Little Hearts Big Smiles

So, Little Hearts Big Smiles is near and dear to my heart. I co-founded this organization in 2006 with Holly Batton. We were two moms with young daughter's that had feeding tubes that were sick little girls. We knew that we could reach out to other moms to support us and for us to show support to. We had 4 meetings before anyone came. We almost didn't have our 5th meeting because we thought maybe this wasn't a need in our community. Two new moms came to our 5th meeting and from there we've grown into a non profit organization with a mission for inclusion and awareness. We partnered with the Clinton County Foundation and created a board of directors in 2008. We also decided at that time that there is a need in our community for an all inclusive playground. So, in addition to our IEP trainings, monthly activities for the kids, outreach to the community and support group meetings we embarked on a campaign to raise half a million dollars for a playground. We have created a governing board to oversee the day to day operations of our finance, fundraising, grant writing, planning and publicity committees. We became incorporated in 2011 and are on our way to being a stand alone 501 c3 organization. We have big plans for LHBS, we would like to have charter offices in other communities so that we can reach an ever growing population of families raising children with special needs.

Each year we provide an opportunity for the kids to go horseback riding. In Fall 2010, a friend from church, Dawn Martin and her company Martin Quarter Horses invited us out to ride. It was a wonderful afternoon for the kids! Thanks Dawn!

Another annual event is going to visit a pumpkin patch. In 2010 Bonnybrook Farms in Clarksville, Ohio invited us out for a fun filled day! Each of the kids got free tickets to do everything at the farm including visiting the horse barn, feeding catfish, picking pumpkins and an awesome hayride in the 300 acre woods! This is part of our group. We had 40 people attending that day!

This wheelchair swing is one of the most exciting features of our playground. This swing will be housed on one of the swing bays below. Thanks to Martinsville Lion's Club for donating this swing!

Phase I - I am excited to mention that we have raised enough money for this phase of the playground and we are on track to have the equipment in the ground by late April, Early May!

If we raise an additional $15,000 for the ground surfacing..swings like these will go in with Phase I! The only difference will be the wheelchair swing and some seated belted swings along with the swings in the photo!

Phase 2 draft. A toddler Weevos section! Our original scope did not include a toddler area so this is an exciting addition to the playground. I had the opportunity to sit in on a planning meeting this week with planning chairperson Jessie Woodruff to help choose the pieces for phases 3 and 4. Since I'm usually busy with fundraising events and publicity I don't make it to the planning meetings. It was very very exciting to get to plan the next phases of the playground!

So, if you would like to know how to help with the playground go to http://www.littleheartsbigsmiles.org/

Brei's Blenderized Diet

Preparations are underway for a day of blending! Prior to this photo we have been to Whole Foods, Trader Joe's and Kroger Marketplace in Liberty TWP or Lebanon, boiled down 2 organic chickens, 15 beets, 15 sweet potatos, 2 boxes of quinoa, and 2 boxes of gluten free pasta. Hubby is busy cutting organic carrots and apples and Baylie is peeling bananas. I'd like to mention that Kroger had some really great deals this week so we scored the Almond milk for less than a buck with coupons and we have enough milk in the freezer for 2 more months of this recipe. We found Bossa Nova Acai marked down at the marketplace and I had $1.00 off coupons which made them 29 cents each! This was heavenly to me because the juice is a small container and we need 4 of them and it's usually $3.00 each! The quinoa and pasta are rarely ever on sale and they are around $4.00 a box. There were deals on fruits and veggies this week so overall I spent $220.00 on a months worth of her food which is about half of what we usually spend. I could just kiss Kroger Co. for saving us so much money on her food this month!

My treat to myself was this HealthMaster. I waited for it to go on sale and Kohl's and used my 30% coupon to get a great deal! I even got $30.00 in Kohl's Cash back and bought some shoes on a later date! Anyway, this is the 8th and final blender....hopefully.

Hubby always chops faster than I can blend so he takes a break to read the book that I started and apparently he's finishing. Schuyler's Monster is a book about a girl with Polymicrogyria. It's a different form than Brei's but hubby said it's still very insightful. He read it in a day. It will take me a week...maybe even two. :)

You can see in the background that he stays ahead of me throughout the day and continues to read. It takes 3 hours of blending but we are halfway there. You can see the jars piling up in the back. We really need to hurry because we need to pick the kids up from school and we have Cub Scouts right after. We are the den leaders so...well you know....duty calls!

This is 40 days worth of Blenderized Food. We have a special "gluten/casein free" freezer where we store all of her foods.

This is a days worth of food already dosed out. Hubby syringes everything out the night before so that the only thing we have to do in the morning before school is prep and dose out the meds. The school nurse is amazing so we send everything in a bag and she takes care of the rest.

By the way - we finished in time, made it to school on time to pick up the kids...gathered up our scouts along with scouts from Den 9 and rehearsed 2 plays for the banquet on Sunday. We had been in the kitchen for so long that on the way home from scouts we decided to NOT go home and instead go to #1 China Buffet to see our friend Billy Kong and eat some yummy grub. My kids were thankful...so was I. If you ever visit Wilmington Ohio you have to make a stop in to #1 China Buffet. It's simply the best.

