great and a sign of progress on GAPs even at our beyond snail pace.

Thank you everyone for your support!

We soon come fish, we soon come ;)

New year, New hope and a totally different way of life!

As 2011 came to an end I breathed a sigh of relief. We had set goals for a least one new food for Hayleigh for 2011 and well Heath we just were going to wait...............

We are happy to say that GAPs intro is working well so far and in 2011 we aim for over six new foods for each child.

Since starting GAPs in September we have moved verrrrryyyyy slowly from a diet of mainly elecare formula (yummy genetically modified corn based amino acid formula for kids like my own who have severe illness or digestive issues with a side of chemicals in the lovely cans) to avoid "die-off" for both children.

Some may ask what on earth is "die-off" and what in heaven's name has gotten into this woman? "Die-off" from what I understand is where the bad gut bacteria is being starved off and toxins are released into the body. A person with EGID or any other PI problem most likely has a lot more bad bacteria than good in the gut. Therefore as you do GAPs introduction diet and try to restore the balance of gut flora a person can become very sick. My sister and I both experienced some horrible "die-off" and it wasn't something I wanted to subject the kids to all at once.

So besides being able to eat carrots and lamb meat along with drinking lamb, beef (with very tiny amounts of beef in it) and chicken broth (also with very tiny amounts of chicken in) we have been able to add a little treat of "jello" for Hayliegh. We buy pure bovine gelatin, juice carrots or ginger and add a few drops of honey.

They are both on a probiotic that is GAPs "legal", nystatin to control the yeast (which as Hayls tolerates more juiced carrots we will reduce) and iodine applied to the skin (people with digestive issues tend to lack iodine and the skin is the best way to absorb it) to help us move forward.

Next on our list is lamb liver and either fish or venison broth and meat. Also more supplements to help them along and varying the type of sea salts we use to maximize the trace mineral intake.

There are a lot more things to add as we go but because the children have an EGID we are going very slow. Some people can move through the intro in a few weeks. I think it will take us minimum 2 years but slow and stead wins the race so we like slow :)

The learning curve has been very steep, we are still climbing and I don't think there is a plateau. That said, I am loving and embracing the learning. I am happy to know what I have learnt about SAD (standard American diet) which most of it is quite disturbing to me, but that is for another post.

Welcome to 2012!

GAPS

We have been very busy since coming home this summer. The main reason being we started GAPs with the kids. It stands for Gut and Psychology syndrome and is an old theory revived and reviewed by Dr. Natasha Cambell McBride in the UK. In short it talks about the connection between an unhealthy gut and different psycholgoical syndromes. However in this book she also addresses how to heal the digestive tract of people with non-ige food allergies, or sensitivities as she refers to them. An imbalance of gut flora can cause allergies which can then cause psychological and neurological problems. Hence the term gut and psychology.

We started very slowly in august on the GAPs intro and will continue to move forward slowly. We started by introducing chicken broth, then lamb broth, beef broth and now goat broth and lamb meat. We are ecstatic to have 2 foods for Hayls and Heath (he passed carrots over summer). Our goal for the year was one more food for Hayls and we have reached it (hopefully we exceed it). Not to mention the 4 broths they are both having. We will move forward with rabbit, pork and duck. Once we can find good sources (ensuring the meats are grain free) we will add more varity of meats.

It is so exciting to be able to FEED the kids. We have hope again!

Happy Birthday!

Hayleigh turned two this summer. Her party was cancelled at the last minute and we flew to Trinidad. A day later she turned two. In light of everything going on celebrating was far from our minds, but we needed to at least let her have fun.

My cousin and I went out at lunch time and we got a few gifts, balloons, party hats and we even found a birthday candle in the shape of a cake! So we wrapped up the gifts and made a tower "cake" and put the candle cake on top. She loved it when we sang happy birthday for her. She smiled the whole time. It was great and she enjoyed opening her gifts.

