Wednesday, August 28, 2013

Samuel's self-portait from last week

I know it's been a long time w/ no entry. I'm not feeling particularly more inspired to write than any other time, and yet something has driven me to this keyboard.

Tonight I feel achy and sobered by some happenings of the past 24 hours. I also feel sad and a little pitiful. Yes, as in self-pity. There have been lots of such happenings lately as tonight makes Samuel's fourth reaction of the summer. Surely that cannot be true...let's see... the cross contaminated cereal, the chicken nuggets I made with the wrong flour, the time when a caregiver gave him [ranch flavored] Veggie Chips. And tonight when I purposely gave him a cracker intentionally. Okay, it was two crackers, not A cracker. Two very small, quarterish-sized crackers.

When we went to National Jewish two years ago out of desperation for help with S's eczema, we learned S still had a sesame allergy despite him consuming it often via our beloved crackers and chips. We cut it out completely and the eczema improved. Somehow I had mostly thought it ironic and credited a few other things for his relief.

Since cutting out sesame, I have been coveting the possibility of finding a safe cracker for S. I noticed a new one, two WFoods trips ago and have "visited" the box several times considering buying them. (As I often visit a great pair of boots or maybe a beautiful antique mirror before purchasing.) Upon last night's WF's retail therapy, I read the ingredient list another five times (sesame was toward the end; he used to eat it daily near the beginning of the list with nothing worse than eczema), and put it in my bag.

Resisting the urge to pack it in his lunchbox late last night, I gave him two after school. I'll spare you the the details of how calmly I passed them off to him, brother and Dad; prayed in the kitchen afterward, etc.

He loved them. Yet a few minutes later he was telling me his tongue was hurting. Not itching as the other times this summer. No spitting. No hives. But "hurting a lot" and "Mama, is there wheat in these crackers?"

Damn. Once again I have to decide how to respond. Once again I have to struggle with the reality of him not trusting me to give him safe food. I didn't epi. Gave Benadryl instead and watched closely, still trying to be calm and reassuring. I explained what I did and hope he understands. But I feel, in his trying to act like he might be okay, he doesn't.

He recently confessed to me that he never wants to try sunflower seed butter because he doesn't think he will like it, but also, mainly b/c he is scared it will be contaminated with allergens (which is the reality of the other two jars I have bought in hopes they would be safe---which I never fed him). I told him then that I would not give him anything that I thought he might react to. So I guess that makes me a liar after tonight. But I really didn't think he would react. I thought maybe we'd see an eczema flare tomorrow, but certainly not the "my tongue hurts" thing.

It's been about three hours since and he is fine. Or he was when I last checked on him one minute ago to check for hives and breathing. I'll probably check another 9 times before the night is over.

So there is that.

There were some other poignant things that happened last night and today that made me sad. One example---him asking me to order him the "safe Lunchable". He is super curious/attracted to those things! ...About six months ago I thought I found a safe version online and mentioned it...only to discover they all have soy protein if nothing else. So when he said last night, "Mama, you can take out the cheese and the crackers and the oreos. You can put my safe oreos in there..." I had that achy feeling again. This time making me feel both thankful that he intellectually understands and can now creatively think about/substitute like only a brilliant FA Mama can, and both sad that he is thinking about/substituting in his head like only a brilliant FA Mama can.

Yes, I know I should be glad he doesn't have XYZ, or that he can even think or eat at all. I actually contemplate such things often and AM thankful that it's "only food". And yet, the ache and grief is real and certainly valid. Especially in light of so many FA parents trying to make sense of Natalie Giorgi's death last month. So here is to those of you who need to hear it, including me...this is hard stuff that needs to be grieved appropriately, especially as we really must be strong, confident and calm parents with our FA kiddos.

...and because I know I always like pictures, I took this today at Target post haircuts while the boys were coveting Chima, dreaming of birthday gifts.

Wednesday, November 23, 2011

Samuel's Strawberry Surprise/Happy Thanksgiving

I've never posted something I've made (but I wish I did because I so appreciate when others post recipes). Making this is a great example of cooking/baking with food allergies, Ashley style, at its best. You have an idea...look up the "normal" recipe and then figure out how to do it so that your little one can eat it. Which also means asking other Mama's, online, who know about this stuff.

