The "Talk"

Well it's official. We finally had THE "talk" with the GI doctor. For those of you who don't know what talk I'm refering to, it's the one about getting a g-tube. Don't know what a g-tube is, it's a tube that goes directly from your child's stomach to their belly so that you can feed your child formula through the tube. It is a scary devestating topic. To realize how sick your child is...even though they seem so healthy.

I think the hardest part at this moment is that we are teetering on a line. If Abinadi was a little worse the doctor would be demanding that he gets a tube...if he was a little better she would think he would be fine without it. I guess the simplest way to put it that he's surviving and not thriving, so the doctor is turning the decision over to us to get our opinion on how we feel our son is doing and where we think he will be in the next two months. It gets even harder that we also need to make this decision on a time frame...within the next 2 weeks so that we can trial an ng-tube (a tube that goes from the nose to the stomach to feed through) to see if he can tolerate the feedings and if they make a differience. Then to get the tube 2 weeks later so that he can have at least 2 weeks of continuous care afterwords before the move back to Colorado. At first I didn't want to think about it, how could I even come to make a decision like this? This is life altering. I wanted the decision to be easy when we came to this point, for the doctor to tell us absolute yes or absolute no...I just really didn't want to think about it.

But as we stood waiting for the Tuesday night family race to start Abinadi had another brakedown. He didn't want to go, he didn't want to run, he just didn't feel good. And in that moment I broke down in tears as well. This wasn't my child, my child LOVES running, LOVES being out and doing family activities. He's not been feeling well, he's not wanting to drink his bottles and he's constantly exhauseted. I was so glad at that moment that I had sunglasses on so that no one could see my utter break down, but in that moment all I could think of was, that while yes Abinadi could continue to survive but I owe it to him to have the chance to thrive! And no matter how much I hate the thought of a tube, if that could make all the difference in his development and growth don't I owe it to him to at least try and see if it makes a difference? I'm terrified of what this will mean and the trials that will come with it, but I have the strong feeling that I owe it to my son to do everything I can to make him the healthiest he can be.

My Children AMAZE ME!

I am so overwhelmingly proud and amazed by my children! To the point that I think someone should do a story on them, or recognize how amazing they are. I guess every mother wants their children to get the recognition they deserves. I just am amazed everyday by their strength. Isabelle who has worked through all her asthma issues to become an AMAZING runner. She's ran multiple 5ks, and she just ran a 1.2 mile race ALL by herself in 13.50. She's always the smallest person there yet she can run like crazy! Then there's Abinadi who LOVES to run with his big sister! He ran/walked the entire 3k the other night. And practices running with Isabelle during her running club. And often outruns some of those children. It amazes me, and it amazes everyone who sees my kids. I constantly hear comments about them and all I want to say is, "you don't know the half of it." I have to bite my tongue to keep from telling them that this tiny little boy ALSO is on a formula only diet, has asthma, AND is constantly sick with his disease from either seasonal allergies or trialing new foods that cause flares. And we are continuously fighting a delecate balance to keep enough calories in him and hydrated well enough to keep him out of the hospital...yet he is there every chance he can running and playing as happy as can be. I guess I'm just a mother who feels that with how hard they have to work to live their lives daily and do the activities that many take for granted, I wish there was a way to recognize their accomplishments with more than my, "YOU ARE SO AWESOME!" comments and hugs. But I guess it'll have to do because few see the daily struggles to show how AMAZING these children really are!

Let's Face It

So let's face it...my life is depressing. I know that. I live it everyday. I have many days where I can't keep myself from crying because of all of it. I vent too much, yet I keep too much still hidden and it's making me crazy. I see what I tell people and I think, "No wonder people don't want to talk to me, or keep in touch." but then the other side of me thinks, "Well, better to know now who cares and who doesn't." This has been an eye opener for me to see the true colors of people, and it is always surprising.

The speakers in church last Sunday were talking about counting your blessings. (At least I think that's what they were talking about. I was having a hard time listening because of my kids) I know it's what I need to do right now, but I am struggling to appreciate the blessings through all the trials. I know they are there, I can start listing them off and have a hard time stopping. But for every blessing that I feel and know, there is another trial knocking me over. So how do I appreciate all the blessings when I'm drownding in trials?

