Tuesday, June 30, 2009

The Money Tree

I wish I had a money tree. Remember when you were a kid and you would talk and dream of a "money tree"? It would grow in your back yard and you could snip a little off and buy WHATEVER you wanted without having to hound mom and dad for a few bucks. Or remember when you wanted that really "sweet bike with shocks, pegs, lucky" (famous line from Napoleon Dynamite) your mom and dad would sweetly say to you "baby I would love to get that for you, but money doesn't grow on trees now does it?"

Well, Sometimes I think I AM a money tree! Well, most of us who are recovering our children would feel that way. A tree that is barren most days but you can sometimes see these tiny little buds growing. Wanna know what the first thing is that pops into our minds when we see those little tiny buds?? "Awesome, I can get those really sweet Jimmy Choos", or "I can FINALLY go upgrade my old computer", or "I really AM going to be able to pay my bills this month" or "Cool, I can have a Girls Night Out!!" NOPE, none of that!! What we think of is "Thank you Lord for providing and coming through for me on this journey!!! I can finally afford to send my son to ABA Therapy" "I can try Chelation, HBOT, TCM, MB12, Valtrex, PILL CAM, etc." "I can start setting aside trust money for when he gets older and I am no longer alive." That's what we think about.

Well I tell this story, because sometimes I feel like my tree has "just enough". We can do most of what we need to do, but the tree is still barren. Those tiny little buds when they start growing are quickly snapped up and the dream of that "new" treatment is gone. Today is one of those sorts of days. You know like when IKE hit Houston last year and tore the gentle flowers from our trees. Well, some of my little buds were snipped off today. Now let me stop and clarify again, I don't blog about money because we a looking for a handout or for you to feel pity for us. If you know The Eichenberger's, we are your average American family with a nice home, a nice car, and a little bit extra to go on a few vacations a year. But there are days on this journey when I feel like the sap is draining from the tree! And, like I have said before you gotta know the journey to appreciate the outcome. Two big blows in the "treatment budget" happened today.

First off, remember the fun pee story?? Well when we sent that off to the LAB we sent $99 and our insurance information. Awesome news, when I picked up the mail yesterday, there was a $500 check and an EOB from BCBS (insurance)! I'm thinking SWEET they covered it!! Woo hoo!! Now all I have to do is send the check to the LAB and that will be that. Well I picked the mail up today and there was a bill from that same LAB for $1,018. (To analyze pee?? You have GOT to be kidding me!!) Now we have paid $99 and have a $500 check to send them. So that leaves me with still owing????? Yep, about another $400!! What the heck!! I am an optimist, so I say to myself, well at least they covered $500, it could be worse, and I could be sending them another $900. But still, I had NO IDEA this was coming. So, snip snip snip from the money tree!!

Second, we got our follow up "notes" from our visit last week. I don't really know why they call them "notes" it's more like a "document" or "manual". It must have been 100 pages!! I sit down with my highlighter and a note pad to take "notes" (Yes, REAL notes that I can use and understand!!) As I get to the bottom of the page the VERY last line, says "please be sure to contact Anissa Webb to schedule your 6 week follow up." Holy COW!! ALREADY??? This guy costs $300/hr. I thought the follow up would be something like 3 months. You know long enough to work through all the "instructions" we were given. But it's all good, the bright side is we will have a chance to talk through everything and catch up on how the treatment is going. So it's a good thing, but snip, snip, snip again!

I leave you with one last note from the money tree....we sent off the claims to BCBS today and we need some fertilizer for our tree!! I like to think of prayers as fertilizer for our soul, helps us grow mentally and spiritually!! Plus it gives life, without it seeds wouldn't grow and flowers wouldn't bloom. So, tonight, tomorrow, Sunday whenever you say a little prayer, help us with some fertilizer and please PRAY PRAY PRAY that these get covered! If they do, we should get back around $600!! That would almost break even for the day!! Between the $400 to the LAB and another $300 to TH, that's $700, if we get $600 back we are only down about $100. That's not too shabby!!


Until next time.... peace, love, hope and prayers!

T

But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.


Matthew 6:33-34

Monday, June 29, 2009

Fowl isn't so Foul Anymore!!