Most of the time you spend too much time, money, energy, not to mention heart, and he doesn't even eat it. Yes, that is true. But every once in awhile it works and he will love it. Also, a part of the drama, is that you occasionally find yourself throwing some ingredient in because you know it needs something. This kept happening to me tonight and I was able to laugh out loud many times, all by happy self, in my quiet kitchen. So, we'll see if it is any good, particularly if HE likes it. I'll try to post the recipe if so.

By the way, this is that pretzel, strawberry/strawberry jello, creamy dessert you probably had at a potluck long ago. Come to think of it, that is the one and only time I had it--at a potluck in Dusseldorf, Germany, another lifetime ago. Obviously made by an American.

And, finally, this is WHAT I made for Samuel for Thanksgiving. I have no idea what else he will eat. Probably a hot dog and chips.

Sunday, November 20, 2011

Breathing Treatment

So last night Sam had his first breathing treatment at Lebonheur. I hate that I've said "first", but in my mama gut, that is what I feel. Asthma is a whole new world to me. I am not saying he has it, he very well might not...time will tell. But the odds are way in his favor. In case you don't know--allergies, eczema, and asthma go hand and hand. It would be rare to find someone who only has one of these.

Can't believe we were just at the top ranked respiratory hospital in the world (National Jewish in Denver), and left without help in this area. Actually, Samuel had his first wheezing there, but not while in the hospital.

Anywho, he is fine now. He and Daddy are on their way to Walgreens now to get his new inhaler and Aerochamber. AND an antibiotic because while we were there they just happened to notice a double ear infection! Of course he didn't go to sleep until after 10:30, was up in middle of the night, and was wide awake, ready for the day at 5:15! Lord, help us!

Friday, November 18, 2011

I'm putting this picture here because I need a URL place to post!

Friday, November 11, 2011

normal life, good life

1. mimi carol has come for a visit!

2. followed by mimi vv's visit

3. samuel found a snake in the back yard! he brought it to me as if a worm!

4. eli left me a note...i found this cleaning up after lunch one day!

5. aunt b came, aka, aunt bestsy. it was a fun time, but we didn't take any pictures, sadly.
6. two things i have no pictures of:
yesterday when i picked eli up from mother's day out, his teacher told me that he had sleep walked during their nap time!
today on our way to our local bookstore, samuel told me quiet earnestly, studdering and all, that he asked Jesus to let there be no story time at the bookstore (he prefers to play). ah! his first acknowledged prayer of supplication unanswered! i knew there would be story time, so i tried to brace him, but...

7. just a thought about samuel's skin, as so many still ask about colorado. below is a random picture taken in august. his worst spots are covered up, and yet there is much to see. i don't have a great one to compare, but his skin has been practically clear since returning. a huge praise. as a result he is sleeping better and far less anxious, etc. thank you God.

Sunday, October 16, 2011

quick epilogue

so many of you have asked how it all went.

here are the things we learned at National Jewish (some of which i have already mentioned, but this will the one-stop-for-all info.)

*samuel has an allergy to peas. i don't know exactly which peas. i know green pea but the docs want us to proceed only with great caution with all legumes (which is an outrageous prescription for us who love lentils, black beans and many others). we know there is an allergy to green peas, which he hates, yet had been slipping in on a daily basis with the butter (earth balance soy free) that we use(d), and often with our cheese (daiya). both are vegan/soy-free---so they are reaching for a protein...and use green pea. so, no more.

*he also has a sesame allergy,
which also was slipping in with his occasional cracker (crunchmaster gluten and soy free sea salt crackers which we love(d). also, there are traces in his pretzels (ener-g wylde wheat and soy free pretzels) which he ADORES and we previously eating daily.

----even though the docs initially discouraged us from being able to find a food trigger to his eczema flares, i think we all now see that the green pea and sesame were bothering his skin. time will tell.

*we feel very competent to treat all stages of eczema.
if any reader ever needs help of any kind re: eczema---call me. for almost four years i think i can honestly say that i knew most all there was to know. yet denver was helpful in watching the nurses do their thing with the steroids, wraps, etc.

*our suspicion of dustmites and humidity flaring his skin was affirmed just by docs' reasoning and samuel's testing.

