The American Farmacy

   I might make some folks mad with this one but we're the only ones to blame for relinquishing any sense of control.
   I embarked on a journey 7 years ago getting into natural health and pursuing a degree. It was sadly cut short when the school closed for lack of funding. Since then I've carried on my search, personally and have turned up a plethora of interesting results.
  I still have my own personal struggles in this area but any of you that know my heart, I enjoy sharing while I'm learning too. But this... I have to share and I have to jump head long into.
  It takes your body 10 years to completely rebuild itself, it was designed that way by God. Your brain; a year, bones 3 months, blood 4 months, skin 1 month, DNA 2 months, you liver 6 weeks, stomach 5 days and lungs 2-3 weeks. Not everything would be as new again but it would begin rebuilding healthy cells, once toxins are removed.
   What are these toxins? Additives in the food; smoking, drinking, drug usage, environmental toxins, poor diet, poor sleep and a lack of exercise. Depending on where you grew up some of these things may not be a problem for you. It's never too late to make a change now if you struggle with any of these.
  Haven't you wanted to feel good? Be full of energy? Take a deep breath of cleaner air? I know I sure do that's why it's time for yet another round of dropping off the dead weight. Thankfully, my husband is on board.
   I've had a sugar craze since I was a kid. I blame it mostly on poor habits when I was younger and the goodies weren't stored somewhere I couldn't get to them. So I ate as I pleased. When I was pregnant with my 2nd child I developed gestational diabetes, meaning it would go away after she was born. It did. But it also puts me in the risk for diabetes later in life, that sucks.
   As Americans we consume 150-170 pounds of sugar a year, sugar is in everything, hidden and tucked away under clever names. In the 1800's the average sugar consumption was around 18 pounds a year and in the 1900's it jumped to 60 pounds. As time has ticked on sugar consumption has risen and so has sickness and disease. This is no coincidence.
   Our meals are conveniently packaged for us or delivered through a drive through window- for our convenience, of course. All the while we're getting sicker and sicker eating our way to a less healthy and less convenient life style.
   We also eat way too much meat in this country. Don't get me wrong, I love my chicken and pig products and I used to love cow until my body completely rejected it. Sadly, we just weren't made to eat all this meat. But where will be get protein??? Google it! Leafy greens and legumes, even nuts have plenty of protein. It isn't absolutely vital to our survival to scarf down meat.
   We've been spoon fed so many lies about the food we consume and the drugs that we take it's baffling. Few have been willing to question it. But why? Why have we become a country that seeks control over everything except our own bodies? Because we're told we have to do this or that. Or take this or that because if you don't you'll die? That's insane!
   The way I'm beginning to see it, it's very black and white, very obvious. It leads me back to a story in the Bible where Daniel challenged the king to allow him and his men to eat their own diet. The other men remained on the king's apportioned diet, comprised of meat and other things. After several days Daniel and his men appeared to be healthier and stronger than the king's men.
   That says something to me. It's Biblical to eat more fruits and veggies. God made them. You can purchase them organic and non-GMO now. I'm not even going to rip into GMO at this point, this post would be miles long.
   I'm going to challenge myself from here on out to do something better for myself. I don't expect you to dear reader but please do at least consider. Do some research yourself, you'd be foolish not to. There are several good documentaries out there to watch too, I'll list them at the bottom. My challenge, to incorporate as many fruits and veggies into my diet as humanly possible. And eventually, I'd like to be all fruits, veggies and grain. It's going to take some skillfulness in the kitchen as my sweet tooth doesn't think it sounds appetizing but I sure want to wake up feeling recharged and ready for the day. After 3 kids and getting sleep when we can (It's slowly getting better) I wake up in the morning foggy eyed and in dire need of caffeine to function. As much as I enjoy my caffeine, I know there will be a day when I will no longer need it because my body will be functioning as it should.
   If anyone is honestly inspired by this post leave a comment and I'll post updates on my blogspot. But for now (deep breath) wish me luck!



Documentaries:
Fork over knife
Food Inc.
Vegucated
Food matters
Supersize me
Hungry for change

The truth

                                                                        The truth

            Allow me to preface this blog entry, this is in no way a log of complaints nor a plea for sympathy. Today, it is merely an insight into what life is like with Lily, as accurate of an insight as possible without actually inviting perfect strangers into our home.

            Today, Lily is celebrating 11 months of life! That is quite the achievement considering we weren’t sure she was ever going to make it out of the hospital 11 months ago. Today Lily is not quite sitting on her own and she eats small amounts of yogurt and applesauce being spoon fed. Today Lily has two teeth, one on the top and one on the bottom. She has at least two more that are about to poke through. Amazingly, keeping in stride with the way she has been, she is taking it rather well. A bit more cranky than usual but no more than we have already dealt with.

