Thursday, June 14, 2012

Amy's Story

Amy Rose Woods, born on April 28th, 2006 --- five weeks early. 

Amy on her sixth birthday

My pregnancy with Amy was just like all the other ones... very difficult. This one was made worse by the fact that I now had two other babies to care for AND I was in my last semester of school--trying to earn my associates in Liberal Arts. I was rushing to finish this so I could have some type of degree should the police ever come after me for homeschooling my own kids...eventually. 

So I was in and out of the hospital many times, but I thought all was going well, until I went in--for the 30th time--to the hospital for fluids/check-up and I asked them for an ultrasound within a week or two. The doctor asked why and I said "she needs to be checked on."  He didn't seem convinced, but his nurse was really nice and said "Look, she's already had two, if she thinks there is a problem, we should look."  Thank God for that nurse, because she scheduled me for an ultrasound the next day. 

I went in for what I thought would be a routine U/S and instead it took well over an hour. I was alone since Tom was at home with Regina and Veronica (we really had no sitters in NY at this time)... anyway, I sensed something was off, but was too afraid to ask. I know now they did a stage 4 u/s, which means they were checking organ function, blood flow, and other signs of life/trouble. 

They told me to come in the very next day for an induction and that she would probably be fine. I asked why and the doctor said "Oh, you have no amniotic fluid. Best to just induce you right away."  I knew that wasn't all since I had the same issue with the first two pregnancies, and all they said was "drink water and bedrest".  But... whatever. I was tired of being sick, and sick of being pregnant, so whatever, let's have a baby! 

Amy was born the next day about six hours after labor begun. Turns out, she had a triple nuchal cord and the more she grew the more it was closing off her airway and blood flow. The doctor said it was so serious that if I had come in three days later, she would have been stillborn. . . that still gives me the chills.

She was in the NICU for five days due to breathing issues. I was told, after they released her, that I was very lucky she did so well.  Don't know what that means, but hey, I knew then that she was going to be my feisty-fighter kid. And she is! 

Amy weighed in at 5lbs 2oz and 18 inches long. She dropped to 4lbs 10oz in the hospital--not bad, really, but sounded so tiny!  She had developed a bad case of jaundice, but we fixed it eventually. Her mouth was so small she couldn't feed well, so we had to use tiny bottles. I was so sad that I couldn't get her to nurse. I tried everything I could, but gave up after three weeks when she wasn't gaining weight and her jaundice still lingered. She really was just too small and the energy it took to eat was too much for her.  I was really sad, but relieved that her angels had told me to get her out while we could--at least she was alive!

I finished finals while Amy was in the NICU. I still don't know how I did it. I graduated when she was three weeks old. And we moved from NY to AL when she was six weeks old, I think? So in all the hubbub we weren't forced by her doctor to give her all the vaccine shots. I did have her checked out in AL since I was still worried about her growth... I went into the doctor's office... they had me wait 2.5 hours!!...with all three girls (who at this point are just 3, 1.5, and newborn) and waited to see the doctor. To say I was tired in an understatement. I was almost catatonic. We finally walk into the exam room and the nurse comes in saying "she needs all the vaccines"  I was so frazzled at this point because Amy had been freaking out screaming for the last 20 minutes, and the other two were crying loudly for the last hour because it was way past lunch time.  I said "no, she was five weeks early, so really she's only about a week old, and I don't want her to have anything at this point."   The nurse didn't like that at all... so she talked to the doctor who also urged me to give Amy, a preemie, not one vaccine but SIX all at once.  I was so tired, and so frazzled, and so sad I just couldn't move, so all I could say was "No."  

They did it anyway. Yes, I asked them not to, twice, and they did it anyway... even the stupid one! I forget what it's called but I said "why does she need that" and they said "because she might get a cold and it would mean she needs to be hospitalized if she throws up or has diarrhea."  I said "I'll take my chances, she doesn't need it for a possible cold."  

They gave it to her anyway.

I felt so abused at this point:  Waiting in a waiting room for nearly three hours with three crying kids, all of us hungry, they made no attempt at an apology, and then I was bullied once I got back there. I am sure they sensed how rundown I was and knew I couldn't fight, so they just did what they wanted. It still makes me angry to even think about it. And it makes me sad, not only for Amy, but for me that I was that ill myself, and nobody--not even me--knew it. 

