3.01.2011

{just a little bit of} H-E-double-hockey-sticks

Okay, Yes. I know. It's a strong word. Too strong of a word, really, to describe our life. BUT, there have been some times this week I have felt like I was living in it. The moments are fleeting and surrounded by many small miracles and happy moments, so, yeah, it's really WAY TOO STRONG OF A WORD. But, dang it, those moments seem to last a LONG time when you're living through them.
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This week our family has suffered from: bronchitis (me - 3 days on an antibiotic and inhaler and today is the first day I'm feeling okay, since last Monday) pink eye (just Landon, so far. can we keep it that way? please?) colds (the Littles, of course.) and a 24 hour stomach virus - the "runny" kind (first Isaac and Ella, now me, possibly Cameron) DON'T COME TO OUR HOUSE - IT'S THE BLACK PLAGUE!!! (but we're on the mend, so come next week; we'll be better!)
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As if that's not hard to deal with ... We got some news. And it's really not good. Remember this post? Thankfully, since then we've found a new allergist that was willing to take Austin on as a patient, even though she doesn't take our insurance - and our insurance approved her charges anyway. phew! But... the BEST PART is...SHE IS HELPING HIM... Oh, this is an answer to prayer. For over a year, I've known something was more wrong with Austin but couldn't figure it out on my own and couldn't get a doctor to help me. FINALLY, I feel like we have the support we need to figure out how to help Austin.
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So, here's the verdict. After re-testing Austin, and doing some more tests to different antibodies (did you know there's two allergy-caused kinds? neither did I. question: how come the other docs didn't do this test?! just wondering) in a regular blood test and an "inhalant" skin test we've discovered 6 new allergies; 2 to foods and the rest environmental. Blood tests also showed that Austin was pretty deficient in some vitamins, especially vitamin D, which is proven to make allergies worse. The deficiencies suggest that his body hasn't been absorbing nutrients from his food. We learned that the "BIG" allergies include dust, cats, dogs, dairy, nuts, soy, eggs. These are all "class IV" or higher, meaning they cause significant immune response (reactions that include swelling and hives, itchy skin and eczema, stomach upset). He also shows sensitivity to some other things, including gluten.
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So, here's the treatment plan for now. First things first: vitamin D supplements. check. that one was easy. (so many people have suggested kinesiology - technically called APPLIED KINESIOLOGY... we're not there yet. Austin's immune system is going so "haywire" right now that any type of desensitizing him is just a bad idea...but maybe in the future. To be honest, there's bigger problems right now.)
First a bit of background: remember I'm no doctor so, these terms and explanations are not text book, just my understanding
All of his allergies together make up a total "allergy load". If the allergen load is small, the body can handle small amounts of an allergy - one reason that two people with the same grass allergy handle hay fever season differently. Austin has been getting BOMBARDED with certain allergens, especially SOY. We completely replaced every bit of dairy in his diet with soy, plus there is soy in all kinds of random places - even the multivitamins I had given him (did you know Gatorade powder has soy in it? Seriously.) This gave him a big allergy load. So then, when the seasonal allergies hit, or he played at a house with a dog, or we let him eat a piece of pizza thinking we could just give him a dose of Benedryl, his allergy load increased even more, until his immune system couldn't handle it and started attacking other "harmless" things in his blood.
back to treatment:
So, for now we have to focus on repairing his immune system and getting his body properly absorbing nutrients.
We have eliminated everything he's allergic or sensitive to, including gluten and soy. {We are going to start some "sub lingual drops" (like allergy shots) for the seasonal and environmental allergies; which will in turn lower his allergy load, eventually.}
We are also using a "rotating diet." Since his immune system seems to be ready to attack, we are rotating all of his starches, and I'm even being [a little less]careful to rotate certain high allergy fruits (like strawberries, bananas, and apples). What this means is that on a given day he can have only one type of grain or starch - either rice, corn, oats or potato - and then he can't have that starch again for four days. This keeps his blood from being "overloaded" with any one type of food, making his immune system feel "safe" and preventing a new food allergy.
In about six months we can start adding in certain foods in small amounts at a time. I think we'll continue rotating to be safe.
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A trip to Boise Co-Op (Health Food Store) and $200.00 later and I think, okay I can handle this...but that took a couple days, because I was sick, and I had to research to figure out what to buy. So in the mean time... well, here's the story from the beginning (yes, I know, long winded tonight, I am - and a bit like Yoda. ha :) )

Cameron went to the appointment with Austin because I was too sick to do just about anything. When he told me the news I cried...only for a minute, because that doesn't help solve the problem...but it does give me clarity sometimes, and so does vacuuming. So that's what I did next; vacuumed the whole house, I think it helps me because I can't hear the kids and my mind can just think on it's own for a minute, plus less dust is good for Austin, so I vacuum almost daily. Anyway, after that I decided to look through my cupboards. Wow, this is going to be tough. Cameron stayed in Boise to take Austin out to lunch for his "last pizza" for a while, and I rallied, woke the little kids up from naps and went to Walmart, channelling the Little Engine that Could, I can figure out what to make for dinner, and I can make it through the store without falling over... I can do this.

