Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Monday, December 31, 2012

Processing....Perspective on Graces received in 2012

Processing...a coping and learning tool I have learned to utilize and strengthen and allow myself on this journey with my son.   With processing brings perspective.

The past months have been a lot to process, the past years have been a lot to process but from long term TPN last summer-winter, followed by food trials (and fails), followed by a formula challenge, an NG tube, formula adjustments and building intolerance, a G tube, a new formula, an 8th formula fail, intestinal inflammation, an expanding menu, functional medicine practitioner, healing properties of broth, trusting my gut, occupational therapy, speech therapy, a growing and thriving little man in spite of all of his road blocks. It is always a lot to process as we learn on each new step of this journey.

If you're following my blog, or more so- the sequence of Little Man's journey, I am attempting a slew of catch up posts (backdated to keep the entries in order).   My postings slowed down around Feb.8th (yes, almost a year ago!) when little man was admitted to the hospital via the ER because of a fever for a potential line sepsis infection (when he still had a central line for IV nutrition/TPN) that turned out to not be a line infection (thank goodness!!) but instead confirmed FPIES reaction (fever, vomit, elevated platelets and leukocytes and neutrophils-with a left shift).  It was a very rough time for us, as a family- with little man's health and medical care, with needing better treatments from his medical team, seeking new consults and fresh opinions, needing a change of course and not knowing which path to follow.  I prayed. A lot. And, I can't say at what point it happened but a new growth- a new level of faith was graced upon me. God looks out for the birds and the crops- why would He not look out for Little Man?  In whatever path. Whether it be my chosen direction or not. As long as we follow His path, He will show the way.  I know that sounds "preachy" or "religious" (what does religious sound like anyway?) but it isn't meant to me....I can't quite seem to paint my soul - this faith that lies within.  This faith that is only possible through graces -- graces given as gifts, from Above.  Asking for graces allows Him to strengthen faith....not asking for Faith or expecting false can't be given faith- you reach it with His grace.   So much processing, so many perspectives granted. I prayed for graces.  I needed them.

Graces to get through what we were to endure during those long months this spring and summer.  What Little Man was to endure. The grace to stand aside and let God lead (I had to pray hard for that one!).  The months to follow- through the above mentioned circumstances, were very tough. But, I was ready.  God had granted me the graces to get little man,and our family through another very hard time -- and (hopefully) come out stronger (and wiser?)...and on new paths. I will attempt to continue to update this blog, taken from journal entries over the year- in case there are others that would like to follow along our journey.

Strength from graces, shielded by Faith, we look forward to 2013.

Acidic Bile Vomit

The other day, I came across this picture....from January, a year ago.  I had washed it 2-3 times by the time I took this picture....and then threw it away.   The pillow looked dirty when it was clean.  I took the picture before I threw it away.  Why take the picture?  Because I am still in disbelief of how this vomit stains EVERYTHING! Before the FPIES diagnosis, or knowledge of anything FPIES- I threw away shirts with these same stains on them- both Little Man's and mine. I would throw them in the wash IMMEDIATELY -we always had a full load by the time the vomiting was done, all the towels it took to soak it up, the bed sheets, the clothes we were wearing, the washcloths used to clean up...and they would always stain.  The stains remain on the mattresses, the pillow themselves, as well as blankets and sheets we are not throwing away, and the some spots on our carpet....yellow vivid stains. A reminder when I change sheets of these long nights....

Bile vomit is very, very acidic. It stains everything. This pillow....this night...the vomit was scary. It made me think of all the times he was alone in his crib, not even waking up to vomit (the allergist who diagnosed him said this was indicative of shock- where they don't even...can't even, wake up to vomit).  This night, the story this pillow tells....a night in January when little man was (unknowingly) reacting to sunflower lecithin that had recently been added to his previously safe Living Harvest Tempt  Unflavored/Unsweetened Hemp milk.  It was 3 nights of green vomit around midnight before we figured out it was the hemp milk (that was previously safe when it did not contain sunflower lecithin).  This night, this last night before we discovered it was the sunflower lecithin  I had just laid my head down on the pillow next to him (hubby or I took turns sleeping with him while he was on TPN- IV nutrition, as his IV line was a central line, we didn't want him twisting and turning in the night and getting tangled in his lines).  I had just laid my head down and I heard this gushing the sound of the toilet overflowing. I jumped and looked towards the bathroom- expecting to see one of my other boys running out of the bathroom- trying to find help for an overflowing toilet.  Except as I sat up, I realized it was Little Man because he the gushing happened again- he wasn't even awake, barely lifting his head off the pillow to vomit this green substance.  I scooped him up and had him in the bathroom a few seconds later (right across the hall from his room) to finish emptying the contents of his stomach in the sink.   I just can't forget that sound....the gushing of vomit, and looking over at him to see his eyes not even open and more vomiting coming....FPIES sucks.

Why share this?   Why share this scary story?  Because this is the reality of an FPIES child, of an FPIES family.   The amount of vomiting that little man has experienced is not normal, not ok, not healthy.   The amount of vomit we have had to clean up, his brothers have had to watch him experience, we have had to help him through....all more than one child should have to endure for sure.  But all the stark reality of these children and families. Maybe this will change one day, maybe more will be known about the mechanisms of this allergic response and future generations will not have to go through so begins with this, sharing our stories (yes, even the 'scary' ones), it starts with awareness of what FPIES is....

Monday, November 5, 2012

Who's on 1st?

I know, I am STILL behind on my blog.  A day goes by, a week, a MONTH and I have very good intentions of getting things updated- to share our journey, our experiences, to help those also following this diagnosis with their little one know they are not alone.  Maybe something we've done is something someone else is experiencing, maybe it would help someone trust their instincts, guide where to turn (Babycenter support boards or The FPIES Foundation website are great places to start!).

I've just been so busy, which I know we all are!   Little man's FPIES and complexities take a lot of research and creative endeavors, thinking outside the box, comparing 'notes' with other families, looking for additional specialists to help as we encounter new challenges or revisit old ones....

The other day, I was reviewing the pronouns "who" and "whom" and their correct usage (in our home school curriculum) and the famous "Who's on 1st" skit from Abbott and Costello came to mind.  I was excited to share this with my oldest son, who quickly caught on to their humor and we ended up watching a few other skits (thank you YouTube once again); and this one came up...."Hold the Ghost".

And all I can think of is how closely it makes me think of how FPIES makes one feel.  I was JUST talking to a fellow FPIES mom about this the other day- how it feels like you're shouting and no one can hear you, or talking a foreign language that no one understands and everyone just looks at you like you're crazy, or maybe even worse- with the deer-in-the-headlights look.  You are completely alone, you are spurting, banging the table, barely breathing, yelling in your head and yet- the words are not coming out, the sound is not even there.  Help me, someone help me....I'm so scared, my baby is having scary symptoms and is in pain...and I don't know why or what to do about it.  So, you wish you could just get out of this haunted place but there is no way out -- if someone could just help you read the map; so you're assigned someone to help you read teh map but they are strangers to this place too and can't quite read by this light, and again you find yourself spurting for words, gasping for breath....and then finally a burst of sound comes out and everyone is looking and the phenomenon settles down....and you look crazy.   And then, while everyone is watching closely for the phenomenon to reappear as you said it would, something else pops up in another place and again, you're left voiceless and grasping not only for breath to breathe but the voice to be heard.   And finally, someone nods their glance your way- and the phenomenon settles down again; and you are assured that someone else understands but do they really?  "Everything is alright".   And you look at the map again, and try to find your way....comparing notes with the others in the room.   One day, you'll find the way...