I forced myself to get the kids and get to the car. I cried the whole way home. I then decided I wouldn't ever go back to a doctor for routine care. There are definitely legitimate reasons to see a doctor, but being bullied isn't one of them. 

I tore up the appointment card and never went back.

Amy seemed to do well. She was on fully on formula at this point and seemed to thrive on it. I received a lot of wonderful comments about it... such as "you know she'll have weight problem when she's older...formula does that to them"  or "You know they use rat poison in that, right" or "her brain won't develop correctly if you don't breastfeed." and "she is always going to be sick, you shouldn't give that to her!"   All said by well-intentioned people, but all I knew is that I couldn't pump round the clock with two other kids running around and me being in a perpetual zombie-like state. 

Ironically, Amy has turned out to be my most thin, healthy, smart kids.... not that that's saying much for how sick the family is, but just goes to show that while breastfeeding is best, you will not ruin your baby if you have to go with formula.

About this time is when Veronica began to have all her issues, so I can't remember Amy having any real issues during this time.

Fast forward a few years... Amy was fully potty trained a few months after her 2nd birthday (if I remember correctly). She was trained for a good six, or more, months and all was well. Until one day she began having "accidents" all over the place, all day long. I thought it was a bladder infection, but everything was okay with that. I took her to the doctor (not the one who gave her shots, but the one who had been seeing Veronica) thinking it might be a kidney problem.  His answer?  Guess. Go ahead. Guess! 

"She's a little girl. That's what they do."   Yes, I say, but not to this degree. And Amy hates to be out of control of things, and she's very much a neat-nik, everything must be perfect, or she's not happy... this is very unlike her.  "Well" he says "you're pregnant. Again (this time with Elizabeth). And she's probably reverting back to her babyish ways."   I suppose, I said, but I don't think so.  He told me to go home and let her grow out of it. 

We tried everything... bribes, taking away toys, being super nice, sitting all day in the bathroom, getting angry, and crying. A lot.  This went on from ages three to four. I could not believe this really smart kid would just refuse to go to the bathroom and instead go on everything in sight. Tom and I were pulling our hair out with her.  I took her back to the doctor thinking it must be some sort of genetic defect. And I was really scared it had to be something from her days in utero where she had no fluid (which does have a lot to do with the formation of kidneys) or maybe the cord cut off too much blood flow to something in her brain... kinda seems silly now, but it was scary back then. 

So he says "oh, she's still little.  And she is probably constipated which can put pressure on her bladder and make her go. You should feed her a more balanced diet and lots of fiber."   Well, I took exception to this since my whole life at this point revolved around making sure my kids ate well. No, it was Primal, but I am fairly certain my kids were the only kids on the street who enjoyed eating salad and vegetables and ate things other than chicken nuggets and french fries. If that's what you feed your kids, I'm not judging that... I just wanted my kids to eat a lot of good for you food and so I really took that seriously. We would often talk about food at the table "who wants strawberries! What kind of nutrients are in strawberries... onions...broccoli...etc".  So I didn't like the idea that I must be a mom who is just stuffing cookies down Amy's throat and couldn't tell between constipation and a real problem.

I said "look, my kids probably eat better than 90% of your patients... she is not constipated. She has plenty of vegetables and whole grains and lots of water."  He didn't like that so he challenged me by saying "Okay, then we'll just have to get an x-ray to look at her colon."  I hate it when doctors try to prove points based on nothing...  "Okay. Go ahead."   

The xray came back a few days later. I had a phone call from the nurse saying "well, she's not constipated... but the dr wants you to go ahead and give her heavy doses of Miralax for a week."

Miralax is a white powder that you mix into liquid and it bulks up while in your intestines creating "fake fiber".  I said I was not going to give my 4 year old fake fiber just because, and since it is not constipation causing this bladder issue... what else could we do?   She said "He won't do anything until you try the miralax."   

What. Ever. 