Hayleigh turned two! Two years of many unknowns, of many ups and downs. Two years that I sometimes thought I wouldn't survive. Two years of caring for a child with special needs but yet no Dr. knew what those needs were. Two years (and counting) of sleepless nights (yes she still wakes at least twice a night). Two years of worry. Two years of wiping away tears, too many tears for a two year old. Two years of working overtime to turn that frown up side down.......to see that beautiful smile shine. Two years of watching our little girl overcome hurdles that most children her age will never face. Two years of being mummy to the best daughter any one could ask for. We love you Hayls and we wouldn't change the past two years for anything! Happy Birthday.

A little support can go a long way

Visiting Trinidad has given me a break from the constant drain of Dr appointments and living and breathing PI/EGID. The children have been given the opportunity to spend time with our families. It has been very different from our daily routine but a welcome change.

The support we have received here has surprised me. People ask questions, but they listen and they have showed empathy. Only once or twice have we had eyebrows raised or someone say something stupid like "just feed them they'll get over it". Most people have no clue the extent of the way our lives are affected but some are willing to learn.

Simple things like Hayleigh sharing her toys with children I don't know makes me cringe. This weekend gone we were at a beach house with some of my family. There were two other families there that we did not know personally. One daughter was playing with Hayleigh's my little pony toys and decided to spray Off (insect repellant) in the hair. Luckily my mom saw it all happen and washed the ponies after their visit to the hair dresser. But the mother was understanding and the kids knew ask to play with the toys after that.

Close family have paid attention and helped me keep the children safe while on our visit. This has been the best gift ever. To know that you could run to the bathroom or eat without freaking out during a family gathering.

However something that made my husband and I feel like we could continue trodding on our journey was getting an unexpected little pat on the back by a couple we had never met. They have two older kids themselves and made it their duty to give us support and encouragement. You do what you have to do for your children but having it noticed by someone you have only just met and receiving support lifts you up and re-energises the spirit.

Life is too short

We were enjoying a trip to Disneyland with the kids, my parents and sister to celebrate Hayleigh's second birthday when I got a call from my cousin. Her mom who is my mom's sister had a stroke and was in the hospital. We got home that night and we thought things would maybe be ok with her. The next day we set off to Stanford for Hayleigh to have an appointment with one of her specialist. I left the baby bag outside with my parents and went in to the appointment. While in there a little girl had a horrible reaction to eggs while doing a skin test and they had to call 911. We were inside for about 2 hrs. After the appointment we got some lunch and I checked my phone. Things were not looking good and my aunt was now in the ICU. At that moment, on a sidewalk in Palo Alto it was decided we were all (my parents, sister, the kids and myself) flying home to Trinidad as soon as possible. Things turned crazy as I had a few hours to get the kids packed, their medications and formula and other special needs together. Emotionally we were....well we just were.
It feels as if I have been in a dream since then, more like a nightmare. Life is just to short and sometimes we just can't sweat the small stuff.
Right now things such as me waking 6-8 times a night to feed a baby and toddler, my children not being able to eat food, dealing with EGID's constantly and all the other things just seem to be on the back burner. They should be, because they just cannot compare to loosing a loved one.
The kids each had a few reactions during this difficult time and each had one or two sleepless nights. But how do you keep telling people you don't even know to wash their hands and mouths while trying to be there for your family during times like these? I needed the help, the hands to hold a baby or play with a toddler while I was busy. In the end they were both fine.
Almost a month later the dream seems to continue, but how do family members find the new normal after a loved one has passed? I guess it just happens and life goes on. We somehow find the strength to move forward.

Put it in a box

Sometimes I literally have to put my PI/FPIES/EGID/food allergies (what ever label you want to use for it) thoughts in a mental box and hide them in a closet.

Food is everywhere. Food is part of everything we as humans do and for most cultures food is what brings people together. Holidays are centered around meals together. Sharing of food takes place at family events. Even sport events have food involved. It seems that we just cannot escape from food!