Quick update....

In a previous post we talked about TH telling us we need more protein in his diet. HA! Have I not said the kid ONLY eats PBJ, Fruit, and bread products. There is NO WAY he is going to eat MEAT!! But, again, I love a good challenge, so here we go.

Friday 6/26-I decide I'll scramble up some eggs and just see if we will eat them. 2 eggs=about 14g protein! That's pretty darn good since he needs 50g and only gets about 6 from a PBJ and 6 from the Spencer Super Smoothie, and about 13 from an ANDI bar. So I REALLY needed this to work. I crack 2 eggs, scramble them up with a little almond milk and salt, then back to the Spongebob game we go....I offer a bite and get a funny face and a big fat "no" in return. (Well, Spencer has this really cute way of saying no, it's more like a "neow".) TV off, "Spencer take a bite and you can play your game" mouth open, eggs in, funny face, and success!! He took the rest of the eggs without a single complaint! He MAY have even liked them, I'm not sure about that, but maybe? (that's me being hopeful)

Saturday 6/27--eggs for dinner again....no problem, Spongebob is my friend!!

Sunday 6/28--for dinner tonight I made Mike and Parker homemade Chicken Quesadillas. I decided to bake an extra chicken breast and see if we would be lucky enough to have the same success as we did with eggs. 4oz chicken has about 22g of protein, so you can imagine how much I REALLY wanted him to eat the chicken. I'm a little (okay A LOT) controlling when it comes to this intervention with Spencer. As I am flitting about in the kitchen, preparing myself for the great chicken debut, Mike says to me "I'm going to give him his chicken." Oh....okay, I'm thinking! This makes me a little nervous, because I REALLY want him to eat the chicken and I have a hard time handing over the reigns!! But I do have faith in my man, so I cut the chicken up on a plate and hand it off. (Well, the controlling me decided I had to be in there too "just in case") Wouldn't you know it, success!! He ate it, and Mike was the one who gave it to him!!

What did I learn today....gotta work on my control issues! and Spencer doesn't think Fowl is so Foul anymore!

Until next time.....peace, love, hope and prayers!

T

Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him. James 1:12

Saturday, June 27, 2009

Cooking with Grammy

Let's back up a bit shall we....

So when we first were told to start the diet, I was VERY overwhelmed with what to offer Spencer. His diet basically consisted of waffles, bread, pancakes, oatmeal square, poptarts, ice cream, yogurt, PBJ sandwich, grilled cheese, milk and fruit. THAT'S IT! As you can tell, it was all ridden with the things he can no longer have. What in the world and I going to feed this boy!? Well, being the forever optimist that I am, I think to myself, YEA he LOVES fruit, I can just give him fruit. Okay, after a few days of a fruit diet, I started to get concerned that ALL he was eating is fruit. Well, fruit is good for you and all, but can a kid live on fruit alone? I say no.

So I do what any daughter would do....I say with a BIG smile on my face (and the Sullivan nod)...."Mom, I have a project for you!!" If you know my mother, you know that she LOVES, THRIVES OFF OF and LIVES for projects! For Pete's sake she remodeled her entire kitchen in the middle of some really brutal Chemo! She is also a bit stubborn and loves a good challenge. You can't tell my mom something isn't possible, because she WILL find a way! She's really AWESOME like that. (LOVE YOU MOM!!)

I give her the run down of the diet and ask her if she wouldn't mind, in her spare time, trying some recipes for me. Oh LORD, did she try some recipes!! Within 2 days she made him a wonderful "wheat" looking bread, choked full of grains and stuff. It smelled awesome and he loved it. She also sent us home with some homemade GFCF chocolate chip cookies. They tasted a little "off" to me, but he loved them! The next day my older sister was coming to her house to "hang out" with her. Rather than having a girls day and truly hanging out, they spent the afternoon experimenting with a white bread recipe in a bread machine. I really should let her tell these stories, because I'm not real sure what all went down. By the next time I saw her, she had gone out and purchased a bread machine (the first one she used was borrowed from a neighbor), tried three different recipes, returned the bread machine and said, they weren't "fit to eat". But alas, she did have for me the most wonderful white bread, made the "old fashioned" way, in the oven. It looked awesome, and tasted pretty good. If you have ever tasted GFCF stuff, it all has a very slight "off" flavor, but little Lou (that's what we call Spencer sometimes) doesn't mind it a bit! At this point, I'm starting to feel very hopefully that we CAN have "bread" again!!