Over the course of the last 11 months, beginning at about three weeks of life Lily had in home weekly nurse visits for several months. She has seen her regular doctor at least 10 times. Lily has seen “specialty” doctors about 15 times, ranging from; genetics, cardiology, ENT, a swallow specialist, GI, orthopedics and oxygen specialists. She has had by my estimation, 16 occupational therapy appointments, 10 physical therapy appointments, a handful of visits with the birth-3 program coordinators and staff. Lily has also seen chiropractors a handful of times as well.

Also over the course of the last 11 months, we have tried 13 different formulas, including goats milk. Lily suffers from extreme acid reflux which landed her in the hospital in September of 2014. She choked so hard that it broke most of the blood vessels in her adorable little face. My husband and I have tried various “cures” for the acid reflux, including, Omeprazole and ranitidine. Neither of which worked. We have tried coconut oil, chamomile tea, ginger root, aloe vera and gripe water. Finally we got sick and tired of Lily being treated like a case rather than a person and went alternative/natropathic. As it turns out, Lily’s reflux is a direct result of not producing enough stomach acid and needing to be on a pancreatic enzyme. It is due to her blood type. Honestly, looking back, we should have just gone this route in the first place… But given the special case that Lily is, I think we allowed her special needs and many unknown factors to determine our decision more than we should have. Since Lily has been on the enzyme, her reflux has been greatly reduced. Not gone but not as uncomfortable and I believe much more tolerable for her.

 A few days after birth Lily was put on oxygen, she finally decided it was time to retire the tubes in August of 2014. She had ear tube surgery earlier in the month of August as well. Lily was on oxygen for almost the first 6 months of her life. Everywhere she went she had tubes with her. At night she was hooked up to a pulse ox meter. She regularly had a rash on her foot from where the tape had been. The first two months of her life she was hooked up to the pulse ox 24 hours a day. The rash was much worse then, even with changing the location on her foot multiple times a day. She also had tape on her face, either on her nose to hold the tube in place or on her temples. We had to change up where we taped her on her face also because of skin irritation. Lily didn’t seem bothered by her tubes until the last month and a half or so. Her oxygen saturation levels were beginning to stay pretty consistent during the day when off oxygen. She was beginning to test her new limits as to what her little body could do. We eventually were able to keep her off the oxygen all day long with no problems what so ever. At night she would go back on and her saturation level would stay in the normal range. After about a month of only oxygen at night, Lily began pulling the oxygen out while sleeping. The alarms would never go off on her meter because she stayed within the normal range. It was as though she was telling us that it was time to come off.

We continued to keep the pulse ox on her at night with no oxygen just to be assured that this was really going to work. It sure has. It has been 5 months without oxygen and Lily has been doing great without it. A HUGE praise to God, the oxygen thing, while in the midst of it, seemed to be something that we were never going to make it out of. I can’t even begin to describe the odd looks we got from people when we would actually go places. Woman would approach the infant seat, not seeing the tank or the tubes with delight, then once seeing our little bundle their face would turn sour and ask what was wrong. We both became so well rehearsed in our response, we had been asked too many times to count. “Well, when she was born her lungs were under-developed, so she needs a little extra oxygen until her body catches up.” The response came automatically. It was usually followed by a nod, pushing out a smile and the person quietly walking away. At first it hurt my feelings and made me not want to go anywhere with her. I didn’t want anyone to just sit there and stare or ask questions. I didn’t want to have to explain away the huge truth of our life. God healed Lily in His perfect timing. It may have taken longer than we had hoped but no less, He healed her.

As time has ticked along there have been some strong character traits that have come forth in Lily’s little personality. We weren’t certain if they were a trisomy thing (see blog about trisomy 9) or if it was something else. So, one night I googled: why is my baby so crabby all the time. I found an article by a Dr. Sears. If you’re curious, google it for yourself. 12 features of a high needs baby. I read through the article, then skimmed through it again because I was in utter disbelief. This was our little baby. This was Lily to a T. While the article didn’t necessarily give solutions to caring for a high needs baby, it lead me to other blogs and resources and it also filled my husband and I will some relief that there was an explanation to what it was we were dealing with. I personally can’t offer any solutions either. In this 5-step to a solution sort of world that we live in, there is no easy fix of solution to coping with a high needs baby. And as difficult and as painful as this has been, in combination with all of Lily’s other special needs, we still have hope. We have faith that every day that we have Lily, God will provide just as He has for the last 11 months. God has provided resources. God has provided money. God has provided relief. Moreover, God has provided hope. There are days when we feel like we have no hope. I won’t lie. There are days where we are utterly exhausted and worn down to the nub because her reflux has been so bad and she is refusing to sleep again and wants to eat around the clock. Yes, this does happen.