I began this journy promising myself that I would not teach my children to hate this disease. That may be an odd thing to say, but I've met people online and all they could talk about was how much they HATE Eos. And I decided that I would never be that way. I wanted my children to have a positive outlook on life, to see all the blessings they have...yet I find myself everyday struggling not to scream out loud, "I HATE THIS DISEASE!" I hate it, I started hating it the moment I had to lay on the floor for hours one day squirting little sips of this NASTY formula into Abinadi's mouth every couple of minutes so that he wouldn't end up in the hospital again. I HATE it everytime I look into my boys' eyes and see them pining over food. I HATE it when I realize my house is a mess because I can't handle the stress of it all, and all I can think is, "well if my kids were normal, I would have it together." And I can go on and on with multiple times every day where all I feel is HATE towards this stupid disease!

It is SO HARD to appreciate the blessings when all you feel is hate. I am trying hard to keep my kids from feeling that hate. But I know they do. I can see it in their eyes when problems arise. And all I can do is tell them, "I know how you feel. I hate it too. But we gotta keep goin' and we just have to deal." So I guess I'm dealing. It may not seem like it. And it surely tonight doesn't feel like it, but letting it all out, is helping me deal. Admitting to myself my true feelings will hopefully help me move past them, and appreciate the blessings we have.

Advice I Need to Say Out Loud, Even if No One Cares to Listen.

You know when you were a kid and you CONSTANTLY teased or picked on your sibling? You'd make fun of them, and often say mean things. But the moment someone else picked on them, you were the first to say that's not ok?

Well, word of advice to anyone willing to listen. It's the same issue with a chronic disease or illness. I try to see the positive side, and make jokes, just to get through the day. It's ok when I start the jokes. But when someone else comes up and starts making jokes. It's hurtful and feels as if they're dismissing all the trials we have to face. So word to the wise, don't try to make light of it with jokes like, "Well at least it makes grocery shopping easy!" or "Ahh man, I wish I didn't ever have to cook!" Unless you've lived it don't comment. Because you'll probably just end up hurting feelings, and because I would switch places with you in a heartbeat. So don't make me feel worse with the reminder that I can't.

With a Chronic Disease You're Chornically Forgotten

Just as the title sounds, that's how it feels. So just think of someone you know who's child or themselves that is battling something life changing, and stop and ask them how they're doing. Listen to them vent, be a shoulder to cry on, do a little service. Because I can tell you from personally experience they need it! No matter how well they look, or put together, or strong they seem. It's a daily stuggle that never ends, so please don't end the kindness.

Feeling Quit Left Out

You know that pain you felt when you were a little child and got left out of a game or slumber party? Well I can tell you from personal experience, in a similar situation, even as an adult, it still hurts.

When you have food allergies, especially when you have children with food allergies you face so many situations where you are left out because you can’t have the food. It happens daily in a child’s life. It’s hard but you learn to survive because you have to. The hard part comes when you find situations where it’s just not safe to attend. People don’t realize that food gets EVERYWHERE! And how easy it is for a child to touch a toy, or a table or another child and then the food allergic child then stick their hand or that toy in their mouth and they are then sick. We are SO blessed that our children do not have anaphylactic food allergies. I thank Heavenly Father everyday for that blessing, but it still doesn’t diminish the fact that my children will get sick if they come into contact and accidentally ingest or are covered with a known food allergen. And every place we go we have to weigh the risks of whether or not it is safe enough for us to attend. I don’t feel bad about that. It’s our life, it comes with the territory.

But I’ve been having a hard few days. Uriah’s gone with the military again for the next couple weeks and I just need some socialization. You’d think I’d be all set. The ward is having a young family activity…the only problem, it’s an ice cream social. And in the safety world of food allergies, that’s a big no no for little toddlers who can’t keep their hands to themselves. I don’t have any bad feelings towards the people planning it. I’m certain the thought never entered their minds that it automatically excludes us. But the pain is still real, and it still hurts being left out.