Today, I sit with freezer FULL of GFCF treats for Spencer made by the loving hands of Grammy. They include:
Strawberry Bread
Zucchini Bread (sounds weird, but is DELICIOUS, sort of like a spice bread)
Orange Cranberry Muffins
Chocolate Brownies
Chocolate Chip Cookies (Version 2)

All these are very tasty and if anyone reading this is GFCF, email me I will be happy to send the recipe your way.

This post really is a tribute to my awesome mom!! Without her helping hand (and a little push now and then) I would have given up a LONG time ago! Mom, thanks so much for all you have been to me growing up. You have the spirit of a fighter and I do to thanks to you! You and Dad have always made us feel we could do anything and to NEVER give up! Spencer is 8 and I know many people may think he is too old to recover, but I will not give up!

Until next time, peace, love, hope and prayers!

T

So do not fear, for I am with you;do not be dismayed, for I am your God.I will strengthen you and help you;I will uphold you with my righteous right hand. Isaiah 41:10

Friday, June 26, 2009

Thoughtful House Part 2

The story continues....

Wednesday, June 24th we had our first face to face appointment with TH. Dropped Parker off at Basketball camp at 8:15 and headed to Austin. Easy drive. Anyone who knows Spencer very well can attest that he is LAID back and content, as long as he has his "toys". (Any sort of video game or DVD player and movies.)

After a quick lunch at Panera we were there for our first appointment at 11:30 with our nutritionist, Dierdre. She's a little bit of a "earth mother", but what do you expect? Austin, nutrition, biomed....you get the point. Anyway, we ran through what's been going on with the diet and she was VERY HAPPY with us. So, feeling all pumped up and confident we left. Not much else to work on there, well except for going all natural and organic and removing food coloring, adding more water into his diet and trying to get him to eat more proteins. What? I thought we were doing good? So, back to the Spongebob game we go. We plan to start with scrambled eggs and use the same bribery we used with the smoothie. Time spent with Dierdre-90 minutes, Total cost of visit-$292.

Next Appt, Lucas Ramirez, he's a Nurse Practitioner that works with Dr. Jepsen the BioMed Dr. at TH. You can't get in to see Jepsen, he has too many patients. So we get the next best thing. I was a little disappointed at first that we don't get to see "The Man". But all my disappointment was put to bed once we met Lucas, he's a pretty cool dude. He has a son on the spectrum who is recovered (for the most part) from doing all this biomed stuff. We went through a parent interview, reviewed his test results. Okay gotta stop here and tell you about the tests.

So after our first phone consult, these 2 boxes came in the mail one was for a urine test one for a stool test. I am so dreading this that I put it off for about 3 weeks, then I HAVE to get it done to get the results back in time for our appointments on the 24th. Once I mustered up the energy and mindset to get it done, I get started!

First, the pee test, okay, we have done this in the hospital before. They give you a big bowl thing to put in the potty to catch the pee then transfer it to a cup. NOT THIS TIME!! We have this little bitty cup with an opening the size of a golf ball that I have to "catch" the pee in and then transfer it into this tiny itty bitty test tube with out spilling any and you have to do it fast because (the box says) light will ruin the specimen. Now it also has to be the first pee of the day. Oh lordy me, the pressure!! I do NOT want to have to start all over again. Now Spencer isn't potty trained, so you can imagine how this went down. I drug the poor baby out of bed at 6:30 am while we was good and asleep so he wouldn't have gone in his pull up. Still sleepy, sucking his finger, with his blankey love I put him on the potty at the ready with my little cup! Waiting, waiting waiting, here comes, he starts going, looks down and sees the little cup and stops the flow, I have only about a thimble full....CRAP!! "Come on buddy, it's okay, go potty." I say and he tentatively starts going again. We have success, I managed to catch enough pee to fill the tubes and get it sent off.