If you are new to my blog you can read previous posts on Supplements to see her meds schedule and the GF/CF Recipe to see how we got to this blenderized diet routine.

Please feel free to leave comments with questions and I can go into more details.

Milestones

I've shared a lot with you about Breianna's nutritional journey to health. I feel compelled to elaborate more on Breianna's developmental journey. When Brei was born mommy instincts set in immediately that something wasn't right, however, I didn't know what wasn't right so I played the wait and see game along with Brei's pediatrician. "Let's wait and see how she does."... "Maybe she'll grow out of it."..."Come back in a few days and we'll think this through some more." ..."She's just delayed." "Failure to thrive." "Poor feeding."....etc etc. So at 5 months Brei hadn't met any milestones and I was getting ancy....However, if you remember from her nutritional journey to health, I was overly consumed with just keeping her alive and trying to get her to eat....So at 7 months when we started meeting with all the specialists, they promised me that once we met her nutritional deficits the developmental ones would catch up.....I believed them....I laugh about it now because I know better. There is no catching up when you are that behind and your brain hasn't received the nutrition needed to keep going, let alone help you reach developmental milestones. I was just so hopeful......

So - We reached the age of one and Brei was barely sitting up....we had been working with our local Help Me Grow, Early Intervention, In home OT and PT and were were also going to Children's Hospital for OT, PT and SPT. Barry's insurance was really good at the time and they actually paid for us to get 2 of each therapy a week. I look back now and mourn the loss of that insurance.

We were driving....A LOT! I mean, I think we were at Children's Hospital 4 days a week on average just for therapies and follow ups, that didn't even count feeding team, Neuro, Genetics, GI, Developmental and other various specialities. I guess I thought if I push really hard she will catch up, we'll get a reason for all this, fix it and move on with our lives. This is just a small bump in the road. I think deep down I knew this was the new norm in our lives, I just wasn't really ready to face it. So, I chose to put all of my energy into therapies, stretching, exercises, more therapies, feeding schedules and anything else the docs and therapists told me to do.

Brei hated all of it. She was so defensive to touch that any of it sent her over the edge. But we had to get through it, get her to the other side somehow. I mean, you could barely hold her without her shrieking. That's when I first learned about Sensory Processing Disorders and what those words would mean in my life and more importantly, what they would mean for Brei's development. She was a sensory seeker, meaning SHE had to touch everything, but she didn't want to be touched. She especially didn't want her face touched. (It took until she was 4 before she would even let me in her mouth with a toothbrush). We learned right away that we had to get in to an OT who specialized in Sensory Processing Disorders. That person is Aurora and we waited for 8 months to get in with her. Barry and I have always selected the very best therapists for our daughter and Aurora was the best there is. So we waited for her to treat our daughter and teach us how to help her.

We started learning terms like "brushing" and "sensory diets" and "desensitize" and "sensory motor" and "motor planning". Aurora got our kid, I mean she's teaching me what I knew I needed to know but I just didn't have the means to know. If we can help Brei understand her place in the world around her, it won't be so big and overwhelming and then she can flourish in other areas of development like social and gross motor.

So I'll start with gross motor. Wow! Delays, big delays. But, nothing we can't overcome with lots and lots of exercises and therapies. We selected PT's who were tough, bulldog types. We didn't want people who felt sorry for Brei and thought she was just so cute that they couldn't make her cry. We wanted therapists who would work Brei until she cried. We felt like it was a successful hour if Brei cried for at least 30 minutes of the session because that meant that progress was being made. We were religious with the home exercises. Our house had been converted into a makeshift rehabilitation center. We had equipment everywhere. So, Brei cried...a lot, at home too :) But it was for her own good. We were going to get her to a place where she could move around on her own and pick up things on her own and eventually maybe even walk. How about that....we decided that Brei was going to walk whether she liked it or not. So we set out on this mission like it was life or death or something. I think I was on the mission and my husband was actually just supporting my insanity. Either way, he was by my side every step of the way. So Brei started crawling into her 2nd year and she crawled for a very very very long time. In fact, she didn't grow and crawled for so stinking long that ALL of her clothes had holes in the knees. I mean, she was in 12 months clothes until she was almost 3 so needless to say her clothes got a lot of wear and tear. :)