Saturday, September 1, 2012

Which way are we going?

We have no new foods, and we have put ProViMin aside.  Something was causing full allergic colitis.   We started by checking labs and stools and correlating the ProViMin (increased and decreased) intakes to the results.  The first weeks it was evident something was going on but, just as we were left guessing with his symptoms and ups and downs, the labs/stools left us guessing a bit too....was it leftover from Alimentum RTF?  Alimentum caused full enteropathy: reflux, villi damage, decreased ability to digest sugars, large stools, dumping proteins, malabsorbing calories and blood in stools.  It did not cause the vomit issues we have seen with his reactions, so it was either something trace or broken down and it didn't seem to be flaring his enterocolitis.  But enteropathy is just as bad- just not as sudden.  It took us months to determine that yes, he was in fact reacting to the Alimentum.  I didn't want that to happen again so we were taking the ProViMin cautiously but so many good signs were there too, initially.   ProViMin has less broken down dairy (from hydrolyzed dairy proteins to a piece of a full dairy protein - sodium caseinate) and yet his enteropathy was flaring down, his body was beginning to absorb nutrients again and his hemoglobin that was declining had picked back up....but his iron stores tanked again and his protein stores were not picking back up.   Did we just need more time?    Did we just need to push the ProViMin more?  

So, we came back from camping and I pushed the ProViMin- anytime he was sitting down or started acting up, I would ask if he wanted a bottle; I would sit with him if I needed to get him to sit still and take a bottle.   We did dream feeds (where we feed him in his sleep) and he would wake up 1-3x/night to eat himself.  He was getting ProViMin around the clock.  Things should be improving if he was merely recovering from Alimentum.   

My theory was that while recovering from Alimentum enteropathy, his body wasn't fully accepting the ProViMin either.  My instincts were right.  

His body has been having allergic colitis from the ProViMin.   I'm not sure when that kicked in, or if it's been there the whole time because he did seem to be doing ok on it at first, but then he slowly began to get more fatigued and have poor color, he gets this subtle cyanosis around his lips when his intestinal inflammation is "triggered" - it comes and goes if he is getting the protein throughout the day (such as in his bottle); or it will flare up for a few hours if we are trialing a food.  It's beginning to be a good red flag for us....but I can't stop the food on just that alone, I (unfortunately) need symptoms to add up.  

When we got back from camping, we were turning in samples and going to the lab- one Friday's lab results revealed a "spike" in his normal- he had Eosinophils in his blood and his hemoglobin was dropping, Ferritin was quite low as well.  His stools from a few days (week) prior had a significant jump in the markers for inflammation.  Something isn't right.    The GI called and she was alarmed at the results and felt that it confirmed he was reacting to the ProViMin.  Her thoughts were that we needed to stop the ProViMin and get him scheduled for an admission to re-start TPN (total parental nutrition via an IV).   She has no other idea's on why his body can not accept food right now.  It is the answer that she knows will keep his body alive and his brain fed the nutrients it needs.  I know she is just looking out for his needs- both in the now (stop the ProViMin because it's hurting him) and in the future (provide nutrients via TPN so his brain doesn't suffer later); but I just can't help but ask myself if we are doing the right we look further? Do we go somewhere else for 2nd/3rd opinions?  Do we put him through new tests and hospital stays and who-knows-what-else?  Or, do we just do what we know to do and stay home.    I don't yet know that answer, I've been praying and praying about it.  I just can't see through this muddy dark tunnel.   

For the immediate needs, hubby and I talked about it and we decided a few things.   One is that he wasn't as sick as he has been in the past and we still aren't sure it is the ProViMin.   He seems to be getting more and more corn sensitive, so maybe he got "corned" the day of the stool tests- his diapers that he has always been ok with are now causing rashes (diapers typically have corn starch in the liner, he has always seemed to tolerate Pampers baby dry) so we switched diapers and wipes (7th Generation diapers- tolerates MUCH better) and Waterwipes wipes...which are on the fence of tolerance but a significant improvement over the wipes I've been using with all the corn-y ingredients.   Also, a few days before the lab draw that showed the significant changes, he had had butter and a lick of yogurt (planned introductions to be "push" dairy to see if that is what he was reacting to in the ProViMin and both I had hoped from my research, would be corn free but wasn't positive), he also ate a good portion of pork (same night as the yogurt).   A few days prior to that, he had LICKED a paint brush while painting!!  No idea why he did that, took us completely off guard because he hasn't done that since he was a baby.   Any one, or all, of these things could throw these test results.   The GI was calling me on a Friday afternoon, before she was to leave town for a week with this news.   So, we decided it would be best to wait out the week- continue the ProViMin but do nothing else (no paints!) and see what the next weeks test results would be.  It was a rough week, giving him something we weren't sure if it was safe and that looked to be more and more unsafe but we also talked about doing an endoscopy before taking him off the ProViMin if the blood showed eosinophils again.    Eosinophils in the blood doesn't automatically mean EGID (eosinophilic gastrointestinal disorder) but it could and I don't want to miss this "snapshot" of his body telling us something.   We waited until the next Monday (when the GI doctor was back) to do the labs.  That morning, middle of the night, I gave him a bottle with an increased dose of ProViMin- timed so that it would be about 6hrs. before the lab see if the snapshot could tell us something, anything.    

The increased ProViMIn did not spike his eosinophils again, those returned to normal levels in his blood.   So, the spike of labs in that direction seemed more likely from the butter, yogurt, pork or paints- not from the ProViMin, so that was a relief.    But, this blood showed a drop in Neutrophils (white blood cells that during an acute reaction elevate but during a chronic reaction for him, they decline- like his body is fighting something and depleted (chronically).  He's even been on neutropenic precautions at the hospital before when he's chronically reacting (because these levels look like a little boy susceptible to every illness- a body fighting hard to keep those illnesses out that it depletes it's stores, chronically).  His hemoglobin did pick back up a bit but his iron stores continue to drop and his protein stores are not picking back up.   The blood in his stool samples continues to worsen but the inflammatory markers are improved.   The GI and I agree that this is allergic colitis; that although it is easier to manage than enteropathy or enterocolitis (in comparison to the two), it is not something we can continue to subject him too- it will only continue to get worse; and any "hit" to his system will flare it so significantly, he will end up needing a blood transfusion.  We need to find a new path, a different path that he can thrive on....but where does that path lie?    

TPN is the answer from the GI.   New food challenges and time is ours.  Which one will be the solution, we are not sure.   

TPN would meet his nutrient needs, but TPN is not free of his allergens (corn and soy).  We could potentially leave the soy out (that is in the lipids-the fats), since he takes a diet orally- we can give him fats orally (which he gets in hemp milk and safflower oil); but we can not leave the glucose/dextrose out- it is the "rider" for delivery of the nutrients.  What does a corn allergic person do?  I'm not sure.  Maybe we will need to explore that, but first- we owe him to try a few other things....

