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......

Breianna's Journey to Health (part 2)

We got the g-tube placed in June of 05 and still were naive enough to think that she would get better. In May we had so much testing done I recall that she went under anasthesia 6 times that month. I was leary of her going under yet again to have the g-tube surgery. It simply had to be done. So, we had the surgery and stayed on the GI floor for 3 days post surgery to be trained how to use the g-tube, how to change it out, etc etc. We went home with a plan to do 24 hour feeds indefinitely to see if she would finally grow. The 24 hour feeds seemed to work for a few days...no vomit. hallejujah is all I can say....but that was very shortlived. By day 3 she was back to vomiting and retching and dehydration. (At least this was better than when she had the NG, she used to vomit the tubing back out and that was cumbersome to have to put back in). We played with the rates on the pump and would give Brei's tummy breaks but it just seemed like my whole life had become consumed with how to keep nutition in my little precious angel. I was stressed out to the max. I am a believer and know that Christ has a plan for everything but I really was questioning a lot of things and wasn't putting my faith in him like I should. So, I gained lots of weight from just eating to feed my stress of learning how to deal with life. WAtching your child struggle is soooo hard and not knowing how to help is unbearable as a mom. We continued to make life about getting food in our little girl, it was a struggle, there was lots of laundry...I mean, you can't imagine how much laundry. Thank goodness for my mother in law. She came weekly to help me catch up on laundry and to spend time with the kids to give me a break. We still weren't sleeping at all. Brei's little brain just didn't know how to turn off. Doctor's weren't sure how to help so I started researching on my own and found melatonin....AWWWW Melatonin. It worked for us! I mean, for a lot of people I know that it doesn't but for us......by the grace of my Lord and Savior, it worked! And we slept a little more than we had...and she was able to sleep a bit. Nighttime was very scary in our house because Breianna aspirates. So, she's laying down and being fed all night long. That's not a good combination, so someone ALWAYS had to be with her when she was sleeping and being fed. Which was um...everyday for 5 years. Let me tell ya,,,thats great for a marriage....I'm being very sarcastic. Thank God in heaven I'm married to a very amazing man who took his turns with staying up all night even though he'd go into work at 6:00 a.m. He knew how to feed her and do all of her like 14 medicines at the time. He knew all the doses etc. That says a lot.


OK - I'm going to skip ahead to December of 2005. We were in Oklahoma for Christmas and I was so tired I really don't remember much of it except that I got to sleep. When we got back to Ohio after a 15 hour drive I was changing Brei's diaper and I noticed something very cloudy in her eyes. We called the pediatrician and he told us to take a picture, if there's no "red eye" in the picture than she has cataracts. What...on top of everything else she has what???? The next morning we head to Dr. Bloom's at Children's Hospital in Dayton. Sure enough..Brei has cataracts and will need surgery immediately. Surgery was scheduled for the first week of January. Easy enough.......Well Brei got sick. I mean, really sick. She got the flu, was hospitalized for a week for malnutrition because of the flu and then we were home for a day and returned with pnemonia. We were there a few days and got to come home...rescheduled surgery and then she got RSV. We didn't get to have the first cataract surgery until mid Feb. and that was under the close supervision of our new pulmonologist Dr. Fink in Dayton Children's Hospital. The 2nd cataract surgery was in March because all of this sickness had caused some severe pulmonary problems and Brei was now on steroids to strengthen her lungs. This will go on for the next 3 years. And a diagnosis of asthma.


Brei is now two years old and weighs a whopping 17 pounds, she can crawl, hold her head up, sit up, do some weight bearing, is learning to stack blocks, isn't making a single sound out of her mouth, and no food by mouth.

Will write more later.....dinnertime!

Breianna's Journey to Health - (the beginning)

(I apologize in advance for any typos, grammatical errors etc....this is raw emotion and I'm typing as fast as my hands can go to keep up with the memories flooding my brain).

My beautiful blessing #2 was born on May 10, 2004. I had no idea at time what changes were in store for our family. She came into this world very quickly, my water broke, we headed to the hospital and within a few hours she was here! Nothing concerning yet.....then we get home. She doesn't sleep......EVER. I mean, I wasn't being one of those overtired moms who exaggerate everything...she literally never slept. I remember thinking, is this colic...? I read all about it...no, not really but there was really no other explanation...so we called it colic and moved on....except how do you move on when you are completely sleep deprived and are beginning to realize that something is terribly wrong here. Like within 2 days of being home you realize that your child isn't really eating....I mean she would nurse, but it would be little at a time and she never really seemed to be swallowing anything. I think I was too sleep deprived to realize the enormity of this problem. My child is not eating and I have to help her. Doctor's thought I was nuts to say the least. So we started this journey with our pediatrician called....come in every morning for a weigh in....WHAT? You want me to WHAT? Come to your office with my newborn and 2 year old to get her weighed...pay an office visit plus a copay for you to tell me she's not growing. This is insane. But I did it...because at the time I had no idea what else to do...and quite franky, I was too tired to argue. My husband was a football coach at a small college at the time, my parents lived 15 hours away so it was well....ME most of the time and my inlaws helped when they could but I couldn't expect them to move in with us...could I? And remember, I still really didn't know how much life was about to changed......