Having a child with food allergies is difficult but most times things can be substituted and the child can still eat. Having a child who currently cannot eat anything but carrots is beyond difficult. Parents tell me all the time "you are lucky you don't have to worry about cooking for your kids". Cooking for my kids is something I would love to do and hearing that so many times makes my heart break. I don't think anyone could understand what it feels like to have to deprive your child of food unless you actually have to do it. They would never say something like that if they understood really what it was like. I do have to spend time in the kitchen freezing pureed carrots, making baked carrot chips, boiling carrots and trying to think of a million other ways to feed my child the one food she can eat.

So at some point the stress of parties, playdates and all the other things that should be fun for a toddler and parent get to you. How many times do you have to see your child look with longing at the other kids eating, having to wipe toys and make sure no food touches your child before you want to scream, cry or just give up?

Many times I just want to not go to these social events, but then what am I teaching my kids? I need to be strong for them. I need them to understand that they can still enjoy life without food even though society says differently. I need them to know they can be anyone and do anything no matter what life throws at them. I need to be their MOTHER and show them the way when they feel to give up.

So sometimes at night when my brain can't turn off, when I am consumed by the battles my children face daily. I remind myself to open that box put all the PI/EGID thoughts in it and tuck it away until I am strong enough to face them again.

Relief and Heartache...... all so bitter sweet

Just 3 days after Hayls upper and lower endoscopies the GI called to give me the first set of biopsie results.

My heart skipped a beat, and my mind started to race. I wanted to know if the results confirmed an EGID. I was hoping it would and yet I was hoping it wouldn't. I didn't want her to have an EGID but at the same time I didn't want us to have done one more test with no answers. I didn't want to have one more failed food trial and still no diagnosis.

Sadly the result is Hayls has EGE (Eosinophilic Grastroenteritis) . My heart sank because any EGID is a life long illness and for some it consists of a very limited diet. Some people cannot have any food but elemental formulas. EGID's in themselves are rare but the type she has is even more so. The GI said our approach thus far with food trials, medications and trying to achieve gut homeostatsis is great. He fully agrees with the path we are traveling on and seems to be supportive of what we have planned ahead.

Then comes the relief side of it. The relief that we have a diagnosis and now we have to fight just a little less to get special order medications for the kids (e.g. they cannot use regular tylenol or motrin so I have to get them compounded) and the help they need for the various ways these food allergies affect their lives.

My mind is still in a fog a week later trying to process everything. Trying to find the missing link for possible gut healing for the kids.

I still have so many questions, so much unknown.

Sometimes the biopsies even though they have eosinophils do not necessarily mean the person has an EGID, but the GI looks at other things such as the lining of the digestive tract and a few other factors. Well (besides the fact that her eosinophil count was very high for eating food for only 4 days the week before her tests) Hayls fits everything and so does Heath. When Heath is a year old we will decide when he will be scoped to specify his type of EGID.

As a family we still have hope. Hope of maybe one day calling this a bad dream or hope of just finding some food they can eat. Either way it is hope and we do the best we can to move forward one day at a time.

We really really like our new pediatric GI

The same week with our Stanford appointments we met with our new GI. First off I just have to say we really like our new found team. Our pediatrician (who was stumbling around in the dark with us for a long time) helped us find a new allergist (who admits she knows very little about the non-IgE allergy world, this is a breath of fresh air for us, a Dr who admits she may have no clue :D ) who helped us find the GI.

He was on the kids files before we even met him. When we had met with the allergist a few weeks before she was actually consulting with him before our appointment. He waited until after we were done with the allergist and met again with her as we were done. We saw him but at the time had no clue who he was. He had joined our team before we even knew about it.

Besides him yawning through out the first 35 mins of the appointment he was great. Even though he was up to date with everything from our new allergist he listened to the histories.