*finally, we learned that he is just a very allergic little ma
n---to foods and environmental allergies. his tests for peanut and soybean were (literally) off the charts, which is hard since his numbers have gotten so much worse since he was last tested at 7 months old. for example, his soy number was 2.2 and now >100. one hopes to see their child's numbers going down, not up.

now the rest is just my rambling for those still interested-------------------

only 20% of peanut allergic children are said to outgrow the allergy. i have always felt relatively okay (i know that sounds weird) with that. our world has grown aware of peanut allergy, and while it is a very serious and fatal allergy, it is more common which means easier to avoid and easier to deal with practically and socially.

as far as the others---soybean, egg, milk, wheat, and tree nuts (okay and green peas and sesame)...i just know that you put one foot in front of the other and live each day. my job is to feed him and love him, advocate for him when needed. i used to pray daily he would outgrow his allergies. i don't know if i have stopped praying so much bc my prayer life is usually pathetic, or, if i have grown weary or pessimistic in these four short years. neither reason feels good to me.

more than anything i want samuel to obviously...well, not die. i know that is a serious statement, but all parents of food allergic kids probably would name that first i suspect. after that, i want him to grow up knowing he is loved by me, david, and God. i want him to know he is special---not because he has allergies or because he is so cute :), but because he simply is...part of being created in a wonderful and fearful way. and, in his case he was created in such a way that his body misunderstands certain food proteins. i want him to be able to live as normally as possible. i want to teach him how to do sports, travel abroad, shop and cook for himself, etc...basically take care of himself while having severe allergies and eczema. these are things that he can learn and will have to learn, things i know i can teach him.

my heart was really pricked greatly by those teenagers there (see our "day one" post below). i know that the odds are in samuel's favor to struggle with anxiety, depression, low self-esteem, etc. due to his condition. i feel called to help him as much as possible (yet no more) to grow strong mentally. as a mama i long for him to be kind, sensitive to others and passionate towards good things. also, i long for him to have a very solid sense of himself, to know his value in Christ and to be confident and secure. seeing those older kids there was in one strange sense a great thing. because it is a reality, i feel thankful that i was able to witness it as a mama of a four year old. i am guessing such mental anguish caught their parents by surprise as it grew perhaps slowly through the years. Dear Lord, i pray to patiently, yet intentionally, shepherd both he and eli's little boy heart's that will grow and mature and one day be that of a man's. i pray God will use samuel's stuggles for good in both his life and the life of others.

so i have certainly gotten off track. the end of the denver updates. unless i finally get around to sharing what amazing hosts we had there with the bartley's.

Thursday, October 6, 2011

we tried!

sam had a bite of wheat noodles at 10:15, then another bite at 10:35, a few bites at 10:55, then a good bit at 11:25. nurse checking his skin and lungs/breathing before each new bite. he seemed fine. he loved them. about an hour later i saw a small hive on his face. a bit longer there were three...and within an hour he was covered from the trunk up.
doc gave him 1.5 tsp of benadryl and they were gone after a couple of hours.

the doctors were surprised that the reaction took so long to present itself. he had a similar reaction the only other time he had wheat, and come to think of it, it was similar to when he had green pea as a baby.

we didn't loose anything from trying. except, of course, that everything this afternoon had to be canceled. and, i don't know if we will be able to challenge another food tomorrow or not (we had planned on trying shrimp and oat). it does kind of mess up things because you have to be off antihistimines to test for allergies via skin test, which we were thinking of doing for a couple of things tomorrow.

but, still it's okay. we actually had decided to cut out a day early and fly home on saturday. we figured that one more day wasn't worth spending three more days here. we have loved denver but also would like to get home to real life. we are so thankful that we have been able to be at national jewish, but also...a little tired of being there.

i'm still really torn. and, it is hard to explain the reasons.

basically, samuel had so many positives on his tests. i had decided to just overlook them and carry on assuming they were false positives, but i keep hearing that terrible voice in my head, "what if X is the one food that is keeping him up at night scratching." which is probably not true. and, i might can do the detective work at home. we know that he isn't eating anything he is highly allergic to, but certainly perhaps an eczema trigger.

if that last statement seems to contradict one of my earlier posts, it is because that is what i have concluded this week via my own intuition, talking with some nurses, and a couple of other doctors. just because he doesn't break out in hives, vomit and stop breathing doesn't mean he doesn't have a food that is flaring his skin, causing problems. just hard to pinpoint it at home where dust mites and humidity abound.