I get sidetracked easily so bear with me. So, once we had Brei crawling the daunting task was to get her trunk and core stable enough to bring her to stand. Brei has a very weak trunk and she's extremely unstable on her feet so this was quite something for her to accomplish. We knew if she could master that then she could use a walker to get virtually anywhere and that would be huge in our quest to get her walking someday. So PT goals changed and we learned a whole slew of ways to help her with trunk stability, core strength and leg stretches that would help her get up on her feet. This stuff made Brei downright angry, she has poor range of motion in her ankles and very limited dorsiflexion to this day so back then it was actually very very painful for her to do these exercises. We started slow...well, by my standards they were slow, to outsiders looking in I probably appeared to have chosen Navy Seals to be her therapists and I was the Drill Sargent. Needless to say we got her up on her feet and she liked it up there. There was this whole new world that opened up to her. It was a strange and very confusing world that made her sensory processing disorders go completely out of whack...but she was intrigued by this new strange place. She was intrigued enough to want to stay there....so we got a walker. How wonderful that a family at Cincinnati Children's had donated it to our PT to use since their son had grown out of it. We were chosen to receive the walker....It was the perfect size. Brei hated it, because now she had some real work to do. That stuff on the ground was for amateurs, this stuff up on your feet is where the real fun begins. (Chastity if you are reading this, I am in no way taking away from what our Andrew goes through, I'm just writing this so people realize how hard it is in a walker). This walking business took strength and Brei just didn't have it yet. She would go about 1 step and fall to the ground screaming. Our PT was great, she would lift Brei right back up and make her take another step. I will admit, it was tough to watch at times. I mean, I think Brei was half in pain and half angry that she couldn't do it. So this was how our days went for awhile. Our son Davis would stand about 3 steps away from her holding something shiny and that would hopefully motivate her to get to him. After months, she made it the 3 steps, and eventually 4 steps and she got to the point where we took the walker with us because she was able to stay up walking for a short period of time. Then one day.....about 2 months before her 3rd birthday, we were at toddler class at MR/DD (Clinton County Board of Mental Retardation and Developmental Disabilities, now simply called Board of DD, I like that better) and Brei was walking around in the gym with her classmates, therapists, early intervention specialists etc. It's like she was just waiting for the right audience. The people that would completely appreciate what she was about to do and celebrate with her in a way she couldn't celebrate...with words......and cheering......wait for it.....here it is......SHE WALKED RIGHT OUT OF THAT WALKER! and never looked back! I couldn't even believe what had just happened....this was a huge accomplishment for my little girl and I didn't have a camera there to get the huge smile on her face. For those of you that know Brei, you know that smile I'm speaking about.

So, we celebrated this huge joy in Brei's life and set out on a whole new set of goals....bending over to pick up objects....worked on this for 2 years and finally at the age of 4 1/2 she bent over and picked something up without falling. (This one is actually still a work in progress because she still falls sometimes). Rolling a ball, climing a ladder, throwing, catching etc. Those are all big ones that are a work in progress, jumping we've written off all together right now. It just doesn't look like it will be one of those things that we get to anytime soon. But hey, not being able to jump isn't the end of the world.

So this past couple of years Brei started really struggling with her walking to the point where she's been in a wheelchair a lot at school, especially the last 6 months. She was growing in height but her feet weren't growing at all. (Her feet stayed the same size for 2 years but her body grew up about 3 inches). So, she was off balance and started this new walk to compensate. It was bad....bad bad bad. She was hyperextending her knees backwards and footslapping (very common with autism and polymicrogyria) which was causing her hip to buckle (horrible explanation but it's all I've got). this new way of walking was exhausting her because she was using all the wrong muscles that aren't normally used for walking and she was just wearing her little body out. So, we got new orthotics recently to help with all that and wow, she's like a new kid. She actually is even running a little bit now. Did I just say running? I did! It's clumsy and adorable how hard she tries. She giggles the entire time like a kid who just got a new toy. She knows how powerful it is to be able to run and she's going for it. And by the way, she did get a new toy, her orthotics. :)

So it's all about prioritizing...and right now...the priority is with LIFE skills. If I die tomorrow can she get dressed or bathe herself. No, she cannot. So that's where we are putting our energies. Taking off shoes is a biggy, still a goal, sometimes she remembers the steps, sometimes she doesn't, I'm still dressing her to this day with assistance. She can take off her shirt most days, some days she just forgets all together what to do and needs a lot of verbal cues. Pants are difficult, she's still in diapers and may be forever...geesh, I could write a book just on that...anyway, her fingers get confused on where the pants end and the diaper begins. It's actually hilarious to watch how hard she's concentrating. In fact, she concentrates so hard that she starts to suck on her tongue and make the overly annoying slurping sound that I've grown accustomed to. My husband doesn't quite have the patience for the sound. But we love when she's slurping her tongue because it means she's really really really trying really hard. So, we help with her pants sometimes, especially when I dress her really cute and the pants have buttons and zippers. I really should dress her in elastic waistbands everyday but come on...She's beautiful and her clothes should match her personality. And usually she's the one picking out what she wears....well, I mean, I give her options.

The other priority right now is communication. I've saved the best for last. In fact it's so important I'm going to give that topic it's own blog on another day. Until then.....