When Breianna was one month old she weighed about 6 lbs. No so good considering she was 8lb 8 oz. at birth. Things weren't looking good, doctor's were beginning to think I simply wasn't feeding my daughter and I was so emotional I couldn't even think straight. My daughter was wasting away to nothing and I didn't know how to help her. By the time she was 3 months old I realized not only had she not gained any weight at all, she couldn't do anything. She hadn't met a single milestone and it didn't look hopeful to me that she ever would. Was my daughter going to die? I remember exactly where I was when I was thinking this. I was sitting at our back deck trying to get her to take a bottle and she screamed like I was torturing her. I know now that she had an aversion to anything going into her mouth because it's painful and scary for her. At the time I didn't know what the problem was. I just remember thinking...if she doesn't take this food she is going to die. Her output was a diaper a day and I knew from already having a child that this just isn't good. So we continued to go for weigh in's with our local pediatician at at 6 months I had kind of had enough. I'm embarrassed to admit that it took me that long to "get in gear" but I was tired and didn't know what to do to help her.

The changing point for me was when I was visiting my friend Keri and we were talking about how scary this was that Brei wasn't reaching milestones and that she still looked just like a newborn. I left Keri's and went straight to my pediatricians office....I stormed in on a mission....I did not know how big this mission was going to be at the time but I was renewed to save my child. So, I had the nurses and doctor's watch me nurse and try to feed her. I told them that something was very wrong with her eating...things aren't clicking for her to know what to do. I said I am not leaving here until someone gets me some help. I left with an appointmet to the Feeding Clinic at Cincinnati Children's Hospital. So, a week later we are sitting in the feeding clinic and feeling all hopeful that these people are going to "fix" my child. They bring in specialists from GI, Neuro, and Genetics, ask a ton of questions and then bring in an OT and SPT to evaluate Brei. They send me home with all these exercises and an appointment to come back next week. There's also all this paperwork for a program called Help Me Grow. I get a call the next morning from Help Me Grow and an appointment is scheduled for them to make a home visit. I'm not sure what it's all about but at this point I'll just listen to what they have to say.

So we got into the Help Me Grow program and at the time they offered home based OT and PT, we visited the feeding clinic every week for awhile but they didn't seem to be helping. They were running so many tests on Brei that for awhile I felt like we lived at the hospital. We were literall going there everyday for awhile. We started doing OT, PT, SPT at Cincinnati Children's o top of the Help Me Grow program hoping that she could start catching up on her milestones....hahahahaha...I was naive. :)

By 8 months Brei was so malnourished that I demanded an NG tube be placed. We had talked a little about it but the feeding clininc wanted to exlore other options first. Well, I realized that they were exploring the....let's wach this mom because I don't think she's feeding her kid option.....then I heard the word munchhausen and knew this was not good. So I went on survival mode kind of....I told them I didn't want to continue these appointments, that I wanted to see the chief of Neurology and that I wasn't leaving until we had an NG tube. So this began our journey into Home Health companies and NG tubes. They obliged my demands for an NG...I'm not sure why except that God made it happen. We went home to wait on Home Health to deliver a feeding pump and a list of how to feed her and at what rate. Well how hard can it be? YOu teach me how to use then pump and I feed her through this tube....let's get going so she can grow. I thought all my problems were going to be over. I didn't realize they were just beginning.

So we learn how to use the pump, get the formula delivered and begin to feed her at the rates suggested by the docs. Within an hour we are covered in vomit, Brei is in and out of consciousness and she's becoming more dehydrated than she was before. So we wait awhile and try again. More vomit, retching, passing out, dehydration, hospital, IV fluids, more tests, come home with a plan to feed. This goes on and on for a few months. Sleepless nights, retching, vomiting. Vomit all the time. I don't mean like reflux vomit I mean vomit until she passes out, we head to the hospital for IV fluids kind of vomit. Friends couldn't handle this horror and I didn't have many....the ones that stuck it out...Thank you and I am indebted to you for life. So we begin to talk to GI about a g-tube. They've had results with placing a g-tube and then the child could tolerate feeds better. Still no doctor's had mentioned motility...a big word...but no one had said a thing and I didn't know about it yet......so...we agree to a g-tube. The surgery will be in June 2006 just 1 month after her first birthday. By this time, we find out she has vision problems, she's gotten glasses, she's not met any milestones and she weighs just shy of 12 pounds at her birthday party. Yippee...let's celebrate...celebrate what? The fact that genetics said she probably wouldn't live or that I as doing puke laundry in all of my spare time. Did anyone out there realize that I had a husband and son to think about too?