But his allergy is a GI allergy and shouldn't be affected by the TPN ingredients, right?   Well, the whole time he was on TPN, he had villi his gut was getting "hit".   Also, he regressed, significantly.   I saw it happening while he was on TPN but I noticed it even more dramatically once he came off.  He has underlying sensory issues that come out (significantly) when he is reacting a food.   Well, on TPN they stayed around all day long and his body couldn't cope with it.  He began to be very specific in his needs, we had to keep the house dark, he didn't want anyone touching him, his language had halted and was starting to go backwards....everything was in a heightened state interfering with his quality of life, and ours.  It's not the ideal situation.  However, he did gain weight, his hair grew, he expanded his developments (even though his sensory issues kept him from practicing them, they were there).  I know that if his body can not absorb nutrients any other way, we will have to do it - we just need to know that is the right option.

Wednesday, August 29, 2012

Sharing our story....

It was a decision to make our lives visible, our FPIES experiences known.  It was my first observation in this FPIES community, that there were more blogs and support groups than there was medical pages.  Sure, there were those handful of FPIES papers- mainly from Mt.Sinai where much of the FPIES research has come from over the years since Dr.Powell first coined this syndrome that had been noted by other doctors as a severe inflammation of the entire intestinal tract, causing vomiting, diarrhea, dehydration, often lethargy and sometimes bloody stools and shock symptoms.  There were a few moms, many of them also active in the support group on babycenter, that had started blogs - to share these everyday experiences, how they learned and their tools for thriving through this rare allergy.  In June, shortly after our formal diagnosis, I began this blog outlining our journey.  The good, the bad, the ugly. I quickly learned that as I was learning, this blog was becoming more about what I was learning- my inner working thoughts of how I was tying what I was reading in journal articles to my own son.   So, I started a 2nd blog- My FPIES File Cabinet, a resource page of sorts.  A place to keep those "research" posts filed, while continuing to chronicle the experiences we were having with our little man and his FPIES.  Since then, I have also joined with other moms and founded The FPIES Foundation.   I am passionate about sharing our story, sharing my personal insights seen through my clinical nutrition goggles; but also about sharing resources, tools, experiences, and insights - not only from experienced parents but experienced medical professionals.

From June of 2010 to today, August 29, 2012; I have logged 385 posts (and yet I'm still months behind) and have had over 35,000 page views (wish I would've figured out how to put that little page ticker on my footer at the beginning); it's been humbling to see how many have followed and shared in our story.  Sharing our story has become an important part of this ride, as others have done before and beside me- it helps.

"When you stand and share your story in an empowering way, your story will heal you and your story will heal somebody else"  Iyanla Vanzant.

With the busy-ness of 4 boys and summer, the complexities of FPIES, and my work with The FPIES Foundation, I have been a little more absent from updates, but do promise they are coming.  I've been keeping a journal as we go through this muddy mess we've been in with little man's FPIES as he approaches and passes 3yrs.old and still stuck, still adding new triggers and not outgrowing old ones...the updates are coming!   Overall, he is doing well, growing and gaining weight and meeting developmental milestones, and continuing to teach us about patience and appreciation for God's simple gifts in life.

In the meantime, I would be honored if you would check out the new website for The FPIES Foundation  It is a 'labor of love', a resource packed with tools for new families and struggling families, a place to share stories and find support - a network of caring.  A place to come home.   We are not alone.

Monday, August 20, 2012

Lazy Days of Summer

Summer has kept us busy, just having all 4 boys at home is busy enough!  We are well into the lazy days of summer and enjoying just spending time at home. 

First day of school is Sept.4th, our Kindergartner has Meet The Teacher and then starts on Sept.6th- Kindergarten this year for him!  BIG step! He's excited, we're excited, he needs this in his routine, he needs the challenges and the routine base.  My mommy guilt cries for how his childhood has been molded by his brothers chronic health needs.  I know it has benefited him as well- he is empathetic and independent (sometimes TOO independent!) in ways his brothers weren't at this age but the 1:1 time I got with the two older boys just hasn't been there for him.   This is where I need to remember that everything that has been given to us, including Sam's challenging days, are God's Will and repeat to myself..."Thy will be done" many times a day; because I do simply trust in that -- even if my human nature takes over and my guilt or impatience creep in, trying to understand what role I need to take....which parts does He want me to do? Which parts do I leave to Him?  Which parts do I ask for help with?  These are my daily struggles....where my Faith meets my human nature.  

One morning last week, I woke up (as usual) to the sound of Little Man crying "Mommy, I need you"- he doesn't transition well and waking up from a nap or night is one of those times when he needs help with the transitioning; so if I don't wake before him- I am woken to crying out for me.  This one particular morning, I woke up still half in a dream...tried to pull myself out but it was "sticking" hard....I had been dreaming about Our Lady of Perpetual Help and I couldn't "shake" just kept repeating in my head.  If you are familiar with the image of Our Lady of Perpetual Help (or look it up), you will see that it is the image of Our Lady holding the baby Jesus.  I have the image, in a was my Grandmothers.  

The prayer is about needing help and remembering to ask Our Lady, the mother of Jesus, for this help- as she will advocate to Jesus for us.  So, of course we continue to pray to Jesus for assistance but we also ask his Mother to take our cares and needs to Jesus for us by praying to Mary.   We honor Jesus in this way, respecting his Mother.  The prayer and image are here:

It is again a reminder for me to ask for help, even if I don't know what I'm asking for (that is my downfall, I have a hard time asking for help and even harder time if I don't know exactly what I need).   

Maybe that is why I haven't been able to write an update....I have a hard time discussing (especially with those unfamiliar with the day in and day out of this invisible illness) because there are so many 'hidden' challenges- things that we as a family or Sam goes through that isn't "normal" but isn't something anyone can help with either.  His body wont' accept food as nourishment and yet he needs nourishment to live and thrive...that's the bottom line of this viscous roller coaster ride we are on.  And making the right choices for that balance is my constant, constant thoughts.  Food that makes him sick vs. avoiding foods with nutrients his body needs. Teeter-totter, tilt-o-whirl, roller coaster ride. 

Saturday, August 4, 2012

Gone Camping!

Summer has been busy, even though we aren't doing too much away from home- or not as much as I would like (or typically do) for the boys.   But, in reality, it is a blessing in disguise...the boys get to just "be", we got some quality time with them while little man wasn't so needy and just in general spending time as a family, finding ways to maximize the summer hours while still meeting little one's needs (of eating every 2hrs, not getting over heated,etc).  

We have continued to push the ProViMin and the recipe with the double hemp milk has helped his energy level considerably.  And lately, he is really sprouting in developments of language and other skills (writing, drawing,etc) and it's been fun to watch him learn more everyday. He's not been overtly behind on his development, the skills are there- just not enough chances to practice them between being sick so getting to see him just sit and draw, create pictures, learn new words and is fun and rewarding...and not lost on us. 