lastly, we were told that we need to take sesame and green pea out of his diet, that they look like solid positives. sounds easy since he doesn't even like green peas and since we aren't passionate about sesame. but, sadly his favorite chips and pretzels (which he eats everyday) have sesame in them. and, his butter and vegan cheese
(our only cheese option realistically) both have pea protein. this will take a few days to sink in. i am so glad (it seems that) we gained soy lecithin and soy oil, but wow---we are loosing four of our main staples. mainly butter and dayia cheese. sigh. i can honestly say, however, i am glad to know. perhaps THEY were what was flaring his skin??!! i say that partially kidding, but who knows.

praying i will have wisdom to know if i should just wrap things up tomorrow and get home on samuel's birthday, or stay over the weekend to finish on monday (which was the original plan since program is really 10 week-days). not a huge deal either way.

a few more pics. samuel has made some friends, which has been very dear. below are sawyer and his sister hazel. sawyer came with severe eczema and had been told to avoid 30 plus foods; his family was spending close to $3K each month on his prescription formula...he was discharged today with beautiful skin and a has added the majority of those foods back in. it was great to get to talk with his mom and dad throughout our stay.

Wednesday, October 5, 2011

sam passed soy lecithin and soy oil!!!!!!!

this is huge. it opens up many store bought foods for us.

we are so glad. hate that i am still a little bit skeptical.

for four years we have avoided anything that says soy like the plague as samuel is anaphylaxic to soy. and even this week his skin test was highly positive; RAST (blood test) score was literally off the charts high (along with peanut). so, it will take some time to get used to seeing the word soy and then buying it and then preparing it/feeding it to him.

clarification if you missed it from another post: the protein in soy lecithin and oil is removed in the process of creating the substances, so the body doesn't recognize it as soy, so therefore safe. sort of like how most peanut allergic folks can safely eat at chic-fil-a, which uses peanut oil.

my question is: if soy lecithin and soy oil are safe for soy allergics 99% of the time, why do we not know more about this and thus consume it!!??

he tested positive to almost all of the 35 things that were tested on the blood test, yet we will assume most are false positives since we eat them okay now. if the numbers are high and they correlate with strong positive on skin test we might think about testing those to see if his eczema flares.

tomorrow we will try wheat. the only big one we will do as his results to egg, milk, peanut and soy are extremely high and not even able to consider considering.
i really doubt we will pass wheat, but will be glad we tried.

thanks for reading and following all this confusing verbage.

Tuesday, October 4, 2011

quick update

david and eli left today. i didn't realize how much we loved having them here until we came "home" today and they were gone. they were able to spend a few days at the hospital with us. and---we went to the aquarium, hiking, the zoo, the natural science museum, visited red rock amphitheater...etc. david and samuel got to do what they like best---run around 100 mph together.

couple updates:
-tomorrow samuel gets to skip the wet wraps. in fact right now he is sleeping without them for the first night in a long, long time. we'll see how he does. (major detail is that colorado has NO dust mites as it is too dry for them to live! which, are probably one of s's big triggers, especially at night.)

--his skin looks and feels amazing. so soft. never felt like this. we contribute this to the number of baths/wraps and elecon.

--today they did a food challenge to beef, which was not scary in the least. we did it to see if he would have an eczema flare. he didn't. was fine.

--tomorrow is actually our first big day---in terms of really seeing if he can add things to his diet. docs say that 99% of people with soy allergy can eat things with soy lecithin and/or soy oil. so tonight i bought vegan chocolate chips with s.l. and we will just take some oil and mix it into applesauce or something. despite the stats i am skeptical. but, being able to eat that would really open up tons of things as most all processed stuff have one of those two things. not that we want processed stuff...but certainly on occasion.

--the other food challenge we will most likely do is wheat. his skin test was positive, but just barely. if the blood test comes back low too we will try it. we will probably try it even if it doesn't. he's only had wheat once and it was over two years ago. i cannot even begin to say how adding wheat would change our lives. we will see. i expect to gain no foods, but certainly would love that surprise.