It’s hard enough knowing how often we don’t get invited places and my only guess is because the hosts don’t feel comfortable with our situation, but to add on that we CAN’T attend something is just as hard. Why do we as Americans are not capable of having fun without food being the focal point? It’s not fair and it’s painful being the one left out….just saying.

I just wish out of all these people who know us and know our situation, someone would have thought that maybe it’d be nice to plan something everyone can do.

First trial of Bananas

Well almost 3 months of elemental and we're now trying to find "safe" food for Abinadi to eat. (We're going to go at least another couple weeks if not more before we start reintroducing food to Enoch) We first started with Smarties candies. A food many Eos kids find safe because it's all artificial and broken down forms of food, but nevertheless Abinadi started refusing his formula instantly and we had to stop it. Then it was strait sugar to make certain he doesn't have a sugar intolerance, but he didn't like it well enough to eat enough to make a true judgement but he seems fine on small amounts of it. For those of you who don't know, you build a safe diet by taking ONE food, and only one food and trialing it for AT LEAST 2 weeks. More if you question symptoms, or some doctors expect longer for different foods or to scope between trials. The drs here in AK are VERY conservative when it comes to scoping and refuse to scope younger children, and mostly will refuse to do a scope any sooner than a year apart. I'll be curious to see what different treatment we get in CO. You must eat the food everyday for those 2 weeks, and if no symptoms YEAH! You have another safe food to eat. If symptoms arise you pull it and wait for the body to recover before starting a new trial.

So that leads us now to our first official food trial. We chose bananas because they were a food he used to love. First bites not so good. He cried that they were YUCKY, and it was obvious that he didn't remember how to chew or use his tongue, and he didn't like the texture. A common problem that arises from being entirely elemental and not using those muscles. But we continued on and with coaching from me we've been able to get 1-3 bites of banana in him daily. I want to get more than that but he just cries that he doesn't want it. He will need feeding therapy but we need to get at least some safe food for him first.

I'm afraid he's going to fail bananas though. No obvious allergy signs to bananas, but little problems have started creeping up. He's not sleeping well, he has more saliva, is coughing again and it's increasing everyday. All signs that his reflux is getting worse. But that all could just be because his body is readjusting to having food again. Or that his seasonal allergies or asthma is bothering him. All things that suggest that we have to push through and see what happens.

I hate this waiting game! I hate just waiting for the day that he starts vomiting, stops drinking and everything goes downhill. I feel like I'm a terrible person just waiting for that day, but we have to be certain. To make matters worse he's started getting violent today. You may not think that's anything but when you watch your child battle with a disease daily, you start to notice and learn there are emotional signs and symptoms that show up, and who can blame them? You'd be emotional too if you constantly felt ill.

I'm probably going to extend the 2 weeks to be certain the bananas are safe if no other symptoms arise, but I feel like my life has become a detective novel and I am obsessed with watching and looking for any clues or problems that might or are arising. It's tiring! *SIGH*

Here are my 2 elemental boys during snack time after a hard day of play. This shouldn't be ANY child's snack time. :o(

UPDATE: Bananas were a fail. It took almost 2 weeks to have diffinitive obvious symptoms to make me pull the food, and sadly even though he's been off the food for almost a week now his symptoms kept getting worse. Now I know why I was never able to pinpoint which foods caused the problems.

Why I'm so Passionate About Eos

So if you've read my other posts, you know that we don't have anything official. But here is why I'm passionate about Eos. Because when it comes down to it, these amazing mothers have been the BEST and sometimes the only support we've had through all of this crazyness, and with trying to get our boys healthy. And looking at things in the long term perspective the only way we will eventually find answers and better treatment options is if Eosiniphilic diseases are reasearched more and find more treatment options giving us more information.

The Perfect Example

Say you see a man coming out of the movie theater carrying an empty tub of popcorn. He's talking about the movie he just saw and you watch him throw away a movie ticket stub. What's the first thing that enter's your mind is that obviously he just got finished watching the movie he's talking about.

Yet upon closer inspection the person selling tickets doesn't remember him, neither does the ticket taker and the concessionair. He also paid in cash and didn't want a receipt (you know to save the planet and all that.) No one in the movie theater remembers him...it was just too dark. So we seem to have NO proof that he actually watched the movie. But are we pretty sure he watched the movie? Yes!