When I updated last, we were on our way camping.   We left on Friday after a lab draw.....hubby had went ahead of me with the 3 other boys to be there for the week, in a borrowed RV- from a close family friend (another firefighter family).  Without the RV, we couldn't consider taking little man- for 1). it was a week, a long time to be camping with a child with special dietary needs and 2). hubby would have taken the van (and a tent), so we wouldn't be able to join him for just the weekend, which is what we were doing now.   I drove up with little man, who slept much of the way (thankfully) on Friday.  

He was SO excited to see daddy and his brothers, and Papa and Gma and to BE CAMPING!!  This little boy LOVES the outdoors.   Thankfully, Saturday was "only" in the 80's or so and he was able to be outside most of the day, we took him into the (air conditioned camper) after lunch to get him cooled down and hopefully get a nap out of him but no going, once he had a bottle and was cooled down- he wanted to be back outside, and soaking up all he could.   Hubby ended up taking him for a drive in the van down the road later that afternoon because he was so tired and overheated and needed some downtime.   Sunday came and we weren't sure if we were going to go home Sunday or Monday morning but with the forecast for the 90's and he was already showing signs of overdoing it on Saturday, I didn't want to push our luck so we drove back on Sunday afternoon (a that took us more like 8hrs coming and going)- he again slept alot of the drive.   He was glad to be home and even more excited when daddy and the boys got home on Monday night.  

Wednesday, July 18, 2012

Bottle please, mommy

He ASKED for a bottle! Actually 3 times yesterday!  What music to my ears!  He asked for a bottle! (this is normal for him except in the last few weeks).   So, maybe we are turning a corner and he is healing or whatever it was that was the catalyst for this recent spiral is moving out of the picture?...

The other thing I changed was that I increased the hemp in his formula "recipe"- taking the recipe from the 18cal/oz to 21cal/oz (at least) - and he is feeling SO much better!  I did have to change the amount of ProViMin that goes in to the recipe (and haven't calculated out that yet), but this seems to be the break he needed in this spiral....he needs the calories more than the nutrients (so his body tells us) - and I had it the other way around.   The 'recipe" is too thick with either too much hemp or too much ProViMin (powder).   I will have to do some calculations over the next few days to see where he is now at with nutrients but I am just so relieved he is coming out of this "funk".   He has a few spots in the day where he is edgy but nothing compared to how he has been over the past 2-3 weeks.  Another situation where you kid yourself on how bad it is, just finding ways to get through it, until you're over the hump and looking back realize how hard it was - which means how "off" he was.   

I still am unsure what the catalyst was- whether it was the heat and then not getting enough to eat or if it was the work in the basement (mud and taping,etc) and the subsequent corn exposure it gave him.   His allergy is a gut allergy and we avoid corn ingestion like the plague.  In fact, he hasn't had a corn ingestion reaction (full vomit) since a multivitamin in Jan. 2011.  However, he's had corn contamination symptoms, and he's had an inhaled corn reaction (vomit).  This concerns me that his corn allergy is worsening, or that he has more than FPIES going on (which we have suspected all along anyway) - not that other kids don't experience inhalant FPIES symptoms as well but it is more commonly heard of with EGID (eosinophlic gastrointestinal disorders) - which are very close in nature to FPIES.  In fact, I've often wondered if he doesn't have some form of an EGID that has gone undetected because of how difficult/specific it can be to diagnosis - especially when we keep his diet so tightly controlled.  I don't know but inhalant allergy symptoms sure do bring things to another level.  And I've been noticing a pattern of this in the past - days when hubby mows the lawn and little man wants to ride on the tractor- he inhales all those fumes (yep, ethanol = corn), times when I've used a different laundry detergent and it has a perfume smell, he gets very pale/sheet white on these days...the smell alone - with all the corn, is making him sick.   

I asked this on one of the corn free forum's I follow and was actually a little surprised by the answer- how many people had actual experiences with house remodeling....and ER visits because of how severe it set off their corn allergy (people on these forums have varied degrees and forms of corn allergy from your typical allergy of hives/wheezing/etc to GI distress to neurological, emotional/mental effects,etc).  I follow these groups because it is at least a starting point to helping me learn and keeping our son safer.  And I am so very grateful for them. 

The dietitian let me know today that she was low on her numbers for his calories/ounce in his formula recipe- wow, that is a relief!!  Although it is still only 20cal/oz, it is better than the 18 she had mistakenly calculated it at.  She thought something must have been off so she went back and recalculated it.   She has a program for calculating it but the Hemp seeds aren't in that program- so she has to add those in by hand - and she was doing a full analysis of EVERY.SINGLE.NUTRIENT.   I'm glad she double checked, it makes me feel a little less sad about how low he went for those days - either because of the heat or because he was feeling poorly from the potential corn-y exposures....or (and likely) a combination of both.   

Whatever it was, we seem to be over the hump - and I know the prayers that went up were pivotal with this.  God has been trying to teach me this....that the answers to my prayers don't always come from my whisper to His ear but instead from my whisper to the hands (and knees) of family and friends....showing us that we are never matter how isolated we feel when no one knows how to help when he is sick.  

We are blessed. 

Saturday, July 14, 2012

That Mommy Instinct once again...

Before little man started going downhill again, my mind was going towards next steps.  I still wasn't feeling quite like ProViMin was a sure bet just yet- until we saw some follow up labs and weight checks,etc. but did want to start preparing for some food trials- to build his diet, using the tube if possible -- for the trials and to get re-acclimated to the tube to utilize it to get his caloric needs in without obsessing about every ounce of formula and having to choose eating over daily activities.  

We couldn't stay with our heads in the sand for forever, it was time to move forward.   So, I had made phone calls to get a follow up with the dietitian, and a follow up with the GI.  I also called home health to get them on the radar that we would want some assistance with getting Sam used to his tube again.  A week went by and no one called us back (no one from the GI office).  Hubby made the follow up phone call- to see if we could get some attention.  By now, things were starting to fall and the trials were getting further from my mind....

We finally got the follow up appointments scheduled.  But now, we have new things to discuss with everyone because I'm noticing he is not picking up on his eating- even though the heat has broke.  I did a 3day "snapshot" check of how many ounces he was taking and it was around 28-32....I wasn't positive how many calories/oz his formula was (with ProViMin mixed into hemp milk) and was thinking it was around 20cal/oz....this is not enough calories.   Maybe this is why he is so tired?  But then, why doesn't he eat (drink) more?  I am offering a bottle every time I turn around it seems- and realistically, it's every 1.5-2hrs, and he accepting them every 2-3hrs. Something just is not right.   It appears (from his symptoms) that his anemia is coming back (low appetite, low energy, and disturbed sleep), but why? 

We went to the Dietitian appointment this week, and learned his formula is more like 18cal/oz.  I almost cried.  He is hungry, starving himself...but why?  Why is he starving himself?? The other time he self limited was when the food hurt him.  More specifically, the formula.  He did it with Elecare- starved himself into a hospital admission when he was 7mo.old; he did it with Neocate before we switched to Hemp milk, he was doing it with Alimentum and now it the ProViMin or?? Either his appetite is really off because something is "disconnected" (his anemia or his carnitine or maybe even his thyroid?) or he is reacting to the ProViMin so he is self limiting- taking only when he is so hungry he can't not take it.   When you need ~1500 calories/day and instead you barely eat half that- what would cause that???  