I came up with... what to call it? Italian Vegetable Sausage Soup? Chunky Minestrone? It's not too different then something we would normally eat. Just changed the chicken broth to GF chicken stock, left out the noodles, added a couple more veggies, and didn't serve it with these (my favorite breadsticks)

Believe it or not that pot of soup gave me confidence that I can do this pretty easily and feed my whole family ONE meal. I CAN create a place where Austin will not feel left out. I was proud of myself, for a minute, and then I went right to bed... should've gone to get an antibiotic that night instead of waiting two more days....

So we carried on, with no bread in sight. My plans to make it were ruined with the realization that Gluten Free baking requires a mixture of flours to work. Everything I've read (and I've been at this computer for HOURS researching allergen-free cooking) has mentioned that replacing wheat flour with one other flour will not work (except for almond and coconut flour - he can't have either - okay, if you wanna know; it's cuz the coconut is in the legume family and since he's had SEVERE reactions to 3 members of that family already, coconuts out for now.) So, I was again discouraged, since we aren't supposed to mix any grains or starches right now. But we were doing okay, and Austin seemed to handling it all exceptionally well.

On day three, though, he came home from school, asked for a snack and started crying, "can't I at least have a cracker?!" Not good. I called the doc's office and talked this over with the nurse. As long as we are EXTREMELY careful to limit this to no more than twice a week, I can bake with mixed flours. I will try to use the majority of one type of flour (like rice flour, for example) and only use other flours as minimally as possible to get a good baking result. I was ready to experiment. And since it was "oat day" I found a recipe for oatmeal cookies and Austin and I whipped out a batch. We decreased the rice flour and potato starch and increased the oat flour so the bulk of the cookie was made with oat flour, and success.
It wasn't a cracker, but it satisfied us all. Seriously, they were amazing, and not even an egg. Winner. Phew. I have at least one Gluten Free, eggless, nondairy, no nut, mostly one type of flour recipe

And today, these little gems came in the mail. Austin went through TWO cookbooks, exclaiming, I can have this?! YES! oh joy
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The biggest challenge has been, and I think it will continue to be, getting organized to the point that I can actually feed him without it being a HUGE process at every meal. Because of the rotation, it's just very complicated to feed him (we had tacos tonight - he can't eat a taco shell again for four days...but I can freeze the meat and give him tacos for lunch on the next "corn day" or I could let him eat the meat with salad tomorrow but he's not really cool with that, "no taco shell for my taco mom?!")
So there's just SO SO much planning. I've made a calender to fill out and plan meals for the month, but, not only does the planning take time, I have to get him fed three/four times a day so I haven't been able to plan. I'm confident I'll get into a routine, though, and I'm hoping to soon have a freezer full of treats and breads and things for lunches, so I can eventually only have to "cook" one meal a day again. Gone are my chicken nugget or tuna sandwich for lunch days. At least for now.
But IT IS WORTH IT
I know the lighting is different, but I think you can still tell. He looks SO much healthier, I am amazed. His skin is no longer ashen, his lips are pink, instead of white and puffy, his dark circles - they are SIGNIFICANTLY lighter. I purposely didn't photoshop the pictures to see the differences better. I'll say it again, I am amazed... and so happy. What you don't see: it took 2 days and he told me he wasn't itchy. His back doesn't feel like sandpaper anymore. And his behavior has improved so much - he acted like a...popcorn kernel about to pop: agitated and crazy and UNable to stay still. He's still a little boy that loves to run and jump but he CAN sit still and the aggressive agitation edge he had is completely gone, leaving instead, just him.


There's some other aspects of all of this to consider too, though. His psychological health too. His brain development is at a place right now that is shaping the big boy and man he will become. We must walk a fine line of enough love and support and not too much indulgence. As in, we must accept his feelings and give him a place he can share them. We must help him realize that it's not his fault. We must never make caring for him feel like it's a burden to us. But we can't over react when he's sad he didn't get a cupcake at school and go buy him a new toy or give him 10 of something he can have or let him get out of a chore, because he could develop the attitude that the "world owes him something" because he can't eat bread.

