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.

From CatholiCity 

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.

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. 

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 illness....my 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 well...so 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 now...so I can get started some phone calls.....head out of sand- here we go....

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"....so 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. 

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"....so 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! 

Fighter

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.  

Lyrics retrieved here: http://www.azlyrics.com/lyrics/gymclassheroes/thefighter.html

"The Fighter"

(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

[Bridge]

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

[Bridge]

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?

IronMan

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 too....my 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.

"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 

Anemia....again

Little man has been hovering over his spiral for a few weeks now and helping him on our own has been just out of our grasp- right at our fingertips but not enough for us to get a good hold on it.  

This past weekend, he was really showing signs that his anemia was back and his Gtube was really hurting him.   So, by Sunday we decided we needed to call in right away Monday morning and get him evaluated further- for both anemia and Gtube issues (not that they are directly related). 

We call and leave messages with the GI and try to get in to see if his Pediatrician on Monday.  There are no appointments available but he can see him on Wednesday morning and in the meantime, the GI ordered for him to have an Gtube study (barium contrast upper GI) and some lab work to assess his anemia.    So, Tuesday afternoon was spent at these appointments.  

We got some of the results that evening, not good.....Hemoglobin (normal is above 11) is back down to 8.   Not good (down from 12 a few months ago).   It explains a lot though, and was what I expected - as he has been tired and had disturbed sleep and now lately, his lips are the color of his cheeks, which is not good because his cheeks are not rosy.   

We go to the Pediatrician appointment on Wednesday morning and he assesses that yes, his skin/lips/etc are  pale but his heart rate is good and his activity level right then in the office was good.   So we decided that at this time, it was worth trying to see if the ProViMin would  help him catch up and replenish his stores.  We scheduled a follow up lab check for 2weeks and said we'd be in touch.  The other good thing about his appointment was that his weight is UP!  For the first time in months, his weight is UP!   Alimentum RTF formula did nothing for his weight and just a week on ProViMin and he's gained a pound a half! He is now 31#8oz.    We all agree that we don't want to see him HAVE to get another blood transfusion and would prefer to avoid IV iron infusions as well.   IV iron is infused with a sugar - dextrin....which comes from corn.  It doesn't go through his gut but his body still reacts to it- so we would rather avoid it....if we can.   

Later that afternoon, the rest of his labs came back- another lab they checked was his Ferritin, which is the iron stores in his blood- we needed to find out if his hemoglobin was dropping because of blood in his stool/losses alone or if his stores were also affected because the last time they were checked, they were already low.   Now, they are very,very low.   We are going to have to intervene and not wait to see if the ProViMin will restore his stores quickly enough.....realizing that his iron stores are so low, we know we will need to do something more aggressive to help him.  

His GI called this morning and confirmed those are her thoughts and recommendations, so now we are waiting for her to connect with the Pediatrician and come up with a new plan (his plan yesterday before the Ferritin levels were back were to do a wait-and-see approach (to which we agreed to).   But now realizing that his iron stores are so low, we know we will need to do something more aggressive to help him.  

The GI doctors also mentioned that she is really upset that he is bottoming out again, that she doesn't understand why he didn't tolerate the Alimentum RTF- or why he "seemed" to tolerate it for a few weeks and then didn't.   I clarified to her that I don't feel he ever did tolerate it, we just wanted him to so badly so we kept pushing it -- and that he CAN be stable if we didn't have to keep pushing foods that his body is not ready to accept- full blown FPIES or not, he goes backwards faster if we push him when he shows us signs that he isn't tolerating something- if we push him just to get to vomit because that is the only evidenced based signs.  IF the ProViMin continues to work out, I don't want to push him - I want to just take things slowly because he should be getting all he needs in the ProViMin and if he needs gut rest or time to heal or a food that is not tolerated taken out of his diet- then we need to listen to his body.  Without a source of complete nutrition, we have not had that luxury.

The GI starts talking about long term hospital admissions, extensive tests and consults at other facilities with other more FPIES familiar GI doctors....she admits she is frustrated and losing her patience and needs to just know if his gut is use-able or not, or if he needs long term TPN to thrive....   

These thoughts overwhelm me and we ask all prayers that Sam will tolerate the IV iron infusion and that his body will have the catch up it needs and he can thrive on the ProViMin, and we can take things slower.   

Oh, and the tube?  Both the Ped and GI do not want to discuss taking it out yet....even though surgery has said that is their recommendation.   One good thing is that it has stopped oozing and draining and we noticed a significant correlation with the Alimentum feeds and intolerance to the increase of the gtube drainage.   

Toothless

No, not from the movie "How to train a dragon".....

Last night, we had a non-FPIES trip to the ER.....We had just eaten dinner and the boys were playing in the driveway and garage. Hubby was sitting outside with them, reading a Lego magazine the boys would stop every few minutes to look at the next page in the magazine. I was in the house, watching them while doing the dishes. Little man was getting fussy, so I went to make him a bottle and then hear a crash and a "Oh no, he fell" from one of the boys. I go to look and hubby is assessing the dripping blood on his face. Mudpie#2 yells out "he lost a tooth!". Chaos ensued (from me...hubby keeps his calm in these kind of moments- on the job training I guess). I had a flood of emotions and thoughts....NO- NO, not now, not his MOUTH!, Oh my gosh, is the bleeding going to stop? How bad is it? Is it just one tooth or his whole upper teeth? Did he do damage that will require a procedure to repair? Is he ok? Is he going to be able to eat? Drink? Suck from a bottle? What about speech? Does he really need this added complication? Is the bleeding stopping yet? We need to take him to the ER....

I wanted to cry, scream, ok- maybe I did scream, and cry....a little....in the kitchen while hubby was assessing Little man more in the bathroom. I was getting bottles and the boys ready- we needed to go to the ER and I didn't want to stay behind....and little man didn't want any of us to stay behind. We told him we needed to go to the doctor, he kept saying "no doctor, no". :(

It was a long evening and the boys learned a little about how quickly an accident can happen. But Little Man, the trooper that he is, has been handling it like a champ! And, he kinda looks cute with a toothless grin....although I'm already missing his sweet full-tooth smile. ;)

Oh, and what did he fall from? He was playing with a skateboard....one he has played with a million times before....