He has a lab re-check in a week and a half but we decide we need to request to move it up, he is symptomatic and another week and a half he may need to be admitted to the hospital if we don't figure out how to help him.  

The lab draw was yesterday.....and it is concerning.   His anemia is back (why??), his protein stores are low (why??) and his Vit.D levels are low.  Well, an easy answer would be that he isn't getting enough but with the ProViMin being a powder - even though he's only taking in 30oz/day- he still gets the better portion of his nutrients from the ProViMin....certainly enough not to cause this.  Our Dietitian recommended we check a few other nutritional labs as well and they are within normal ranges so why would some be low and some be fine if he wasn't getting enough nutrition?  The answer seems to be that he isn't absorbing the nutrients, the iron is the same nutrient he malabsorbs when he has inflammation;  that the inflammation is in that place in his small intestine. And with protein stores being low, despite getting adequate protein intakes....he is malabosorbing.  But, why?  What is causing it?  Is it the accidental corn exposures?  Is it the inflammation from Alimentum not healing?  Is it from the ProViMin?  We don't know....we are hoping the GI will have some idea's but worried she may not.  

The pediatrician's recommendation is that he is clearly not getting enough nutrition on his current plan, and that he needs to be back on the Alimentum since that provided the nutrition he needs.   Quite frankly, this was poor advice.  For one, the ProViMin does meet all his needs.   The Dietitian has charted this, that he needs about a cup of ProViMin/day to meet 100% of every nutrient.   He is only getting 1/2cup right now (at best) but still getting a good amount of most of his nutrients.  The numbers don't add up....he should read the Dietitian's note so that he can give informed recommendations, to help us make informed and the best-interest-for-our son decisions.  The Alimentum took over 50oz/day to meet his nutrient requirements-- and he wasn't drinking that much...and yet he was malabsorbing even more.  He was not tolerating the Alimentum, and his body was rejecting it as quickly as it was taking it in....causing more damage to his stores than if he wasn't taking it at all!   How do we know this?  His behavior, his mood, his appetite, his sleep, his crying, his pale skin, his blue around his lips, his labs, his dramatic decline in iron stores and hemoglobin, his terrible-terrible looking and painful, leaking tube, his no weight gain, his volume-ness stools, and the last telling sign was the analysis of those stools, which revealed a high alpha1 antitripsin level and a high calprotection - indicating malabsorption of proteins and significant inflammation and enteropathy.   

His color improved on the ProViMin, his mood, his behavior.  His diapers have not.  My suspicion is that the Alimentum caused significant villi damage and that the ProViMin was working- when I was able to get enough in him, but with the heat and his decline in intakes, he started falling behind....and now we're seeing the (quick) effects of that.  

Either that, or he's reacting to the ProViMin- something subtle...  

So, the plan?  We need to push the ProViMin and see if things get worse or better.   He won't drink more so we will need to use the tube- it's make it or break it time with this tube.  We had our home health nurse come by on Thursday to see if he would allow her to check on his tube and even use it - and he did!!  It took a bit of coaxing but it ultimately went smoother than any of us anticipated!  We are encouraged that since he now doesn't have constant pain with it, that he can start using it again.   We will plan to give him whatever feeds he needs above his formula intakes, we hope to be able to do this at home but worry that the GI will want him admitted.   When he first came home from the hospital after having his Gtube surgery, he had the extension hooked up 24/7- there is a "button" in his stomach wall, that gets opened and an extension- the tube- hooked up to it for 'feeds'.   We took that extension off because it was pulling (and possibly preventing healing) and the tape was causing a reaction to his skin (painful).  Getting him hooked up for feeds since has been a challenge.  So, we may try this method again for a few days/week to see if we can get him back on track....or it will make it clear that ProViMin is a problem. 

Friday, July 13, 2012

Is it just the heat?

Little Man had been doing well, then the last week of June brought really, really hot days....and we tried to stay cool; but it wasn't enough.  His appetite tanked, and it became my full time job (not that it isn't already) to push more and more with the bottles.  I was worried that he wasn't even taking enough to stay hydrated, much less for his nutritional needs.   And I prayed for a break in the heat and we kept the air on and kept him inside and tried to keep our activities low key.   And I wondered why he was responding so negatively to the heat? He would sweat within 2 minutes of being outside, and 15minutes would have him drenched in sweat!?! 

We enjoyed his brothers 5th birthday party- a backyard BBQ- and he was doing primarily well that was the days that followed that he started to decline.    Was it the heat?  Was it being too busy all week preparing for the party and having church school and going, going?  Or, did he get a corn exposure?   

Something isn't right because he clearly started going downhill that week....maybe he didn't recover from the IV iron (the dextran that is corn), maybe his body isn't recovering from the Alimentum inflammation?, maybe it's something else in his diet, maybe it is the ProViMin,...

I'm getting of the last times we spoke to our GI she relayed that she was "getting frustrated" that we don't understand why his gut doesn't function properly; and that she wanted to have him admitted (somewhere, not necessarily here) that scares me.   It scares me to have him admitted here because they always set him back, it seems no one even tries to understand his FPIES and the mechanisms that happen in his body. And getting admitted someplace else?   Where?  Where could we travel, be away from the boys, spend time away from my family, and work, and put him through more and more tests and get actual real help and answers?   Where??  Where would we go that we don't get the overwhelmed door shut in our face, travel how far to say there is nothing else to do, nothing else to help him....

So, with all of this weighing heavily on my mind, and little man clearly not getting better- even with the break in the heat, his appetite was not picking back up and his energy was really low.  His sleep was getting more out of whack- not waking in his sleep in pain, but unable to fall asleep or sleep very long. Something is off, what is it?   

Saturday, June 30, 2012

Seemingly Overnight....

Our Little man went from infant/toddler to preschooler.   When did this transition occur?  Was it his 3rd birthday this month?  No, it was a little before that, but not much.  Seemingly overnight.

Three years is when studies show many FPIES kids begin outgrowing their triggers (allergies) if not before.  We are not there yet as Little man is still reacting to new foods, he is still trying new foods.  However, we do see the sunrise through the long tunnel - it's there.....the length of the tunnel we still don't know.

We pray this is how his FPIES will come to and end as well, seemingly overnight.  We have no indications of when that transition may occur either.   We rest in our faith, and when that rest is weary- we pray for strengthened faith.  A faith to not know the answers, or need them but simply to trust.   A Faith to trust in the will of God.
Complete Trust in God.

Saint Francis de Sales (1567-1622)
Do not look forward to the changes and chances of this life with fear. 
Rather, look to them with full confidence that, as they arise, God to whom you belong will in his love enable you to profit by them. 
He has guided you thus far in life. 
Do you but hold fast to His dear hand, and He will lead you safely through all trials. 
Whenever you cannot stand, He will carry you lovingly in his arms. 
Do not look forward to what may happen tomorrow. 
The same Eternal Father who takes care of you today will take care of you tomorrow, and every day of your life. 
Either He will shield you from suffering or He will give you unfailing strength to bear it. 
Be at peace then, and put aside all useless thoughts, all vain dreads and all anxious imaginations.