Supplements

When we started seeing the Autism Specialist it was overwhelming to say the least. After our first visit (that lasted over 5 hours) my husband and I were so drained we came home and crashed. We had gone over Brei's entire medical file page by page trying to determine what testing needed to be done. It's hard to really think about more testing when to this point you've felt like your child was a pin cushion with all the testing.....and that testing never resulted in any real definitive answers. We were hopeful that this would be different. But we weren't like "overly" hopeful because we didn't want to get let down. We had learned from past experiences that it was emotionally draining to get too excited about anything relating to Brei's health. So, we did the testing...little by little. It's all out of pocket expenses....ALL OF IT. So, we had 9 tests at between $150.00 to $350.00 each, plus the cost of any blood tests that needed done at the hospital. We were so lucky that insurance covered some of the blood testing. I remember I was so overwhelmed at the cost but couldn't think about it because I just felt in my heart that God had led us to this doctor and that he would provide the money needed.

So, little by little we got the testing done and went for a follow up with Dr. Demio. Brei's little body was overloaded with heavy metals and toxins. So we started learning about detoxification and chelation to pull this stuff from her body. We also learned that her body doesn't absorb nutrients like the majority of the population. She holds on to the bad stuff and all the good stuff just seem to get flushed out. Her gut was a nightmare of bacterial and yeast overgrowth which was blocking neurological function. She also carries strep in her intestines and yeast loves strep...it holds onto it. FUN! I decided I'd better start researching yeast and all the behaviors that go along with it. Wow, I mean I think you could go to college to be a yeast specalist or something. That would help a lot of families...no time for that though, because after the first appointment I came home with a list of 22 supplements/prescriptions that we would be starting Brei on to get her better. To cure her and recover her. WOW! Did someone say cure and recover? I thought I maybe didn't hear the doc right......but then he said something amazing to me....He said, "We are going to get OUR girl better." He acted as though Brei was his. Well, that's important....because if he cares for his patients as though they are his then he is going to go the extra mile for them.

So - we come home....list in hand, notebook full of reading material and a phone appointment to talk with the supplement guru to learn when to give this stuff. Here's a sample schedule of a day in the life of Brei in terms of nutrition.....

7:00 a.m.

Kirkman's Folinic Acid

Custom Probiotics

Lee Silsby Amino Acid Powder Blend

7:30 a.m. - tube feeding

(with tube feeding in separate bolus)

Enansa Curcumin Powder

Kirkman's Cod Liver Oil

Complementary Prescriptions Biotin

Allergy Research Group Molybdenum

Allergy REsearch Group Selenium

Kirkman's Calcium

Nystatin Dose #1

Digestive Enzymes

Glutathione Cream (rubbed on shins)

9:00 a.m. - water bolus

10:30 a.m. - tube feeding

12:00 p.m. - water bolus

1:30 p.m. - tube feeding

(in separate bolus)

nystatin dose #2

Calcium #2

Digestive Enzymes

3:00 p.m. - water bolus

5:00 p.m. - tube feeding

8:00 p.m. - tube feeding

Amino Acid

Enhansa Curcumin

Biotin

Molybdenum

Selenium

Calcium

Nystatin

Enzymes

Custom Probiotics

Glutathione

B-12 injection

ARE YOU KIDDING ME????????????????????????????????????????????????????? Um......how much is this going to cost? And when am I gong to learn how to do all of this and remember what to do when? So I came home and sat on the idea for about a week. I'm not kidding. It was so overwhelming I just had to sit on it for awhile. I had 4 pages of when to start and what dosage...I mean I couldn't start all at one anyway, it had to be little by little not to shock her system. I created an excel checklist for every day for a block of 2 months. I took detailed notes of every reaction, behaviors that got worse, better, how often she puked up her feedings etc. We consulted with doc and he would tweak dosages here and there when my notes indicated that things were not adjusting well. Once we got her on the dosage/schedule that worked best for her based on my AMAZINGLY DETAILED note taking we set the schedule and watched for 6 months to see how she responded and then did ANOTHER ROUND OF THOSE REALLY EXPENSIVE TESTS. YIKES! Am I gonna have to sell my home to pay for this? I didn't care at this point....there weren't any tears left in my body to concern myself with my financial future....I mean, I'm a selfless person, but putting aside any though of a savings account or retirment for the good of my daughter's health made me worry a bit. And I didn't have time to find a scripture at the time to help me with my worry. I knew I wasn't supposed to worry, I knew that verse was somewhere in Matthew and I knew that God would carry me through. I knew he'd forgive me for not grabbing my Bible up right away to read. I was buried in books about nutrition and holistic health. And I still worried, even though I knew I wasn't supposed to....I did. I'm human and we humans tend to just throw God's word right out the window when the going gets tough. It's so easy to tell everyone else how to respond when they are in crisis you know? But when we are in crisis isn't it a whole other thing? We wanna waller around in our crisis and feel sorry for ourselves for awhile. Of course that just prolongs everything (I'm doing better with that now by the way).

So - after our 2nd round of testing we see that Brei's body isn't detoxifying like it should be. We up the curcumin dose, change some of her food around, add more B-12 injections, change her yeast prescription, and add EDTA cream which should aid in the chelation process. Note: This was a very mild chelation as he didn't think that Brei could handle a full blown chelation at the time. So I knew things would go slow, but I just wanted a urine test to come back with some mercury in it. Her blood tests showed so much Mercury it was scaring me that nothing came out in her urine. But, that had happened so long ago that the damage was done anyway.