Now, maybe I should spare you the details of the poop test, but you gotta know the journey to appreciate the outcomes! LOL!! So, here we go....I'm thinking, this will be a piece of cake. Spencer has good poop consistency and he does it in his pull up, so no biggie right? WRONG!! First off, these tests have to be taken and sent to the LAB within 24 hours, via FedEx and they don't pay for weekend service. So, it's Wed, I think alright here we go....WRONG!! Wouldn't you know (well some of you know Spencer well enough that this isn't a surprise) he didn't poop for 2 days! AGH!! So, now we have to wait over the weekend and try again on Monday. Well, he pooped like a CHAMP over the weekend! I'm thinking he's all pooped out and we are going to have to wait days to get poop again!! Will I get this test out and results back in time? Damn me for procrastinating! I was wrong, Monday comes and we have poop! Yea! Now they give you this little bitty tiny scoopy thing to scoop it into 2 little itty bitty test tubes and they want you to take "several" samples within the poop. YUCK!! Through much disgust and gagging on my part I got it done and sent to the LAB.

So that's the testing story, I look back on it and laugh, but more importantly, after our visit on Wed, I am SO GLAD I made it through. You wouldn't believe how much you can tell about a person from their Poop! Testing Cost-Urine-$99, Stool-$219

So we review the test results. There are 4 good bacteria and 4 bad bacteria that they tested for in his gut. Spencer has only 2 of the good bacteria and 4 bad ones, and they are THROUGH the ROOF!! Think of it as he has 4 infections in his tummy. They also test for yeast overgrowth. It showed up as non existent "in" his poop test, but it did show up "on" his poop. What's the difference?? I dunno, but whatever. So, we have to take 2 prescriptions to rid his body of the bad bacteria, for 3 weeks. Bactrim and Flagyl. Well just like anytime you take an antibiotic you risk a yeast infection. There's a 90% chance the yeast will start to take over in his gut and cause all sorts of problems. So once we finish the the other 2 then we start diflucan for 3 weeks. On top of these three we have to start a Priobiotic that will help boost the good bacteria so they can fight off the bad bacteria once we get rid of them. Once all of that is done, we have to add in another 4 supplements, Magnesium Citrate, Zinc Citrate, Fish Oil, and Vitamin C. That's a grand total of 7 supplements that are added to the Spencer Super Smoothie everyday. Technically he explained what all these do, but I have no idea how to explain how they all work, so we won't go there. We will just pray they do what they are supposed to do.

Once we went over all that he tells us he needs a daily injection of B12 in the rump! WHAT!! I have to give him a shot EVERYday!! So then he shows us this power point on how to give a shot, and tells us "be sure not to go to deep and get it into his muscle tissue, because it will move through his body faster and he will be a crazy wild maniac!" Oh, you can bet I won't make that mistake!! I'm thinking to myself, okay, at least I have about 6 weeks before we have to start that! Look for a future post the day we have our first injection, I'm sure it will be a blast!

After we are done with Lucas, we check out. The lady at the desk says, that will be $532. Ouch! Time spent with Lucas 90 minutes. We stop off in the nutrition store and pick up 20 ANDI bars (these are super protein bars that he LOVES and gives him lots of good stuff!!) and a bottle of ProBiotics. Total cost $90.

Total Cost of visit=$913
Total Cost of Testing=$318
Previous Phone Consults=$342 (Intake $50, Nutrition Consult $292)
Grand Total Spent So Far=$1,573
Amount Covered by Insurance=ZERO!
Possible Recovery= PRICELESS!!

(Costs aren't put here to offend or ask for help, I think it's important to raise awareness about the lack of insurance support for treating autism. Autism is an epidemic and families are having to sell off everything they own to recover their children. We are lucky we have the means to pay and have much support from family!! Look for a running total with my posts, keeps they eye on the prize, recovery is priceless!!)

Until next time...peace, love, hope and prayers!

T

Because he is at my right hand, I will not be shaken. Psalms 16:8

Thursday, June 25, 2009

Thoughtful House Journey Part 1

Since we are starting to blog in the middle of the story, let me just give a brief history lesson....