Thursday, June 28, 2012

The G-Tube....the other 10%?

What are we doing with the G-tube?   Does he still have it? Why, if we're not using it?   Why, if he doesn't need it?  

And, then my own guilt questions:  did we make the wrong choice for him?  He's now drinking the formula, does he need the tube at all?   We put him through so much and the benefits have been so few from the tube- do we stop now and take our losses or push things and hope we can turn it around?  

When making the decision for the tube, what we were looking at is a child that struggles with weight gain, struggles with foods, gets his nutrition from a formula- that he will only drink from a bottle (at a certain temperature with minimal distractions), that he would not drink the supplemental formula (at that time) that he needed to not have TPN, that we could utilize it to do food trials in a child that struggles with textures and new foods that might make him sick, that we could increase his (and the families) quality of life by taking the stress and worry off of how much he drinks from the bottle or nibbles from his few safe foods and allowing us to bolus feed him if/when he doesn't consume enough calories or nutrients from safe foods during the day to get him through this illness thriving.  

We made the decision to go ahead with the Gtube, to get rid of the NG tube so he could still get the formula.   The formula that caused enteropathy in his intestines, the formula that he then started drinking in his bottles, the formula that we now have put on the reaction list, and switched to another formula that he does seem to be tolerating and is also drinking in his bottles.  

We were encouraged by all his team that this was the right decision but that it was ultimately our decision (that we could just continue the NG tube for ~6mo and hope that in that 6mo.,we could move his diet up enough to not need any formula or tube).  We did not want him to have the NG tube for 6mo- this was very hard on him because he couldn't play with his brothers.  A Gtube would become part of him and he could play and be a 2/3yr.old during the day;and have the "back up" for feeding that he needed.    We were encouraged that "90% of the families that make this decision, 6mo. after the tube is placed relate that it was the best decision they made for the care and quality of life for their child". 

So what about those other 10%?.  Right now, we're that other 10%....but I don't want to stay in that 10%- so how do we change that?   Well, he's drinking the formula so that reason for the tube isn't a priority anymore- although it would be an increase of his quality of life to give him bolus feeds of this formula so he is less dependent on the bottles and increased flexibility of our schedule and his playing (the job of being 3).  He needs a lot of the formula, at this point, to restore his nutrient levels and if he has any future food fails- he will need increased amounts of it then too as villi damage (small intestine) is part of his FPIES reactions. The tube would also help keep him hydrated should he have a vomit/diarrhea FPIES reaction (if we pushed a food that far). 

The Alimentum RTF caused problems before the Gtube was even inserted.   He woke up from surgery with a cough and fever, green pussy drainage from the tube from day one and granulation tissue very early on.    The green, yellow, and brown drainage never let up.....until we backed off on the Alimentum.   The tube was getting too painful for him to allow us to use it, and the burning off of the silver nitrate caused a strong aversion sense to having the tube.   So, we backed off of using it....this is what helped us see that the that symptoms were correlated with the Alimentum- but we still weren't sure what from.  The longer breaks we took, the more clear that became.  But now, he was already so averse to the tube....

If we can get home health to help us help him be comfortable with USING his tube again and then we can use it for his bolus/supplemental feeds and for food trials as we expand his menu and catch him up to where his menu should be by now- it will make it worth it...I guess I'm giving conditions of MY coping with this decision made for him....that might not be wise, as none of this may work out at all but I have to at least try. 

Wednesday, June 27, 2012

Murphy's Law

It seems like whenever I saw something, it happens.  I was dragging my feet (or burying my head in the sand) to make phone calls to the care team.  Any mom of a chronically ill child will relate that it is a lot of work to coordinate everything, and sometimes you just wish someone could help with that.   In the past, I've had a misconstrued idea of what that entailed for a chronic perception was that preventive care was the goal.  That, with known chronic issues surrounding a health illness, it would be beneficial to stay on top of problems that repeatedly come up, to steer care in the direction of health.   I'm serious, even if that sounds like a sarcastic tone (those reading this that know better)- I honestly had an expectation far from the one we experience with little man's chronic health needs.

So, our complex care nurse called yesterday morning to let me know that our pediatrician looked at little mans labs and was very pleased with how they looked that indicated he responded well to the IV iron.  She then relayed that "he would like to see him back on the Alimentum as it seemed to provide the necessary nutrition while working on additional foods by mouth".  I literally chuckled outloud...I had to catch myself and back up because I didn't mean to sound disrespectful and had to remind myself that the Pediatrician had told us he would be on on vacation this week- he is checking these labs from home out of his concern for our little man and follow up....and he must've just forgotten that we are not on the Alimentum, that that was causing enteropathy and caused this dramatic decrease in iron and hemoglobin.   So, I told her that yes- we would continue the ProViMin but he would not be getting the Alimentum.   I go on to tell her my thoughts on where he is at right now and where our plans are for him in upcoming weeks, who I need to call or coordinate discussions with....saying, I am also very pleased that his labs look so good- that his body responded so well to the IV iron and that he must be tolerating the ProViMin well too because he has never responded this well to the IV iron before (ProViMin helping him stay ahead of the line).  I am very encouraged by that.  This is also because we have been pushing the bottles- so that he gets as much of the ProViMin that he can during the day, which means less eating, even of his safe foods- because he isn't as hungry because I've just had him take a bottle (every 1.5-2hrs pretty much around the clock).  The ProViMin is a powder and it is mixed with his hemp milk and a few weeks ago, I asked the dietitian what the iron content in it was -- he gets over 2-4x the iron his body needs (if he didn't have decreased stores, she wasn't positive what his needs would be to replenish stores and deferred that discussion to our GI), but also that it provides well over the protein that he needs in a day as we are hitting those numbers well (which is good because of the enteropathy, he was dumping proteins in his stool and his stores were low).   So, we've been pushing the ProViMin to get these (iron and protein) levels restored, as long as he tolerates it; and to allow his gut the chance to heal from the Alimentum so we can do food trials again soon.   We need a follow up with the dietitian to find out where he is at now that I have the recipe of the ProViMin and hemp milk and how much he takes in a day all worked out and to help decide a list of foods for the upcoming trails. 

I also discussed how he hasn't been sleeping well at night and having some moodiness during the day that we aren't sure what it is from but doesn't seem to be from foods that we can corelate so I was curious if the genticist thought if it was from his low carnitine levels again.  Carnintine is an amino acid found in meats and dairy - which he does not get; it is supplied in formula's but there is none in hemp milk....also none in TPN (which is when we first discovered he was carnintine deficient).  Carnitine helps keep blood sugars stable and so with a low carnitine- maybe his body isn't regulating his blood sugars as well.  The role of carnitine and the effects of the deficiency is much more complex than that but that is what we saw most from Sam being affected by being deficient.   

We also need a follow up with the GI doctor- to discuss further this enteropathy and how he is doing now, and to get a letter of medical necessity for the ProViMin so we can see if Insurance will help cover the costs; and discuss next steps regarding foods trials and the tube.  