We adjust the supplement schedule and start selling off our organs to pay for them (sarcastic tone) and then do the 3rd round of you guessed it..REALLY GROSSLY EXPENSIVE TESTING THAT INSURANCE DOESN'T PAY FOR. By now, I've completely adjusted to this unbelievable expense and I'm seeing so much improvement in my daughter that I'll live in the trunk of a car if it means my daughter has a better life. God was still providing...every month, the supplements were paid for...every month...can you believe it? Just like that, after paying all of our bills...we still would somehow miraculously have the over $900.00 needed to buy her supplements/prescriptions. Now really, I don't know that many people who spend an extra $900.00 on anything at the end of every month after they've paid all their bills...I was becoming completely ok with this....

So - at our next visit......HEAVY METALS ARE IN HER URINE! What? Are you kidding? It's working? It's WORKING!!!!!!!!!!!!! I knew it was working before he even told us because she had started saying a few words and making more social connections with people. She was improving all the time.

So during this entire time with the supplement drama...we had changed Brei to the Gluten Free/Casein Free diet. That was probably the hardest thing I've had to do. Thank goodness for Holly, Tonya and Whole Foods. We all kind of went on this journey together. We re-learned how to grocery shop and read labels and cook for that matter.

I knew intantly that Brei had a gluten intolerance because when we took her off of the gluten she went nuts....I mean....hello Betty Ford Clinic. This was going to be a full on detox. She really was addicted to the gluten high and she wasn't going to give it up easily. She would find gluten everywhere to get her fix. She would lick grocery carts at Kroger, doorknobs, windows (hello Windex has gluten), and floors. Did I mention...toilets. Yes, I said that out loud. Gross I know...but hey, my kid, well, she, uh. has autism...and polymicrogyria...and well....she's different, I'll say that. She's different...but she's mine and I'm gonna get her better if I have to go to the poor house doing it. So, the detox off of Gluten took 4 months. The longest months of my life. It was downright scary watching her break her gluten addiction.

So - now we are 2 years into this whole autism world. It's not so scary now...I mean that seriously, it's just NOT scary to me anymore. I mean there are scary moments but I feel like we've gotten Brei to the other side "health" wise and now we can tackle the sensory/social stuff, the developmental stuff. We can start making strides like...say....getting dressed....I mean, with help she can take off her shirt and pants...with a lot of help. But now that we have the health and nutrition down to an artform, I have time to work with her on just day to day stuff like holding a tooth brush, taking off socks, walking up and down stairs, holding a brush, learning how to bathe. Just day to day things that so many folks take for granted. My kid can't do those things. She tries her hardest but the motor planning/neurological piece is so delayed that her body just doesn't do what she wants it to do. Man it's frustrating I won't lie. I want to just say "hey Brei, run into your room and change clothes and get ready for school." But she can't, without help. And some morning I just want to be lazy...but I can't. I want to have a normal 6 1/2 year old who can do those things for herself. But I don't....so I have to teach her. I have to work with her over and over and over until she makes the connection...and she will someday, no doubt in my mind. Hopefully by the time she's 12 or I might just shoot myself (totally sarcastic here). I wuld never do that....she needs me here, with her, teaching her so that someday she can function in this crazy world....that brings me to a whole other thought....acceptance....for another day.

My kids are lounging on me so I think it's time to be finished.

The photo was taken at Bonnybrook Farms in Clarksville and she's pictured with her two good buddies Will and James. They are in her class at school and also are in her Little Hearts Big Smiles family.

GF/CF Blenderized Recipe

1 month supply: We freeze in 3 cup increments.

2 Whole Organic Chickens - cooked and de-boned

2 boxes Quinoa - cooked

15 beets - cooked down (save the juice)

15 apples sliced

14 bananas

14 carrots

1 jar of Coconut Oil - We use Natures Way EfaGold Organic

4 - of the 1/2 gallons of coconut or almond milk

Spinach - 2 bunches

Kale - 2 bags or 2 large bunches

Collared Greens - 2 bags or 2 large bunches

14 - dates

15 sweet potatos

1 bag of Gluten Free Oats (sold at Whole Foods or Kroger)

7 - 13.5 ounces of canned coconut milk - different propertes than the refrigerated coconut milk or the coconut oil - good fats and extra calories

1 - large container of Pomegranate juice

4 - Acai Juice (smaller Bossa Nova bottles)

I usually cook down the chicken, sweet potatos and beets (save the juice) the day before. That way I'm not on my feet the entire day on blenderize day. My husband always helps me from start to finish and it takes us about 3 hours of blending, an hour of clean up, prep time was about 3 hours. We grocery shop separate for all of these items to make tax time a little easier.