We held off on giving her the miralax for a few months. I tried to up her vegetable intake and her water intake to see if that would help things. After another few months I told Tom she was getting worse and maybe we should try the miralax for a few days just so the doctor would take us seriously. Tom said ok, so we did.  Of course it did nothing to help Amy. I went back to the doctor (only because I needed him to order tests for me)  and he said "well, she's probably constipated, give her miralax."   Seriously? I mean, seriously?!   I said "you already checked her for constipation and the xray said she was clear."  He said that couldn't be true and he was going to check the xray again...only his computer wouldn't pull it up, so he was going to assume it was constipation anyway.   What the???

He said "well, I could refer you to a specialist but they'll be like "why are you wasting my time, she's four and this happens all the time."   I felt like punching him. Three visits to his office ... we've dealt with this for a year... and he has the nerve to tell me I'm wasting their time?  I said "I still want to do it."  And he said "they usually grow out of it by six months. Don't worry."  I wanted to scream :you do have *her* chart on the computer you have been staring at non-stop for the last five minutes, right?!  Instead I just said "it's been double that."  He said it must be because we had a new baby. I said "then why did it begin before the new baby was born?"  He said "it's not a big deal."  I said "yes, it is." 

I did take Amy to the chiropractor who had been helping us with Veronica. He worked on her a little, but it didn't seem to help. He did say that he's not specialized with little kids, so maybe a pedi chiro would work better. 

At this point Tom called in favors from one of his Harvard friends who went on to become a pediatrician. She didn't have much to say, if I recall correctly. I think she knew a couple of doctors in AL who might be able to help, but at this point I was burnt out on AL doctors (no offense, anyone!) so I said "we're moving in six months. Let's just wait until we get to Kansas."   So we did. 

Once we got to Kansas we had an ultrasound ordered for her... her kidneys showed that everything was well except that they couldn't find one of the tubes going from the kidney to the bladder. I said "oh good, is that the problem?!  The tech said "well, they kinda float around, so it could still be there."   They think it probably was hiding since there was no fluid backed up into the kidney and all else looked well.  Darn. I was hoping for an answer. 

We finally settled in with school and the new house and all that, so Dr. Rob (in AL) helped me find a chiropractor here in Kansas who might be good for the whole family. 

We found Dr. Stacy and she was really great from the start. I told her Amy's issues, said "Amy is now five and and still having these issues and I have nothing left to try."  She said "of course there is a problem. How could any doctor let this go on for so long?!"  I thought that was a great question. Dr Stacy has been working with Amy for about nine months now. Dr. Stacy said it was a nerve issue, that she had such a kink in her spine (and you could feel it) that it had to be blocking the nerve signal to her brain telling Amy "get to the bathroom" and so her bladder would just release whenever there was something in there.   Made sense. The ironic part is that Amy did become constipated at some point because she stopped drinking fluids "but Moooom, they always make me go to the bathroom!"

So it took about four months of Dr. S working on Amy to get her better. We still have no idea what would have happened to make the spine get all kinked up. And it's taken another two months for Amy's brain to relearn the "go to the bathroom" signal. We did have a few time periods where Amy (ever the strong willed child) used the "I'm not going to the bathroom just because you told me to" weapon.  Never worked. She would definitely get in trouble for that, but was often excused for the "I just got busy and forgot" accidents.  Still dealing with this issue for basically 3 1/2 years has really been draining (haha). 

Dr. Stacy has been amazing. She really worked very closely with us. She tried many different techniques, she gave us a lot of time and support, and after the first few visits, she treated Amy for FREE. She said if she could help our family, and especially help Amy to get back to normal, that would really make her day. What a 180 turn for us... going from such a dismissive, rude doctor to an all-out caring one. I was really touched. 

Even when Amy was going through her stubborn "you can't make me go to the bathroom" stage, Dr. Stacy went to the store and with her own money bought Amy "prizes" for every week she went to the bathroom five times (daily). I mean, really... she was off the clock and still took the time to work on Amy, even though she wasn't getting paid!   

Chiropractors rock. 

Okay, so what does this have to do with being Primal?  Well, not much, I suppose. At least, this part of the story isn't too primal, but she's always getting left out of stuff, so I thought it only fair to share her story as well.  Once we cleared up her bladder issue we had the time and energy to focus on her other health needs. 