It's all such a balancing act. I feel like I walk a tightrope. Lets not forget that I have three other SWEET babies that need me too. And a husband (can we go on a date soon?!) to spend time with. And myself. Sometimes I wonder if I'm still me, or if I'm just a mom. And while I can't even stomach the thought of not being what my kids need me to be, it'd be nice to just be me just once in a while.
SO, I walk my tightrope, GLADLY because I do know how blessed I am. And I do love this life and the people that are in it. And it's really not even close to feeling like H-E-double-hockey-sticks, but it's hard sometimes. So I pray that I am strong enough. And I pray I wont fall off that tightrope, knowing that I will. So I pray more, hoping that when I do fall, I'll know how to get back on and maybe I'll stay on longer the next time.

13 comments:

csmedley8157 said...

Kendra, I tried to call you today to ask you if you wanted a roller hockey helmet? Then you start talking about Hockey sticks on your blog. Not that that’s anything really, but a little thought of how you are really always on my mind, and so are those sweet little babies. I love them and him and you, and I know it is hard, but you are doing so well and better than anyone can even begin to do. You are amazing. Oh and by the way... do you want that helmet?

Jenn S said...

Oh my hell, Kendra! Just say it...you deserve to! I am soooo soooo sooo sorry you and Cameron and Austin have all this going on! Really my heart broke as I read your post! You are amazing and admired by us all! I love how you share your thoughts and feelings on your blog! I need to be better about that! You are all in my thoughts and prayers!

runningfan said...

Wow, Kendra. You're amazing! You can do this!!

Nancy K said...

It sounds so overwhelming.
I've thought a lot about your last post about Austin.
And I've thought a lot about how I'm glad I got to know you in Iowa.

Maynards said...

Oh my goodness! You are amazing Kendra. I would have no clue where to even start. Austin is so blessed to have such an amazing mother who knows how to help him! I cannot believe what a week you had. That sounds so hard.
You are right, the change in Austin's appearance is truly amazing. He looks great. Nice job!

Emily said...

I'm so glad you've found a good Dr. that is helping to figure out a way to help Ausitn. I know it's overwhelming right now, but once you get a few menus down that you can rotate through I'm sure things will fall into place and work smoothly, and if Austin isn't having flare-ups in his allergies he'll feel so much better! I'm thinking of you guys!!

Claire seems to be following in Austin's footprints. We've been dealing with a horrible rash turned to eczema that is all over her body. From inside her ears, on on her face to her ankles and everywhere in between. Her Dr. thinks it's allergy related, but said she can't be allergy tested before age 2 or it isn't acurate? So she's on a second round of prednisone for the month, plus daily Claritin and steroid cream. She still doesn't eat so I'm worried it's something I'm eating and she'd getting through the breastmilk? Idk, very overwhelming at this point, I wish you were still across the street so I could come talk to you and learn all about figuring out this allergy thing!

Colleen said...

What a wonderful, loving mother you are, Kendra! It does sound so completely overwhelming and I know gluten and soy are in nearly everything, but with cutting out all the processed stuff that those are added to you are not only going to create a healthier Austin, you are going to be a healthier family! Hang in there, it will get easier. We all just have to take these struggles day by day, right?! :)

Jessie said...

HOLY HELL Kendra!
I love you...
I am AMAZED by you...
I wish I was closer so I could TRY to help in some way...
Saying prayers!
-Jess

Andrea said...

Was reading this blog the other day and thought of you: http://thestradtnerfamily.com/findingournewnormal/?p=422

I am sending you lots of virtual hugs and many prayers for strength and sanity. You can do this, Kendra!

You have always been super-mom, and I know you will continue to be.

I can totally see the difference in the pictures of Austin. So glad you are on the path to keeping him healthy.

Andrea said...

Oh ya- a few more resources I found: (You might already know about them :) )

http://www.kidswithfoodallergies.org/

http://www.dishtoweldiaries.com/

http://www.foodallergy.org/

Robs said...

Kendra! You are amazing. I want to cry for both you and Austin. He's so lucky to have such a wonderful mom. I cannot even imagine how overwhelmed you must be trying to figure all of this out and being sick at the same time! I cannot believe how much better he looks after just 4 days on the diet. Hang in there! Austin is so lucky to have such a great mom!

Adri said...

Wow, Kendra! So much to think about! You are doing such an amazing job. Austin is one lucky boy who has a momma who will dig and search and create so he can have a cookie. (They looked fabulous, too!) Kiss his cute little curly top for us. And, maybe he'd like to try Kate's newest favorite after-school snack: frozen grapes!

:)

Good luck!

Kasey said...

OH Kendra. I am SO SORRY! The whole time I was reading this post, all I could think of was HOW AMAZING of a mom/person you are. I love you. And I REALLY miss you.