He is convinced both children have an EGID. Some people would think this is extreme but all the symptoms fit a lower EGID. He listened to all our concerns and said he thought it was time to scope. I was relieved to have a GI who actually was as concerned about the children as we are. I asked for certain non-routine biopsies be performed to rule out secondary issues. He didn't even ask why, he just agreed! I almost fell off my chair. Our last 2 GI's were not like this, one had only agreed to do a scope because "Dominique is having such a hard time dealing with this" (of course this rubbed me the wrong way on many levels, my child is sick and you are ignoring it but anyways back to the new GI). He also accommodated our request to do the procedures in a few days because my mom was in town and could watch Heath. He then listened to our concerns about Hayls reacting to anesthesia medications and the colon prep. He willingly gave us alternatives. We didn't have to fight to get him to believe she could have a reaction to the surgical tape or anything else that we have had to fight to get Dr's to believe. He accommodated us and showed empathy.

On discussing the scopes he said that it most likely would not show anything because she has been on an elemental diet for so long and we are so careful with food trials. He said that would not change his mind about her having an EGID. Just that we have taken all the right steps and what we have done is mostly the right treatment for EGID. We knew all this already, but to hear it from a Dr was like some weight was lifted off my shoulders.

Since we have seen him I have sent many emails and he responds within a few hours and addresses my every concern. He has been better in the short few weeks than some of our Drs have been for almost 2 years.

Having an EGID is a life long battle, and it may mean being on elemental formula for life. It may mean only a handful of foods to eat along with this. It is grim but having a Dr assume the worse strangely makes it easier for us as a family because we have support. It feels better than a Dr saying "oh she'll out grow it by 1" you wait and that time comes and goes and your child still cannot eat any food. Then they say oh by 2, well we are just about at 2 and still only one safe food. So to have a Dr say I think this is the case and address all our issues and concerns is wonderful.

We still hope for the best but are cautious, we don't want to live in denial.

Afraid of sleep

Hayleigh is afraid of sleep, or that is the way it seems.

When she was younger and we were trying to figure out what was going on with her she would not sleep. Not during the day, not during the night. It used to take over an hour to get her too sleep sometimes two. We would have to feed her then hold her upright for about thirty minutes then try to rock her to sleep. Eventually when we did get her to sleep we would bring her tucker wedge next to or in our bed so we could pat her back or give her the binky every twenty or thirty minutes or on a good night every hour or two. I have no idea how we made it through those nights for over a year.

Now, at almost two, we lay in bed with her to fall asleep and on a good night she is asleep in fifteen minutes but most nights it takes thirty to forty minutes and some nights it can be as much as ninety minutes.

She keeps her eyes open as long as possible when falling asleep. She is beyond tired but won't close her eyes and it drives me crazy. Then I think back to those nights of her crying and not sleeping. I think why would she want to sleep if she knows she would wake in pain? Now we only have those nights when she is having a reaction or something is just not right. On average she wakes every three hours for 5 ozs of elecare and these nights are good ones.

Hopefully the nights of waking in pain are going to become far less common and one day she will no longer be afraid of sleep.

Stanford Appointments

Last week we had a full week of appointments for the kids. The one I was looking forward to the most was the one to see the specialist at Stanford who actually knew something about FPIES and everything else that falls on the non-IgE allergy spectrum (EGID's and enteropathies and everything in between).

I will admit to feeling a bit disappointed with our first appointment especially after having a few days to think about it.

We spent the first hour giving the history to a very eager resident. She obviously had read about FPIES to prepare for our appointments and knew all the "textbook" stuff (funny because I'm sure if there is anything about FPIES in a text book it would be very limited knowledge in more ways than one). She asked all the questions that spelt out she had never really seen a patient with anything on this spectrum. I held my tongue many times and was patient because I have been on the other side. I have been the student learning from patients in a hospital and eager to see in person what I had learnt about in the textbooks.

She then left and I knew she was going to discuss our cases with the Dr. and he would push her to come to some conclusions and bla bla bla. Well 35 mins later they finally came back in. At that point we were starting to loose it. Two children under 22months in a small room for over 1 and 1/2 hours was starting to get old.