If it waddles like a duck, and quacks like a duck...it's a duck.

Now could this guy have us all fooled and he never trully watched the movie? Sure. It's possible but not likely.

So when it comes down to it there is a chance our boys don't have an Eosinophilic Disease. But if not that just leaves the probability that it's a rarer disease or a non categorized subset of the disease. Either way that still leaves us in the same spot with our 2 boys having severe non-IgE food allergies to too many foods that they cannot sustain a healthy diet. And the fact that they will not grow out of it, we can only hope to build a large enough diet of safe foods to eventually be off the formula.

The Confirmed Diagnosis or Lack There Of.

We have known that our kids have food allergies before we ever left the hospital with all of them. Obviouse signs that they couldn't tolerate formula. Further testing eventually revealed that all of them had non-IgE food allergies found with patch testing. In simple terms: food allergies that effect their digestive system, not anaphylactic. With Isabelle it was simple. Found out what she was allergic to, removed those foods from her diet and viola, she was a MILLION times better within 2 months. I couldn't believe it, it was like night and day.

With Abinadi, it wasn't so simple. We removed known allergies, tried formula after formula, and he still wasn't a 100% better. So we found he had asthma and started flovent as best as you can in a baby and suddenly a lot of his vomiting stopped as well. After that point we had seen a GI, done a scope and tried another formula and he was doing better. But slowly with more and more foods intoduced and as more time passed by he got sicker and sicker again. Back to the GI do another scope and NOTHING. Signs of damage, but no obvious cause of the damage. (We later found out they only took one biopsy for each location, which only gives a 50% chance of diagnosing an eosiniphilic disease.) That is when we found out about Eosiniphilic Esophagitis and noticed that he fit the symptoms and how he responded to treatment exactly as the disease does. But we didn't have a confirmed diagnosis. So we decided to take things week by week.

By this time Abinadi was vomiting every 3 days with no obvious reason why. He was retested for food allergies and it was all inconclusive, so we cut out every questionable food and it helped...a little, before he got worse again. Every week we were pulling more foods out of his diet yet he was still so sick that we eneded up in the hospital with dehydration and failure to thrive. He was loosing weight constantly, wouldn't eat or drink, gagged on everything, vomited every 3 days to the point where he was dry heaving for hours. Couldn't sleep and a million other horrendous symptoms no child should endure.

We doing things step by step, changing reflux meds, put him on elecare and neocate, cutting out foods, tried multiple other meds, and steroids which helped but never solved the problem. Finally we got to the point where we had to do something drastic and fast. That was the decision to pull ALL food from his diet and put him on an elemental formula ONLY diet and an adult dose of nexium. It was like night and day. It took a couple months to get enough calories in him, and to find a balance between the constipation and formula causes and meds...but eventually I got to see my boy again. I can't tell you how heart reanching it was that day that I noticed that my boy was happy again. That his symptoms had resolved and I could see that twinkle in his eyes again. It still brings tears to my eyes to remember that moment. To realize that I couldn't remember how long it had been since I had seen the personallity of my little boy. I had him back. And I will EVERYTHING in my power to keep him this way. No matter what that means.

That is when we had the conversation with the GI dr about his "diagnosis, or lack there of" She finally admitted to us that in her heart of hearts, that this was what he had. An Eosinophilic Disease or a rarere sub set that hasn't been categorized in literature yet. She had no way to prove it and we can't prove it. But it fits, it makes sense, so we'll just move forward with what we know and treat him as we can.

But I journey didn't just continue here, it got worse. We started to notice all the same symptoms and problems in Enoch that we saw with Abinadi. Actually at an even worse and faster rate. So we tried many of the same things and finally got to the point where it only made sense to go to a formula only diet with him as well. He hasn't been scoped at all yet. The drs didn't feel comfortable scoping on a child so young especially when even after a scope they didn't think that no matter what the results if it would change how they treated him. So we're taking it day by day and hoping someday we'll have "official" answers or diagnosis, but if not, that's ok. We'll still do what ever is needed to keep our boys healthy.