We have a Montel Healthmaster http://www.myhealthmaster.com/ because we were going through blenders about every 2 months and because it has an extra large container. We make 14-18 batches with the above ingredients. I wish I could say that I have this down to how much goes in each but we've been doing it so long I just have a feel for how much of each ingredient we put in. I think it would have to do more with your child's needs. And you can take away ingredients and add to your hearts content. All items are whole and organic so you can't really go wrong. If you have a yeasty kid you may want to use green apples instead of red. Apples have high amounts of glutathione so I wouldn't remove the apples altogether. If you have a kid that needs more greens in their diet you can use less of the other ingredients and more greens.

For all nutritional information I default to The Encyclopedia of Healing Foods by Michael Murray, ND. It's a huge book but very informational. It breaks down artificial coloring, sweeteners, gives details on oils, good and bad ones. Etc. It's really a great reference to have around when you are talking about total wellness.

Good luck on this blenderized diet journey. Make it fun. Lots of times we have Davis (our 8 year old) help chop veggies as we jam out to some of our favorite tunes. We try to make it fun because it is a lot of work and we are talking about doing this well....possibly forever so....we need to keep it real and not get stressed about it.

Breianna's Journey to Health (part 4)

OK - so I'm thinking I need to speed this along or this is going to turn into a novel. Brei is 3 1/2 and we venture to Oklahoma during Christmas/New years. My wonderful aunt Beverly and I have this amazing chat while there about health, eating healthy, organic etc etc whole foods, etc etc, supplements etc. She has chron's disease and has battled intestinal health issues for much of her life. She has experience and a wealth of ideas for me. All of which I'm very open to by now. I have this little support group, I'm meeting people walking a similar path and I'm renewed in Christ and have let him have Brei's health. So I'm just his instrument now and It's so much better being his instrument and letting him control my life than me trying to control my own life and Brei's. I can't really keep up on my own and it's about time I finally faced it. So, I've given it all to God and my burden seems much lighter. I came back to Ohio refreshed and ready to go to battle. I prayed all the time. I prayed before, but not like now. I mean, I was praying like a warrior mother who used every ounce of energy in my prayers. I prayed that God heal her sickness and help her grow. I read 2 books that started my holistic treatment journey.....

1. Jordan Rubin's - The Maker's Diet

2. Sally Fallon's - Nourishing Traditions

So we started slow....we bought all organic food for Brei's diet - it was still baby food but it was organic and we added coconut oil and took out the formula - I had researched all of the ingredients on the back of her formula can and realized I couldn't pronounce half of it so we tried to use less of it. We were still needing night feeds so we used it only for night feeds. The boluses during the day consisted of high fat/calorie organic baby foods that we bought in bulk at Whole Foods. We blended them down, added butter and coconut oil and she started to grow. That was exciting because we hadn't seen much growth as far is that stinking growth chart was concerned. We continued on that path nutritionally until 2008.

Medically we were kind of at a stand still. We had all of these diagnosis that we were sorting out, we were in OT, PT and SPT weekly. Our SPT was working on oral motor along with the speech and language. All of a sudden we were out of Help Me Grow and right into IEP's and preschool. What??????????? Didn't I just get to where I was navigating the system pretty well, I knew all the lingo the docs were throwing at me and I was confident to challenge docs and nurses to get the testing I wanted, I was learning the lingo of the organic and holistic world, I could talk supplements, probiotics and intestinal health with the best of them...but IEP's...What? That was just more than I could take. But I'm not a quitter and I just don't sit back, I want in the game. So my hubby and I dove in head first researching IEP's and learning to write them. When I look back at her first IEP, it was bad, we weren't confident enough at the time to really advocate for her needs, we kind of let the school write it for us. Good news is, we are in a good school district who takes special needs/special education very seriously. So, though it wasn't written that great and her goals were so so....It was a start. And now we are in school.....Full force! This was so different than when Davis went to school. I mean, he can come home and tell me who his friends are, what he learned, if he was treated nice by the kids etc. She can't. Oh man! This was hard on me. I mean really hard. I became a regular face in the classroom. Not because I didn't trust the teachers/aides to do their job, but because in order for me to navigate her educational system I had to be there looking at everything, seeing what would work best for her, what needed changed etc. So I volunteered for a lot of things that year. Thank goodness for my amazing neighbor who traded babysitting time back and forth so we could both volunteer at school. Thank you Evelina, you are Godsend. I will never be able to give you half of what you have given me in a friend. You are a blessing. And your children, they love Brei unconditionally and she knows that. Your family is a gift to us.

So - earlier I mentioned autism....yes, I'm saying it again. When Brei got into her 2nd year of preschool at Clinton Massie I started seeing some Autism....I didn't want to but I had to face reality and if I wanted her to reach her fullest potential I had to say Autism out loud and deal with the consequences. By now, I have amazing warrior mommy friends in our support group where I could go and say it out loud and they would tell me it's gonna be ok. Thank you Jenifer, Jessie, Holly, Deb, Tonya and Niki. So, being the mom that I am, and Barry being the dad that he is...we knew we just couldn't throw the word autism around and not dive in and do our research and get going on interventions. Some people said....aren't you doing enough interventions? Well, yes, I mean we were...but when you have a child with that many deficits and now she's banging her head and licking floors and having social troubles....you have no choice but to go the distance and DO MORE! So, thanks to friends with kids with autism who were already going to an autism specialist in Columbus the road had kind of been paved. We would all go on this new journey together.