--like i said, we have not yet gotten the blood tests back; hopefully tomorrow so we can see if we want to challenge any more foods. the only thing that might even be a possibility would be baked egg---which i feel is very unlikely.
and if there are some foods that have high positives which correlate with positives on skin test we might eat those to watch for an eczema flare (which we would be able to see since his skin is so clear.)

eli often insists on walking on his own. which is...fine...except when on a long hike...

samuel had to have a go at the back pack action

Saturday, October 1, 2011

Food Allergies 101

I alluded to this in the last post---beliefs about food allergies vary greatly, even in the medical world. The following information is based on the views of the doctors at National Jewish, and, importantly the top allergists in the world, and, also by many of those who have had lots of personal experience with food allergies.

I will use Samuel's body to explain. We came here solely in hopes of discovering if there was a food we were missing. I was suspicious of beef, tomato, white potato and sesame. Not all of them, but wondered if one was causing his flares. In his nearly four years, allergists have tested him to the first two on the list, and, each time the tests came back positive. However, we thought they were false positives and left them in his diets. But recently, I started to wonder.

According to Dr. Fleischer at NJ you are not allergic to a food unless it causes hives or symptoms of anaphylaxis. Also interestingly, you will not gain any new allergies. Except, there are times that one can become allergic later on to shellfish. So there would be no reason to test for new allergies.

Those are big statements for mamas like me to wrap our heads around. One, we are so desperate to find any answer that can help severe eczema flares. And, this view is not commonly held. In fact, our dermatologist (whose son has severe FA) and our beloved allergist would not draw that line. They would both say that flared eczema could be a symptom.

But Fleischer (who is one of the two top dogs here) says no. I feel that it is possible to have a "milder" allergy to a certain food...and where one might not stop breathing upon ingestion, one could certainly get flares. Not according to Fleischer. There is not such thing as a mild food allergy.

So, as in the case with Samuel---we are not missing any food. It is a waste of time and money (and certainly heart) looking for THE food that is reaking havoc. Since Samuel is no longer contact reactive to milk, we have not seen hives in a while. And (except one small incident this summer) we haven't had anaphylaxis symptoms either in a long time.

I am so thankful to Dr. Fleischer because he very respectfully wants me/us to leave Denver believing deeply in our hearts that this is the case. He doesn't want us getting back to Memphis and still wondering about a food. Love him for this. Because truthfully, there have been many times when I was given false info from medical doctors in the past re: Samuel. Each time I did not believe them, and each time, I was right.

I could say much more about this, but trying to say it briefly.

Friday Samuel had a scratch test to environmental allergies in TN (horrible!! so allergic!!) and a blood draw (very difficult, even Daddy cried as they had trouble getting blood) to test for IgE in blood.

They should have the results back on Monday. At that point we will do a few more skin tests (called puddle tests) and start eating the suspicious foods looking for reactions. Which is the only way to really know. I don't know how long all that will take. We are supposed to be here for 10 more days. I hope we can finish our work by then.

NOW for the FUN NEWS! Daddy and Eli flew in on Friday! We have loved being with them. Today (Saturday) S had to go in for a bath and wrap, so we used the last bit of our morning to go to the aquarium which was fun. Tomorrow we are headed toward Golden for hiking and "seeing mountains" as Samuel keeps mentioning.

this was S's favorite part of the aquarium---seeing swimmers in the tank

Thursday, September 29, 2011

Day 3 at NJ, AKA too much info

yesterday was pretty uneventful. lots of baths and wraps.

lots today too. and, if you are wondering about our wraps, here is the deal, briefly.
the whole thing about people with atopic dermatitis (eczema) is that their skin has a problem holding moisture. here is more info if you are interested.
so, one of the ways to get more moisture into the skin is by applying wet wraps, which are used after one has bathed for 20 minutes, just to the point where the skin is thoroughly wet/soaked/slightly saturated but not too much. within three minutes steroids or thick ointments are slathered on, followed by wet tube socks on legs and arms, followed by a pair of wet pajamas, and lastly, a pair of dry clothes.
we have been doing this most of the summer with no signs of improvement. however we kept doing them at night because we found samuel would sleep better with them on. seems the wet suppresses the itch that kicks in at night when cortisol levels are low, etc. and of course it's impossible to scratch with layers of tube socks on your hands.
it seems we are like 1 in a million who do not see signs of improvement...and the docs here keep saying that it will we keep going. he has certainly been less itchy, hardly itchy at all, so that is progress.