Spencer was dx with Autism January 2004, he was 2 years 10 months at the time. He's 8 years old now. We have tried all sorts of interventions but we were always leery of biomed. You know witch doctor, crazy hippies, herbs and potions is what always popped into my mind. But since we are still non-verbal, not potty trained and seem to be getting no where fast, I am at a point that I will let those crazy hippies and witch doctors do their thing with my child to get him well. (BTW-I really don't think they are crazy witchdoctor hippies anymore.) So, we are going down that road, we called Thoughtful House in Austin and started the process in early April, 2009.

April 29th, 2009 we had a phone consult with the nutritionist and were put on the GFCF diet. I won't bore you with all the details and all the reasons why it works. In a nutshell it is a Gluten Free, Casein Free diet, which basically means Spencer can no longer have anything that is made with, from, or derived from Wheat and Milk. Imagine almost everything in your diet has one if not both of these ingredients!!

So off we went....and I gotta say I was not too thrilled about it. I had heard about the diet in the past and thought, there is NO WAY I could pull this off. But, we made the concious decision to give this a try so here we go.

May 2, we removed dairy from his diet. Pretty easy, just started giving him Almond Milk and stopped giving him cheese, yogurt, ice cream etc. He didn't seem to miss it and we saw great improvement in his big bloated tummy. For once in his life he almost looked like he had 6 pack abs!

Over the next few weeks, it was all about research! Finding how I could replace all the wheat products he loves so much. Found great information on the TACA website (that's Jenny McCarthy's group).

May 11, we went gluten free! Saw changes almost immediately. Some people don't notice it too much, it's very subtle, but it is there and you NOTICE if you live with him daily. For one, he "looks" at us more. I caught him one day when I was riding in the back seat with him staring at me. It was really kind of creepy and shocking, he has never looked at me that way before. Second, he follows directions a lot better. We used to have a heck of a time getting him away from the PS2 in the morning and on to the bus. Just days after starting the diet, I could say "Spencer your bus is here, please turn off your game, and get your backpack." And he WOULD DO IT!! He would even go as far as letting himself out the front door and walk to the bus by himself! WHOA!! (I am in noway impling he is some super compliant kid, he is 8 years old and kids will do what kids want to do 90% of the time, he is no exception.)

Part of this step in the journey, it was suggested that we start giving him a smoothie. YEA RIGHT!! The kid who ONLY drinks milk or water! You have got to be kidding me, there is NO WAY he will drink a smoothie. But alas, I was challenged and I love a good challenge. Using his Spongebob PS2 game I sat in the floor with a smoothie (just strawberries, banana and blueberries) and proceeded to feed it to him. I got a big fat NO when I tried to give him the first bite. So, I turned off the TV..."Spencer take a bite and you can play your game" He took a bite! and it went like that for the first smoothie, tv off, bite, tv back on, tv off, bite, tv back on. Well, I am proud to say that today, I say "Spencer do you want a smoothie?" "Ess" (That's yes in Spencer talk) We proceed to the kitchen sit at the island and eat the entire smoothie (No bribery needed). Go SPENCER! Now the gross part, the smoothie today is a far cry from that first yummy smoothie! Who doesn't love a strawberry/banana smoother! We refer to it now as Spencer's Super Smoothie (he has 2 each day):
5 baby carrots
5 frozen strawberries
1/4 c blueberries
1/4c chopped frozen broccoli
1 scoop garbanzon bean powder (protein)-GROSS!
1/2t calcium
1/4t vitaspectrum (this stuff tastes NASTY)
1 probiotic pill
Sounds yummy huh?? :) Can you believe he eats this stuff willingly and actually prefers it over other regular food! Good thing, it's the easiest way to get in all those supplements.

Today, I can say the diet isn't really that hard if you have a Whole Foods, HEB, Central Market or other big chain grocer that carries organic products, you can pretty much find anything you need. It is time consuming...every Sunday I spend about 3 hours in the kitchen preparing food for the upcoming week for him. (Making bread, waffles, cookies, cutting fruit and veggies, etc.) It's a small price to pay for him to be healthy, plus I am learning so much about cooking/baking. (I don't cook and I never really even liked to cook.)


We went back to Thoughtful House yesterday and will blog about it tomorrow, too tired right now and lots to think about.