And what a journey...at the first appointment we came home with 9 kits for home medical testing and directions for how to send them overnight to Doctor's Data. These tests were looking for toxic metals, yeast, and whether or not she's absorbing any of the nutrition in her body. Oh man, this is what I had been waiting for, answers to how her body was really working. I wasn't prepared for some of the results. Mercury, high levels, I mean, off the page and lead and other heavy metals and toxins. We were in for a whole new world now. We had to get her yeast under control, completely detox her off of gluten and casein, chelate to get rid of the Mercury that was taking over her body and get her intestines back on track. Needless to say, we were on a whole new nutritional ride......................(see part 5 for recipe)

So after all of that....it's 2011 - we've been with Dr. Demio for 2 years, we have a kid that's growing and she's actually starting to say some words, she's eating a few things by mouth (99% of her nutrition is the g-tube) and we have a whole new lease on life. Brei is in 1st grade at Clinton Massie and she has a full time aide, she's in the multi-handicapped unit where she has some amazing friends. She's very popular at her school because she's friendly, adorable and has this smile that will make the grumpiest of folks in a better mood. She is the happiest person I've ever met. Nothing gets her down, I mean nothing. After all of the surgeries and tests and hard work to get where she is today she's not down about it. She's a tough cookie. She teaches me everyday how to be the best version of myself that I can. She inspires me to focus on what's good in people and the world. She's in OT, PT and SPT at Mason and Liberty TWP and also has services through the school. She's also serviced by autism intervention at Hopewell that comes to the school weekly to help with interventions with social, sensory, educational etc. We've learned to navigate the educational system and speak that lingo too. We followup with her specialists every 6 months and go through a new pair of glasses an average of once every 6 weeks :) Thank you for letting me share Brei's story with you. I appreciate all of the support and encouragement I've received.

Our support group is off the ground and will celebrate the 5th anniversary of Little Hearts Big Smiles in August. You can check us out at http://www.littleheartsbigsmiles.org/

Breianna's Journey to Health (part 3)

So, Brei has just celebraed her 2nd birthday and I'm a frazzled mom. I'm running a business from home and raising a 4 year old preschooler and a 2 year old angel who can't seem to get well, visiting Children's Hospital more than I care to think about and now I'm finally venturing out and going to Help Me Grow outings by myself. In the past I wouldn't really go anywhere unless my sweet Barry was by my side. I'm feeling a little more comfortable in my new role as nurse and doctor but I'm getting really sick of all of the stares. By this time I'm noticing that not only does my daughter not look 2, but she looks (to others not me) sickly, puny and she behaves...well autistic. Can I say that? Dare I say that out loud? We don't have any other diagnosis at this point except for failure to thrive, asthma and cataracts so could this be what autism look like? I quickly put that thought at the other end of my brain and promise myslf I'll never have to think about that AGAIN!

So Breianna's nutritional needs really aren't getting any better...we are visiting the feeding team very rarely but they did mention at one of our previous appointments, if she continues to not tolerate formula you may try blenderized foods. It was just one more thing and I pushed the thought aside. I pushed it aside until I couldn't look at her one more day without feeling the guilt that I hadn't tried that one last option to help her with her nutrition. She was now getting sick ever 4 weeks, it would last about 8 days, she'd lose all abilities and just lay on the couch and vomit. We'd end up in the hospital on IV and then come home. She'd perk up just in time to get sick again. I was beginning to think that we needed to revisit neuro and GI but I knew that GI in Cincinnati was not the place for Brei. Now I want to say that GI in Cincinnati Children's is amazing, top notch, one of the best in the country, but they just didn't talk to us about motility and we wanted a motility study. About this time we met the Batton's and Holly was a nurse, g-tube mom and had a daughter a year older than Brei that was the closest thing to Brei I'd ever seen. So we became friends...not instantly....she was tired and I was tired and why make a new friend when I live in a very shut in world where I can't get out much to nourish a friendship. So we'd se each other at Help Me Grow from time to time and then in July of 2006 we said....hm...I wonder if other parents could use some of our experiences...by now we had learned to navigate the system, insurance, BCMH, Medicaid, Home Health, nursing care, respite etc etc etc. Let's start a support group to see if other families will come. So - we did and for 3 months we were the only ones there...we decided to give it one more go and that month 2 more moms showed up so we decided that we'd meet monthly and just meet people where they are. In that time the mom's really pushed me to leave Cincinnati Children's GI and go to Columbus to Dr. Mousa and DiLorenzo and the motility clinic. If they couldn't help me then probably no one could. I prayed over it and my husband and I made the switch.