the big thing today is that they did a scratch test for food allergens. we've had them done annually in the past. they are helpful in trying to figure out allergens, but not always accurate. lots of false positives. there are (mainly) three other ways to determine what you are allergic to. 1--RAST test, which is a blood test. these render lots of false positives and therefore can be very misleading. lots of people have these done, and concur they are allergic to all the positives, wasting lots of time, energy, money, and let's face it, joy, avoiding those foods, when really they were simply false positives. 2--a puddle test...which is a type of skin test were fresh food is mixed with saline and used. 3--and finally, the only way to really know what one is allergic to is by eating the food. we have done most of the above before (even if by accidental ingestion).

so today we did step one of the equation. after looking at samuel's history, the doc wanted to test 28 foods. i didn't know what foods were being tested until it was happening. they tested many i did not understand and left out several that i really want them to test, so, it is my hope those will be tested in the next few days.

by the way, my goal in making this trip is to see if there are any (eczema) triggers that we are missing. particularly, i felt there might be a food i was missing that though he might not be highly allergic to, perhaps enough to cause his skin to keep flaring severely. so, these tests are big.

i don't know the exact results, but i know that peanut, milk, and egg were high positives (no surprise here). also soy (also no surprise since we have had anaphylaxis with), yet the wheal on his skin was much smaller than PN, M and E. beef---which i really knew in my gut (okay, and he has tested positive to it several times). other positives---green pea (which we have a history of problems with so if true no surprise)...and mostly a bunch of tree nuts.

there is one main allergen i left out...that was a very small positive. but, small enough that if the blood and puddle tests are also low, we might challenge it towards the end of our time here. i will not mention what it is, i will only say that this would be amazing news. and, i will keep you posted.

but again, adding foods isn't our goal. but would be nice if we discovered he'd outgrown something, of course.

we left today just before 5, the earliest yet. were able to get "home", play with friends and just be normal. it was fabulous. btw---i haven't yet even mentioned how very fortunate we have been to stay with sara and jess bartley, who live in the most adorable bungalow on a very charming street, just 8 very short blocks away. MUCH more on this later.

in closing, i will say that, Lord willing, david and eli will fly out in the morning to be with us! we are excited. david will be able to go with me to some important meetings with the team of doctors that have been working with us, and, be here for his skin testing of environmental allergies. they will be here until tuesday! we hope to have a mini-vacation this weekend, enjoying all this mountainous beauty.

and, here are two other pics from the day.

Tuesday, September 27, 2011

we are here, day 1

first of all, my shift key doesn't work---so nothing capatalized here.

we had a good day. pretty long. checked in at 8am and they couldn't get to samuel's bath until 7:30pm, which meant bedtime was about 10 pm according to his body that is making the time switch.

we saw lots of doctors.

and honestly, i keep trying to decide what to write and i just can't.

i will load a few pics of sam.

the main thing on my mind as i am going to bed, strangely enough, is not even about my child who is asleep in the bed next to me (we spend the first night in the hospital). i cannot stop thinking about the teenagers i have seen here. i don't know how to put it in seems too sensitive/sacred to mention. i just feel intensely for them as i know their allergies, eczema, and maybe asthma has really affected them mentally over the years...which is quite the norm for such kids as they grow older. adorable kids that...are having quite a hard time.

please, if you know a teen with health issues that have seriously affected their daily lives, please be kind and sensitive. i've overhead a few stories today and looked into some sad eyes and want to help.

but for now, here is samuel.

on the plane. loving it.

in his bath. starting tomorrow he will have three a day, tapering off over time.

mummified (this is to help his skin absorb as much moisture as possible post bath. under blankets is sweatsuit. under that are wet pjs. under that are wet tube socks on arms and legs. we call them jedi wraps, coined by daddy.

headed for sleep. in bed watching monsters inc.

Saturday, September 24, 2011

Denver Here We Come!

We leave in about 36 hours. At this point I have no doubt that we are supposed to go. I am so excited and even humbled that we will be under the care of many brilliant people, in the area of our very specific needs. So glad that I will not be in charge for two weeks.

Part of the reason I decided to blog again is because I want to share our journey. I love stories, particularly true ones, about people. I think stories have so much power. They can teach us very important things about ourselves and the world in ways that mere fact and fiction can't. While doing so they are known to encourage, inspire, convict, and produce great interest/empathy for those unlike ourselves. They can bring you to your knees in laughter or pain.