I also need to call the home health agency we work with and find out if they can come out for some regular visits to see if we can get Sam acclimated to his tube again - utilizing nursing support initially and then adjusting to us using it and him being comfortable with that.  Even if we just do 1-2feeds/day and we do that to give him the missing calories or nutrients in his day - so we can have less focus on a bottle every 2hrs, and more focus on allowing him to EAT (safe foods and trying new things).   And to do this- we would use his tube to give him a "feed" with the nurse but to also trial some foods- to expand his choices on his menu (and then later work on getting him to eat these foods that we determine as safe).  

He also needs a weight check and his 3yr.well child visit.  

I relay all of this to our complex care nurse.   She says, ok and goodbye.   

One message, one internal note cc:d to all his providers for her to send to almost all of his care team would save me multiple phone calls and get everyone on the same page at the same time, coordinate everyone's insights and recommendations and would be the ideal thing for him in this patient-centered care environment we are supposed to be belong too.  But, no- she's only there to pass along the message from the Pediatrician.  I know it's all my job, he's my son- I just can't help but wish we had more help from time to time; so I could be more mom and less nurse. 

Well, at least I ran through my own mental list I can get started some phone calls.....head out of sand- here we go....

Monday, June 25, 2012

Labs follow up

When we saw our pediatrician a few weeks ago, we had decided that the Hemoglobin of 8 (normal is 12) was cause to watch things closely.   That is until 2 days later and the Ferritin (iron) levels came back at an all-time low for him, at 2 (normal is above 24, but he's rarely been that high ever). So, our GI changed the plan and we went ahead with the IV iron infusion as he was symptomatic and we really wanted him to feel better and stop that cycle (while praying the new ProViMin formula was doing it's job - not only restoring his levels but not reacting to it causing him to dump the proteins (and malabsorb vitamins/minerals).  The re-check was this Thursday- a week after getting the IV iron and 2 weeks after his last check.   

And it was GOOD news!!  His hemoglobin is now up to 11!! From 8 and within a week- this is a good sign that the IV iron helped and hopefully that his body isn't reacting to the ProViMin.   His Ferritin came up a whopping 17points and is now 19!!!  WOW!  Although this could be a "false" rise as it will appear higher right after IV iron therapy.  I am SO glad we got the IV iron for him, despite the week + symptoms he has been having from the corn in the dextran the iron is delivered with, his hemoglobin is up- he is feeling better, appetite is improved, and sleep is improved. Although he is still tiring easily and having mood swings (usually only when he is overtired and a lot more likely in the evening) that are not at his "baseline" I am still playing the guessing game to what is causing that.  I don't know that it is related to food; for one thing- we aren't doing any big trials....except the ProViMin.  

The other thing that I am worried about is another lab that we got checked, from an appointment we had a few weeks ago with the geneticist - a recheck of his carnitine.   He is low again but not low enough to trigger a clear deficiency so we haven't gotten a call back but I am wondering what his symptoms now correlate with this lab value....and what we should do about it.  The geneticist did say he wanted to supplement it (although admitted it may be difficult finding one that is corn free) because he fears he just isn't getting it in his diet.   I'm not sure why the formula wouldn't have it,but know his hemp milk doesn't (carnitine comes from meat and dairy sources).  We still haven't gotten to the bottom of this and it is either simple (not getting the source) or it is complex (a metabolic disruption disorder).  For now, we need to concentrate on finding a safe source of carnitine for supplementation as carnitine has a role in gut health.  

Something isn't quite right, just not sure what it is or if we are moving in the right direction with each day or getting further away....we need some follow up's with GI and the geneticist and he is (over) due for his 3yr.well child visit.  But, I just want to enjoy being at home and summer starting and spending time as a family, and celebrating his brothes 5th birthday, and going camping....and FOOD trials, and not dealing with medical issues and appointments and more lab draws and interfering food trials for supplemental trials.  So, I guess I've been playing Ostrich a bit.   Maybe tomorrow I'll start to make some calls....for now we're going with the flow- taking time to cuddle and lay low when he needs it and making the most of when he is feeling better. 

Sunday, June 17, 2012

Happy 3rd Birthday!

The day before his birthday, I told little man that the next day would be his birthday celebrating day and the plans I had for the day (church, lunch, parade, nap, cake/presents/dinner, campfire, and fireworks).  He listened intently and looked at me and said, "play lego's with daddy?".   Request granted buddy, you can play lego's with Daddy. 

We had fun at the parade, he loved all the fire trucks, and marching bands.  Then we came home and had a (late) nap- it was a HOT summer day and we were all tired while I prepared his "surprise" (he didn't know he was getting cake with frosting!).  So I set up his presents and cake and decorations while he napped.   This was right when Hubby got a fire call page- there were a few large fires and due to the nature of the fires and the heat, they were in need of extra off-duty firefighters to come in and be ready.   So, off he went.   Little Man was disappointed when he woke up from his nap and daddy was gone- he was excited about his surprise (presents and cake) waiting for him but more excited when I said we could take it all to daddy at the fire station! (he got assigned to help man a station)....he was at the station that is literally down the road from our house.   So, presents and cake went with us to celebrate with daddy (not the first time we've celebrated at the station). He had a good birthday and was a happy little boy who got 2 lego sets!   He LOVED his chocolate frosting cake!!! He licked the frosting off of all the cupcakes (which were really just his regular millet muffins).  The chocolate frosting was made from a recipe for chocolate syrup = oil, maple syrup, and cocoa- I boiled it and it thickened up nicely= frosting!  

His birthday was a quiet day at home....well, that was what it was SUPPOSED to be!   It started out quiet, but then a stool sample needed to be taken downtown to the lab...last week his GI doctor ordered some stool studies to be done- they have to be taken in when the lab is open and within 30minutes of the sample being "fresh" that didn't happen over the weekend so I wanted to get this sample in right away.   I decided a trip to the toy store could be arranged for this birthday boy to make this outing NOT about going to the lab!   Off we headed and got the sample turned in and off to the toy store but the stores weren't open yet (9am), so we went to the dollar store instead where I let him have a basket and go shopping.   Later, we went to two of little man's favorite parks before heading home for nap time.   We picked up the boys from the catechism car pool and headed home to play.  Little Man hasn't been feeling well, but he wants to play- so he will be playing nicely for a few minutes and then he will turn and just start crying over the littlest things....clearly he is just tired and feeling crappy.  I was ready for the day to be done (we still had the fireworks to do another day this week when daddy is home!).   We were sitting and relaxing downstairs and I was checking the results of that stool sample that I had turned in that morning (via an online patient portal) and found that his stool actually matches the symptoms he was having on Alimentum...bittersweet....we haven't talked to the GI about it yet so will have to go more into that in another post after we have the chance to discuss it more.  