The Dr came in and the first thing he said was "So what can I do for you?" (OK so rewind a few months back when we had an allergist who would not help us and that was the last thing she said to me before denying my children a referral to Stanford). So needless to say this totally rubbed me the wrong way. I quickly moved passed my frustration to try to figure out what he meant by walking in and asking us this question. Isn't he the Dr., shouldn't he be the one to look at the children's histories and tell us what he thought? I am still not to sure what to make of this.

I just responded by a short history and what we have done so far and other stuff that I cannot remember. He agreed that the next step would be endoscopies of the full digestive tract to rule out or include other findings (but my instinct tells me it may not shed much light on our situation, but if it does I will be very pleased!) and once the results are in we would most likely move forward to an in hospital food trial.

His next step was to ask us to pick a "convenient" food that has been previously failed to do the in hospital food trial. Well this rubbed me the wrong way also for many reasons.

1. There is NOTHING CONVENIENT about having children who cannot eat food and who gives a crap about CONVENIENCE if it causes your child pain. We don't care what is convenient, we want our children to be able to eat anything once it doesn't cause pain. So if someday they can only eat millet or quinoa and most people have never heard of these things I really don't care because at least they can eat SOMETHING. Dairy, soy, wheat and all the other foods we have failed I guess would be considered convenient.

2. T-cells in the GALT system take a minimum of 18 months to shed. Each time you eat the food that you react to the memory on the T-cell becomes more ingrained. The more ingrained the memory becomes the higher the possibility that even when the T-cells shed the reaction will occur again. We have not passed 18 months with any of our food trials (we would have for rice but she was exposed to it in another food we tried around 11 months of age). Some would say well you haven't reached it why not just do the trail. Well we have been trying to get beyond a baseline to a place of healing and gut homeostasis. Therefore a trial of a known allergen will set us back. Right now it may not be by too much because Hayls has had a few set backs but the idea of moving backwards just makes me feel uneasy, and it takes so looonnnnnnggggg to get back to baseline and pain free place for her.

3. He said he has never seen her have a reaction so this would give him the opportunity to do so and run any tests while the reaction was occurring. That it might give them an idea of where in the digestive tract things were going wrong. Not sure if I buy all this either, I still think it is more like "we have no clue what is going on so lets run the experiment again and see what happens" type of thinking.

4. Most of Her reactions are delayed so staying in the hospital 24 hrs may not show anything and then we are stuck at home with a sick child for days after.

He went on to talk about the kids maybe having some sort of enteropathy which means a reaction in the lower intestines which may be possible but most enteropathies from what I understand are outgrown by 2 to 3 and we are at 2 with only one food that she isn't always interested in. So hmmmmmm I think kind of unlikely and seems we are dealing with more than "just an enteropathy".

By now I am sure if you have gotten this far you are wondering why am I still entertaining this Dr. I am second guessing myself and I'm not sure if he is a good fit for us but at the end of the appointment I pushed him......

He kept saying that not much is known about these disorders and that all we have is the research being done but that the research was just that only research. That nothing is for sure. It was almost like he was constantly giving a disclaimer. Like he didn't know what box to fit the children in so he just had to tip toe around the whole issue.

I took the tests results from Dr. J in NJ for him to look at and see what he thought. I was hoping he would shed some light on them. He once again said the whole disclaimer stuff, but at that point I just gave him a summary of what I understood of the current research. I think he then realized that I was not going to settle for the disclaimer and he needed to give me something to shut me up.

At that point he looked at Hayls results for about the 3rd time, but this time really looked at it and said she may have some oral tolerance due to her IL-12 levels. I hadn't spoken of oral tolerance once during the appointment. I knew he knew ALOT more than he was letting on and I knew previously that he had done some T-cell research himself.

The only reason I am willing to give him a second chance is because of his knowledge of the current research. Not because I agree with his approach so far, but who knows maybe the second time around things will be different.

Wonderful support team!

It is easy to get caught up in the difficult and heart wrenching aspect of having two children with a chronic disorder.