In 2006 we had our first appointment in the motility clinic. By this time I am doing blendrized food.....looking back it was a very blah job of it but I was learning and reading and doing the best I could. We were basically taking baby food and blending it up with her formula into a thick puree that would fit down the tube. She wasn't vomiting as much but she still wasn't gaining a considerable amount of weight. Dr. Mousa was impressed with the blenderized diet we were doing and said to keep it up and in the meantime we were going to do the full fledged motility study. In other words, we were making Columbus our new home for awhile. We were driving there often. One of the blessings of living in Wilmington, Ohio. We are 1 hour from Cincinnati Children's, 40 minutes from Dayton Children's and 1 hour 10 min from Columbus Children's (now Nationwide Children's Hospital). So, our first round of motility testing was a 3 day stay and lots of testing. Brei hung in there. The findings were scary...things like mitochondrial, biopsy, neurogenic dysmotility etc etc are coming out of the doctor's mouths. The thing is, scary findings are better than no findings. I was beginning to think I was crazy so I was overwhelmed but almost overjoyed to hear researchable words on the lips of Brei's doctors. We had nothing before and now we have real words to find out the meanings for. The biopsy came up negative for mito but we know now that a fresh biopsy is best and just haven't retested. The next set of studies did show neurogenic dysmotility and after her swallow study she was diagnosed with dysphagia.

I felt like we were finally getting somewhere. Except, there's not a pill or a surgery to fix this. And it gets worse....or better, I really didn't know at the time....Neurology called us in to discuss some new "old" findings. It seems something had been overlooked. It took a neurologist in Chicago to see what our docs had missed. It was hard to see but it was there.....too much brain, ripples in fact. Extra ripples that shouldn't be there all folded over on top of themselves doing extensive damage to her nervous system. BAM! I felt like someone had just shot me in the chest. Do I dare ask if there is a cure? Does this extra ripply brain situation have a name? Do I want to know...I'll just google it later, stay up all night crying and be no better off than I am now....or will I? So I asked....no, there is no cure, no surgery, no fix. No making my daughter's body work right? No making her talk? No making her be able to swallow or suck or chew? And the name of this monster is so hard to spell I'll have to practice....Polymicrogyria. Wow, can you repeat that and then spell it for me please doc? I'm going to need to get more schooling to be able to explain this one to people :).

To top it all off I'm pregnant....oh man....I don't think I can take it. Neuro is saying things like genetic and I wouldn't advise having more children and well it's too late for that. So I worry and fret for 9 months fearful, high rish, more ultrasounds than I care to have to pay for. And little sister comes into the world and then can't breathe and then I'm asleep and then my husband comes in wiping back tears followed by a doctor from Cincinnati Children's and I just scream......and I'm not buying what this doc has come to sell me because I have Brei at home who needs me and if my Baylie has to go to the hospital and stay there then who TAKES CARE OF BREI!!!!!!!!!!!!!!!!!!!!!!!!!!!! Well I needed to pull it together because I think Bethesda North has a floor for loonies and I didn't need to end up there. So I watched Baylie (on life support) in her little pod with a dozen docs from Cincinnati Children's whisk her away....and then the docs gave me a shot and I was out like a light. When I woke up my docs had released me and my friend was waiting to drive me to Children's, my new home. I was worried and I knew Brei was with my inlaws so we'd be ok. Just get me there so I can hold my new baby. I don't know if I've held her yet. I had, but I didn't remember. I didn't get to hold her again for 4 weeks. All I remember is the docs talking about a Congenital Diaphraghmatic Hernea. I would have plenty of time to research in our little pot in the NICU. They said we'd be there for aobut 4 months so to get comfortable. But, I have this special needs daughter at home that really needs me to be there for her. She has therapies and a neuro appointment next week and a case study she's a part of and not to mention I have this son who is 5 and will be starting kindergarden and he needs me. No one was listening. It ended up being a 6 week stay, a surgery and recovery and home. So she was our MIRACLE child. Everyone was talking about it. She was the buzz in the hospital, still is. She's the baby that shouldn't have done so well and did better than anyone could imagine. She's the pie in the sky for what CDH parents want. We had met families whose children weren't doing well an so the guilt set in. Why did Baylie do so well and these other children are not? Well, that wasn't God's plan for her. I believe he needed me to have more energy for Brei. To continue being her defender.

So we pressed on....Brei is now 3 with a baby sister at home and did I mention, just before she turned 3 she started walking. Yep you heard me right, she's walking. Just about the time the therapists were talking about a wheelchair, Brei had other plans. So, walking brought it's own set of challenges, more than when your typical child walks. This is different, this is a kid who doesn't understand things about the world and who has a high pain tolerance, I don't mean she's tough I mean it's dangerous. She loves extreme hot and extreme cold because I think that's when she finally feels. Nerve damage, gotta love it. So, now that she's upright she can touch say the stove....and she wants to touch it and burn herself because it wakes up her brain and she can feel it. That's just an example....but it happened more than one...OUCH!

Nutritionally we are climbing..I mean, we're in the upper teens at this point....she's tiny, people mistake her for a 1 year old but hey, she's here, my laundry piles are a little smaller and I don't reak of vomit 24/7. At least her vomit, I do have a newborn at home. :)

Stay tuned......