In sharing our story I hope to do a few things: update family and friends/people who I know are interested. Secondly, I have a passion to educate, encourage and advocate for those who are trying to figure out their child's (or friend or family member's) food allergies. At the same time, I know that most people do not understand these things. Sometimes that shows itself in curious, kind ways and sometimes such inexperience can be downright mean. Usually it's somewhere in the middle. I have grown somewhat okay with all the above, as I try to remind myself that the meanies simply cannot comprehend. I might be the same way were it not for having S. And, I want to be okay with that. Just don't be mean to my kid.

With that said, regardless of who you are, you are welcome to come with us on our journey. It is quite rocky and not so pretty at times. We often perform well, but most of the time we are a mess. For the most part, we no longer pretend to be something other than what we really are. We are Christians who both desperately treasure the Gospel of Jesus, and yet struggle to love, believe, and hope in almost every area of our lives.

Another purpose in me blogging is to ask readers to pray for us. I have two specific prayers right now:

1. Samuel is officially off antihistimines until at least Tuesday per doctor's orders (he has to be for his initial allergy testing). We have (David and myself) no expectations of sleeping between now and then bc that is the best way to cope with being up hour upon hour with a child who is miserably itchy through the night. We pray that Samuel will get as much rest as possible, and, us too.
2. We had someone pray for us the other night, "Lord, give them answers, but if not, give them faith." I think that is going to be my prayer through this whole experience in Denver, which such surrender is rare for me. I am not there yet though, yet praying to pray that!

So I wrote the above post while David and Samuel were at the movies watching Lion King. Since then we have had baths, gotten both boys to bed...but it seems S is sick. Symptoms point to stomach virus. So, now we pray that it is short-lived and we are able to board that plane on Monday.

Monday, September 12, 2011

We Have a Date

We are leaving Monday, the 26th of this month and come back 15 days later. My biggest thought right now is, how in the world can I be away from Eli that long? How can he and Samuel be apart that long? They even miss one another sometimes when Eli naps. They are together all the time--they eat all meals together, take baths together, ride next to one another in the car, they even sleep together at night.

But we are thankful that we are able to go. I feel mostly hopeful that the doctors and nurses will be able to help Samuel.

Wednesday, August 31, 2011

Red Flag Removed

Something amazing happened today. I feel I need to get out my notes from seminary re: modern day miracles, to understand them theologically. But, it really doesn't even matter, because I believe God intervened dramatically today.
Long story short: insurance carrier is now telling us that they see no problem with our policy and the hospital's billing...after they were adamant before that we would incur this fee, costing mot likely around $8K.

Praise to God, who heard the cry of my heart, and the prayers of close friends and family. And, thanksgiving to Him who loves little Samuel even more than we do. I often struggle with doubt in his goodness and his activity in our lives, and feel grateful to have seen Him work this one out. I hope I don't forget this.

Tuesday, August 30, 2011

Red Flag

I am not articulate. I am tired and sad. And, I still must make myself go put away dirty dishes and pick up toys. But, for all three of you that are reading my blog, I felt I had to share the news I received today.

A major problem with insurance! I was scared to hope that we could actually go and be helped by those at NJ, but did not think it would be an insurance issue. I thought we had already covered those bases and had green lights. But, it seems that there is some code that Samuel's insurance will not cover. Regarding the billing of the actual facility---rooms, equipment, etc. He will be billed as outpatient, yet because he would be in the hospital all day/every day there is a charge re: the physical property, which, his insurance won't pay. Which would mean $6-9K out of pocket. Yikes.

I really do not know what to think. There is a part of me that still hopes. I think that's because I know he must go. I cannot keep putting these intense steroids on him, wet wraps at night and sometimes during the day, doing 20 other intense things...AND it not even seeming to help. When we go out of the house he usually wears pants so much of his flares are covered. But if I let him wear shorts, as I did today, people stop and gawk. We have had four people ask HIM what is wrong in the past couple of days. Most ask if he has chicken pox. I am sad, because he has noticed, for the first time, that others see a problem with his physical appearance. Lord, please do not let such comments and stares wound his heart in damaging ways. I know, I know, there are much worse physical conditions. But I have been aware that he notices that his body is not attractive, even strange, perhaps even ugly. He feels shamed. Dagger in my heart. This is why I haven't posted any pictures. I just feel I want to protect him.