While I was reading through this report, little man was sitting at my feet building a "fort" (more like a beaver dam)- they like to pile blankets and pillows on the floor and crawl around in and under them.   Mudpie #3 started jumping from the couch to this pile and before I could stop him, he was mid jump when little man moved to get up and his brothers knee hit his head.   At first, I was just upset at his brother for hurting him- who was finally relaxing and playing nicely and then saw some blood so rushed him upstairs to get a better look at it....yep, this is about when the panic set in because he SPIT HIS TOOTH OUT IN MY HAND!!  AGH!!  What???!!!  WHAT?!    I immediately called hubby- should I take him in?   They didn't do anything the last time we took him in, and this too looks like a clean break.   But WHY?  His brothers knee did not hit that hard- how did it knock out a TOOTH!?  Is there something wrong with the strength of his gums?  Or is it just because that one got knocked a little loose and the gum was still healing, from last week when he knocked the other one out?   Maybe.  It, of course, bled a lot but the bleeding stopped fairly quickly.   We went to visit daddy at the station to help him feel better and he is handling it like a champ (it's mommy that is still a bit freaked out by it). 

What a way to celebrate a birthday! 

Saturday, June 16, 2012


I made this video (uploaded to YouTube to share) to reflect on Sam's year for his 3rd birthday...from baby to little man for sure in a year!  A lot has changed and in some ways we've come a really long way!!

I originally uploaded the song "Fighter" by Gym Class Hero's but copywright laws restrict me from sharing that version online - plus Mudpie #1 (age 11) says it is not an appropriate song because it has the word "hell" in it.  

(feat. Ryan Tedder​)

Just waking up in the morning
And to be well,
Quite honest with ya,
I ain't really sleep well
Ya ever feel like your train of thought's been derailed?
That's when you press on - Lee nails
Half the population's just waitin to see me fail
Yeah right, you're better off trying to freeze hell
Some of us do it for the females
And others do it for the retail

But I do it for the kids, life threw the towel in on
Everytime you fall it's only making your chin strong
And I'll be in your corner like mick, baby, til the end
Or when you hear a song from that big lady

Until the referee rings the bell
Until both your eyes start to swell
Until the crowd goes home
What we gonna do ya'll?

[Chorus - Ryan Tedder]
Give em hell, turn their heads
Gonna live life til we're dead.
Give me scars, give me pain
Then they'll say of me, say of me, say of me
There goes the fighter, there goes the fighter
Here comes the fighter
That's what they'll say of me, say of me, say of me,
This one's a fighter

[Verse 2]
And if I can last thirty rounds
There's no reason you should ever have your head down
Six foot five, two hundred and twenty pounds
Hailing from rock bottom, loserville, nothing town

Text book version of a kid going nowhere fast
And now I'm yelling "kiss my ass"
It's gonna take a couple right hooks, a few left jabs
For you to recognize you really ain't got it bad

Until the referee rings the bell
Until both your eyes start to swell
Until the crowd goes home
What we gonna do ya'll?

[Chorus - Ryan Tedder]
Give em hell, turn their heads
Gonna live life til we're dead.
Give me scars, give me pain
Then they'll say of me, say of me, say of me
There goes the fighter, there goes the fighter
Here comes the fighter
That's what they'll say of me, say of me, say of me,
This one's a fighter

Everybody put yo hands up
What we gonna do? [x7] ya'll

If you fall pick yourself up off the floor (get up)
And when your bones can't take no more (c'mon)
Just remember what you're here for
Cuz I know Imma damn sure

Give em hell, turn their heads
Gonna live life til we're dead.
Give me scars, give me pain
Then they'll say of me, say of me, say of me
There goes the fighter, there goes the fighter
Here comes the fighter
That's what they'll say of me, say of me, say of me,
This one's a fighter

'Til the referee rings the bell
'Til both ya eyes start to swell
'Til the crowd goes home,
What we gonna do kid?

Wednesday, June 13, 2012


Little man got his IV iron infusion 2days after his 3rd birthday at the PITC (Pediatric Infusion Therapy Center).  It is a 6hr.infusion because the iron has to be infused with a sugar- sucrose or dextran.  We've tried the sucrose but that has given him bloody stools.   FPIES is defined as a delayed food allergy of the gastrointestinal tract, so doctors often struggle that allergens via IV or on the skin, or even airborne, could cause reactions.   We've seen them all when he is exposed to corn.  It makes me wonder if he will ever outgrow his corn allergy.....  We keep learning as we grow with it, on ways he is "corned" (as it is called in the corn allergic communities).     Did you know that many corn allergic can never go to a movie?  or shop at Target?  Or walk through the detergent isle in the stores?  The strong corn smell is too much and induces an allergic reaction.   I think I've seen these in him instinct tells me I have....but I'm still trapped in that "that is crazy" feeling fighting my instinct.   This past weekend, hubby bought some scented laundry detergent- which I have been avoiding but didn't tell him that- Little man's color was very pale that evening as the house was engulfed in fumes from the laundry scents.  Today, his color was off again - he hasn't eaten anything new- but hubby used some strong cleaner on some stubborn spots on the living room floor and also on the kitchen sink.     

Now, most of these reactions don't completely interfere with his quality of life and can go almost undetected (hubby doesn't notice them like I do); but it is hard to differentiate if the symptoms are from a new food we are trialing or being "corned" so we have to be careful --- even if it isn't going through his gut. 

So, the IV iron sucrose is a 45minute infusion...would be so much easier if he could have that but it is not safe and the benefits do not outweigh the risks.   The IV iron dextran produces symptoms but they are manageable and the benefits of the much needed iron outweigh the risks of corn-tamination from the IV dextran.  But it's been a long week....working that dextran out of his system is taking a long time.  He isn't sleeping well (won't even sleep in his bed), has stomach aches, doesn't want to eat but will take his bottles (thank goodness), is tired a lot- achy maybe? touchy and moody.    Over the week, we played the guessing game- did he get something, is it from this or that, is this getting worse or better, is his iron still critically low?  But now it is clearer to see that it was all from the dextran and I'm feeling de-ja-voi, that we've been here before and even discussed it with the GI who agreed that we need to try and avoid the IV iron (ie, not let his iron stores get so low so that he needs it).   But with a Ferritin of 2 (normal is 24 and up), we had no choice unless we did a blood transfusion.  

We got to the PITC and Little Man knew exactly where we were....and wanted to go home.   He was very brave though and got distracted by watching "Cars" while we waited for the lab to show up to get his IV started.   We were happy to see one of our favorite nurses there too.  We were giving her an update on how he has been (they love to see how much he has grown and changed!).  She was talking to him and trying to distract him as they got the IV ready and he had his SuperMan pants on (pants with a patch) and she asked if he was Superman.  I told her how one day, he looked at me and said "Sam Ironman, me Ironman?" ;)   She thought that was cute too...and replied...."well, today he is".   

The day was long but hubby and I split the "shift"- I take the first hours where he gets the IV and gets settled in and then hubby takes the rest, where they can play and nap and get through the long 6hr.infusion.

Sunday, June 10, 2012

"Star Cake"

Merry Muffins:

(a base I use for cupcakes, cakes, cookies, etc. adapted from Baby B's Mama
Mix: 3/4cup puree peaches with 3tsp baking powder (corn-free) stir and let “foam” sit.
AND/OR: 2-3Tbsp. hemp hearts/seeds with 2Tbsp. warm water
Combine dry ingredients::
2/3 cup millet flour
1/4tsp. baking soda
7Tbsp. safe oil
Mix peaches with dry ingredients and bake for 8-10minutes at 375degrees.

643 calories, 3.75 g protein, 44 g CHO and 55 g fat