It’s the middle of the night again. She’s been screaming with no hope of consolation (we’ve tried everything at this point) It’s 3 am and I’ve managed to get 15 minutes of sleep. This may be all I get until she finally decides to throw in the towel at 10 am. Yes there have been nights like this. This is the truth. These are the things most people don’t know anything about. Her reflux is out of control. She hasn’t pooped in 3 days. She getting a tooth. She was around someone who had a cold. We can’t lay her down. She doesn’t want to drink her bottle. She doesn’t want to be held. The Dave Matthews dvd isn’t even coming to the rescue this time. Nothing is working. She’s in tears. I’m in tears. What is left for me to do? So I utter a prayer. Many prayers actually. “Lord, please help me, I can’t do this anymore tonight. This child has to go to sleep. I have to go to sleep. There are so many things I need strength for tomorrow. Another unpredictable day is ahead. That is the only thing I am certain of, tomorrow is completely unpredictable. Please Lord, help us.” Lily’s cries turn to whimpers on her belly, on her tummy time blanket. The tears that have run down my face begin to dry and my shoulders drop a few more inches, the storm has passed. I pick her up as gently as possible and tuck her into bed.

This is our life. This is what every night used to look like. Sometimes the rocking and bouncing and music and crying and drinking milk would go on for hours. As I said before, seemingly with no end in sight. What else is a parent supposed to do? Pray. God hears me. He hears us. He hears Lily’s cries and knows her ailments better than we can and do. So we pray.

It’s been no coincidence that we have been led to various places and to various people for help and guidance. The times we followed the status quo, it seemed to return to result of more questions.  It was once we began to think outside of the box and follow our “gut” or God’s leading as I would prefer to call it, I think we have had more answers. My understanding thus far as to why God has given us such a special gift is because we refuse to just label her as something. Rather than treating her like someone. Someone very dear and special to us. We have set forth to go the extra mile for Lily. To continue to search. To keep looking for answers and solutions. And I’m hoping that in the meantime I can share it with whomever decides to read these blog entries.

I labeled this the truth because on the outside, if you see us out and about we may appear to be a normal family of 4. (whatever normal is anyway, haha…) Lily’s older sister tagging along side of the stroller. My husband or myself pushing the stroller and the other one of us not far from it. But there is so much that goes on within these walls, as there is in any other household, I would presume. But our life I can speak of, it’s the only life I know now.

There is little time for my husband and I together alone. There is little time or energy for leisure activities. Our days are filled with a lot of Lily face time, no I’m not talking about the app for your I phone, although it is similar. Lily isn’t interested in toys or books and any other “normal” baby things. She prefers to watch what you do. And she just wants us, all to herself, all the time. She studies. She watches and she sighs at times, furrows her brow and when she is bored with that, she will surely let you know. She will get a burst of energy out of nowhere and laugh a hearty laugh or make a howling sound. I often refer to her as the quiet spider because she often is content just watching the world around her. She is also commonly known around here as the cutest waker-upper ever. She really is. She will lay in bed making nearly inaudible sounds, just looking at her little bears that are printed on her bumper. I am grateful to say that most of our days get off to a good start, with smiles and quiet studying and laughter but that unfortunately changes quickly.

 My husband and I have coined a few new terms and phrases that only we would truly understand. Such as when describing our day- it was brain-melting. Or one-baby-circus. We can text these things to each other or say them in passing and know exactly what we’re talking about. If anything these new set of circumstances have helped us up our game in the communication department.  

 With the winter spewing it’s wrath all over Wisconsin, we certainly don’t go out much. We don’t have a regular baby sitter. We don’t have regular visitors. In fact we talk to less people now (not really by our choosing) than we did before we had Lily. The reason for that I think, is because I don’t think people know what to say. Because they know that with the events that have unfolded over the course of the last 11 months, we got rocked. There is no other way to describe that happened to our family. We did, we got rocked. We never saw this coming, nor would we have asked for it. Having said that though, having Lily in our life, we wouldn’t change a thing. If we did, we wouldn’t have her. And we wouldn’t give her back for anything.

She is beautiful. She is captivating. She is the strongest little person I know. She is a miracle in every sense of the word. There aren’t enough descriptive words in the English language to describe how truly amazing she really is.

Today Lily is 11 months old. God willing we are looking forward to more of this story unfolding. We haven’t made it this far without God’s help, I can’t say that enough. Thank you Lord for every day you have given us with Lily. Thank you for entrusting her to us.

**disclaimer**

These are my opinions. My account of our life and our experiences. Everything I have written here is not meant to be advice or a directive of any sort. Regard the information here as you wish. I am merely sharing our life experiences in the hope that there is someone else out there who needed to read this, just at the right moment, to know that they’re not alone. Much like we felt like we were alone at points too, until we found someone else who was going through what we are going through. I wish you Godspeed in your personal endeavors to finding a solution that WORKS for you, whatever it may be. Everyone is different and different things work for different people. God bless.