However when you have a wonderful support network ( filled with parents and family who fly across thousands of miles to help, cousins and friends who listen day in and day out to your struggles, siblings who lend a hand, friends and neighbors who step up to help any way they can, friends on the other side of the country who call after what they thought was a sad blog to be sure you are OK, friends and fellow FPIES moms who listen and help even when their plate is fuller than it ever should be, friends who follow our journey and send words of encouragement and a husband who makes a thunder storm feel like a slight drizzle) things just seem a little bit brighter and life gets a little easier.

I am taking a break right now, right this moment. A break from FPIES, and break from all the medical jargon, the medical research, the constant thinking ......thinking...... thinking.........in this break my heart is filled...........

It is filled with joy and I am grateful for all that I have going for me, for the kids and for my family. We are blessed in many ways and FPIES just happens to be on our plate.

We have a great support team and we love each and every one of you!

Time flies when you......are busy with 2 FPIES babies

Almost a month has passed since my last post and so much has changed and yet so little has changed. Hayls continues to speak long sentences and sings songs even making up her own words to tunes she knows. Heath has turned into an active very loud 6 month old who shows no signs of slowing down or softening his screams at his sister. Hayls is slowly warming up to Heath and holds his hand and pats his head but won't let him touch her or won't sit on my lap if I am holding him. Life goes on with two kids under two and sometimes I fool myself into believing we are a "normal" family. Sometimes I even think of feeding the kids food.

Behind these seeming normal things my world is being rocked and shattered daily. Hayleigh is crying for "food" more and she knows that we don't eat carrots for every meal. Heath is getting upset when he cannot eat anything (We are yet to try him with food and I have no idea when we will). My heart is being torn to pieces every day in more ways than I can count but I put on a smile for the kids and move forward.

I am fighting daily.....still fighting for so many things...... such as something as simple as medication for my kids. Motrin, neither child can have it so the pediatrician and I have been going through red tape to get just the ibuprofen powder so I could provide pain/fever relief if necessary. Something as simple as Nystatin for yeast (which is causing Hayls incredible discomfort in many areas) needs to be compounded for them. Basically everything you ingest needs to be reconsidered, turned inside out and torn apart and then stripped to the basic ingredient to see if they can tolerate it.

Finally our battles with the Drs seem to be paying off and we have gotten approval for both kids to be seen at Stanford. We also have what seems to be a great allergist on board and we see a new GI next week but they still all tell us that they have no clue about FPIES and so much is unknown. Many questions follow, such as is FPIES just part of what is going on? What else is going on?

I haven't blogged in a while because I feel as if I can barely keep my head above water with the regular kid stuff, the FPIES battles, hubby traveling and the dog having seizures.

However, I continue to thread water and whenever I tire, my great support: fellow FPIES moms, friends and family help keep me afloat. You know who you are and I would not be where I am without you! Thank you for your continued support through these very though and trying times, thank you for everything!

New Jersey Appointment

It has been a while since I last posted. Things have gotten really crazy around here. Days fly by and I always have the intent of doing things after putting the kids to bed but some how I always manage to fall asleep with them.

We made it to New Jersey in one piece and Hayls decided that crying most of the day was the in thing. So it made out trip even more crazy. We are back home and I am trying to get her settled and the crying back down to a minimum.

For now I will give a short update. Our appointment went as best as it could with a toddler crying the entire time. Basically my brain turned into mush and I tired my best to keep it working....lol....

We finally got our official diagnosis for both kids: FPIES.

That said FPIES is a world of mostly unknown and the information out there is work in progress via research. Our main source of help has been other FPIES moms and families and this will continue to be our main help.

We finally had a Dr. sitting in the same room with us who understood our every concern and nodded in agreement with everything we said! It was wonderful!

We were told however that they will never outgrow FPIES but it could improve once we achieved digestive tract homeostasis. Even when homeostasis is achieved anything could throw it off such as a stomach virus.

We are just happy to have a Dr. assist us on our FPIES journey!

Stupid mommy!

I think I was getting too comfortable with our unknown oranges. We had stopped because I wasn't sure. I was just getting to comfortable hearing other moms trying different things. I think I slipped into a state of "she is out growing this".