I want to write a poem, or something about the experience we had driving home from a birthday party the other day. I really want to skip the details of the party...except the last one. As we were leaving he had a major itch attack and I had to carry him out. He screamed and cried and before I knew it, he had blood all over his legs and feet. When he finally settled down five minutes later, I turned around to look at him---I was overwhelmed by his adorable, yet exhausted face resting on his carseat. I mostly noticed his bright, blue eyes which seemed to be telling me something. Suffice it to say, it was a bit more than I could handle. The Mama Bear in me not only collapses with grief and compassion, but at the same time harnesses a vigilance that promises to help him.

Not sure I can help.

I want to write more later about what God is teaching me right now re: my powerlessness. Too late now.

Thursday, August 25, 2011

Something Wonderful in the works. My pessimism tells me I ought not share nothing is official yet. Quiet, sober, doubtful---so as to be less dissapointed later on...

But, as a fervent lover of hope, despite being a nominal believer of it's existence, here it is:

In the near future Samuel and I might board a plane. I will likely look haggard; Samuel will likely look like he has leprosy (due to the absence of all steroids and antihistimines the four days prior). And, as if magically, we will be transported to a place where a team of amazing people will care about him and know him by name. They will also be brilliant doctors who have the potential to truly heal his little, exhausted body.

I could go on in this fashion for awhile, but sparing you the drama, we are waiting to find out when (and if) we will be scheduled to go to National Jewish Health in Denver.

David and I have put up our white flags...we are not able to help him. Lord knows we have tried. As has our pediatrician, allergist, and dermatologist. Nothing short of a happy dose of Prednisone will do the trick. Sadly, that is a med that can't be rubbed into his inflamed skin, nor taken more than once or twice a year.

If you saw him today, you might not notice. He had on long linen pants, socks under his Keens, shirt tucked in. But even me, while bathing him tonight, almost had to look away when I caught a glimpse of his backside. He was screaming/crying because he was both itchy and hurting. He was frustrated because I kept trying to distract his mind and hands from scratching while I started to put on his wet wraps.

So, for now we are done with restricting foods like white potato, tomato, and strawberries for weeks at a time hoping to find the culprit. I am now quietening all those voices in my head that say "aha, perhaps it is this damn front-load washing machine that harbors so much mold", or "oh, maybe those new vitamins were somehow cross-contaminated with one of his allergens in the factory and THAT is it!" Done. I can't do it. I would if it were possible, but I simply cannot heal him. I know that now.

The average stay is two weeks. He will specifically be treated for his eczema while searching for the trigger. Therefore, there will be lots and lots of work done in regard to his food allergies. I feel strongly that we are missing something. A grown allergy to something like sesame, corn, or oat? Perhaps I have underestimated his dust mite allergy, and rather than sleeping on a bed at night we ought buy a cute leather couch for his room. Anyway, like I said, I am trying to put the detective Mama away and just try to love him well with all that can be known today. Leaving the detective/doctor/Debbie-downer up to the Big Dogs in Denver.

Friday, May 20, 2011

For Mimi, Happy Birthday!

Looks like it has been 17 months since my last post. Our blog has certainly taken a backseat. And I am doing so now to have an easy way to post this video of my mom. It isn't even a great, or even good video...but it is the best we could do in the moment. And Mom, I think you will appreciate--in some capacity---how raw it is. Love you.

Saturday, October 3, 2009

Pics for Daddy

Well...obviously much has changed since our last post...
Eli is obviously here (Elijah August Simmons). For those who do not know, he came on 9-9-2009, weighing 7.6, 20 inches long. We are all doing pretty well and loving the new addition. Samuel had a hard first couple of days home, but now seems to love Eli for the most part. The pictures below are a little random, and mainly from the past couple of days, but wanted to post them for David, who is out of town and would love a visual update.

Thursday, September 3, 2009

Tuesday, July 14, 2009

Taken a couple of weeks ago, I think about 28 wks.

Samuel on the carousel...he isn't sure what to think.

Tuesday, June 30, 2009

Sam's Little Brother - Coming in September

Sam's First Haircut

I Love my Mama!

First cut is the deepest

Please disperse, there is nothing to see here

Halftime Break: Dum Dums!!!

Dum Dums are beginning to wear off

All Hades Breaks Loose

Ahh, Reward = rejuvenation by a refreshing fountain

Hit the dance floor, John Travolta