This morning at 1:14 am I was startled back into REALITY! Hayleigh woke up screaming, she wouldn't let my husband hold her she only wanted me. Which was ironic seeing that I was the one that most likely was causing the problem.

Go back to Friday morning: we are trialing carrot juice (yes we have to do a trial even though she can eat baby food carrots as the protein content may be different as the juice is raw). She loves the "idea" of juice but really won't drink it. So to make it taste better instead of the normal water with a touch of carrot juice I also added a touch of orange juice. This was the stupidest thing to do, because 1. I didn't read the carton to see if anything other than oranges were in there, I just assumed because we ALWAYS buy pure 100% orange juice. 2. I didn't call the manufacturer to see if cross contamination was an issue.

Back to last night she would settle and cry again and scream and just sit with her eyes open. We wondered was it a sore throat? After her nap on Friday she would only drink an oz at a time and I thought it strange. I also notice she couldn't scream as her voice was horse, she had her hand down her throat making herself gag. Everything was going in her mouth and I didn't even think. With the screaming she held her chest just once so I ran to get mylanta cherry supreme (which has more things she cannot have, but I had no time to mix calcium carbonate) while she cried some more. After 30 mins that didn't work she was still trying to settle but couldn't. She was farting and let out a little weird liquid poop. Eventually we got the motrin out (something else with stuff she cannot tolerate) but after 45 mins that worked and after 2 hours I finally put her back in bed next to me. So it seem yes she had a reaction to the 0.5 oz of orange juice in 8 ozs water after only sipping maybe 5 times for the morning.

This morning I get up and look at the orange juice and it has calcium hydroxide, malic acid, citric acid and vitamin D3! STUPID, STUPID, STUPID MOMMY!

The Battlefield

Some girls dream of weddings. I never did I always dreamt of having a baby. So when that day finally came I was exstatic. We had a difficult labour with my baby being sent to the NICU but we went home with a perfect baby and life was great for the first 2 weeks. I had taken care of a lot of babies since I was 10 even premies. I had more baby and child experience than all my friends put together. So if anyone could take care of their first kid with no problems it was me.....

Then all hell slowly broke loose............

Enter the battlefield: only I had no clue what was coming and no clue I was in a battlefield.

I never thought I would have a child with medical issues far less a rare one which there is no test to diagnose and one that most Drs are totally clueless to and have no clue how to treat.

The crying started, the multiple mucusy diarrhea, the reflux and all the other symptoms. I searched and found a formula with a different whey/casein ratio. I thought this may help. It didn't. I found reflux and her Pediatrician agreed. We started the medication dance. Then we did the tests and the GI said no reflux, but we tried one last med and it worked so it was GERD. Then enter food allergies/intolerances and the battlefield became a mess.

The battles with the Drs had me in tears many times. Since then the battles in my battlefield are too many to count. Seven Drs and counting and numerous battles with each of them. Some of them have been banished from the fields, one allowed back after redeeming himself and one fights by my side most of the time. She was unsure at first but now urges me forward at during the times I want to retreat.

We now stand at the cross roads: Hayls only has only the amino acid based formula and carrots. Ever day tears are shed by her, tears crying for "food,eat". We need more soldiers on our side and we are in search.......today we lost one we thought was on our side, but clearly they were not. This battle today had me in tears and angry that someone who is supposed to help their patient instead turned their back due to an over sized ego. I cannot describe how it feels....... if you have a sick child and have to fight to get them the help they deserve and have Drs tell you no.......only then will you understand.

Everything the Drs told us we didn't need we did.......the special formula......the medication.......the need to take food trails slow......and many other things

They told us she would out grow it by 4 months, then 6 months, then 12 months but we have reached almost 2 years and there is no sign of the problems disappearing. Now they are telling us "if" she does out grow it it won't be till she is entering her teens.......

The battle continues as we search for soldiers to fight not only one battle but now two battles on my one little battlefield..............