She's, by far, my pickiest eater. She has to have foods cooked a certain way. She hates bone-in chicken because it's slimy and has "icky bones and stuff." She must be a texture person, because most of her complaints aren't about taste, but about how it feels or looks. Ugh. I don't know if it's a new power-play move or what, but I'm not playing. I serve her what I serve everyone else and she can choose to eat it or not.  She always loved pizza and mac 'n' cheese (whole grain) but she's been a job and a half since going Primal.  Thankfully she will willingly eat many vegetables and fruits and dairy, but she's difficult to please with meats. 

Amy is prone to anger outbursts. It can be pretty bad at times. Her sisters bear the many marks and a few scars from Amy's scratching and biting. I was really surprised when this behavior began since my other kids had never even really hit each other. Amy's anger was (and still can be) out of control. She is a perfectionist, and must be in charge, and has the final say, and is *never* wrong. I see a lot of myself in her, unfortunately. I don't bite though. 

Anyway, the whole house would kind of have an "aww man" moment when Amy would wake up for the day. We all knew it was going to be fighting and screaming and power struggles all day. It was really not a lot of fun to be around her. She was always angry. I tried the usual parental tricks of "this is your thing you are in charge of and nobody else can do it/touch it" or "as soon as you get angry, go to your room and sing a song" and "think of how much it hurts Jesus when you hurt your sisters" kinds of things. Nothing worked. 

About a month or two after Going Primal Tom and I both said one day "Hey... Amy is like a different kid!"  And she was/is. She is still prone to anger outbursts, and you can still find a claw mark on her sisters every once in a while (by the way, any advice on how to punish for that?) but overall, she has a lot of happy moments and fun-filled days.

I'm not sure what dietary thing she was eating (corn syrup, too much sugar, grain, food coloring, etc) that was magnifying these issues... but I'm glad it stopped! I really thought I was going to be dealing with a crazy-hulk-like kid for the next 12 years, and though I love her, I wasn't too thrilled about the idea of fighting all day, every day.

I've been allowing her to pick her own cheats since choosing stuff makes her feel in charge of herself, and because I want to see how her cheats affect her. Corn syrup is now on the "I don't care how much you beg, you can't have it" list. It turns her into a scary little thing within 20 minutes. No, thanks. 

Looking at all the changes my kids have made--just from diet!--it makes me wonder how many kids today are on medications, in therapy, or are labeled as "problem kids" needlessly?  And if the parents knew it could be controlled (at least to some degree) with monitoring food intake, would they choose to do it?  It does take a lot of time and energy to be a foodie.

Two morals to this story. 1) Always trust your parental gut. And 2) It's worth Going Primal, even if it's just two or three weeks, because you never know what kind of positive effect it will have on you and your children. I never would have thought to even seek a cure for Amy's anger, and it was a very great gift to have it reduced by just a few simple food choices.


  1. I love your stories on so many levels! Thanks for sharing! Chiropractic care truly makes a HUGE difference as well as what you feed your body! We teach our patients this every day. Dr. Rob is learning new things to share every day. He is changing lives every day just like he did for you. It's a good feeling to have such a caring doctor, one who is a friend as well! So glad your family is doing well!

  2. I love your stories on so many levels! Thanks for sharing! Chiropractic care truly makes a HUGE difference as well as what you feed your body! We teach our patients this every day. Dr. Rob is learning new things to share every day. He is changing lives every day just like he did for you. It's a good feeling to have such a caring doctor, one who is a friend as well! So glad your family is doing well!

  3. What a painful and frustrating journey. I'm amazed that you DON'T bite! I would! LOL

  4. You guys have been through so much...I'm glad you found such a kind and caring doctor like that and that Amy seems to be so much better now.

  5. Aww, I'm so sorry you had to go through all that. If you ever move back to Alabama, let me know and I'll give you our pediatrician's name. He's awesome! We've never had to sit in the waiting room more than 30 mins. (Usually less.) And he always takes time to really listen to you.
    As for the punishment for biting and clawing, I have my daughter apologize and give the person/pet that she hurt a hug or a pet and tell her she has to help them feel better because she hurt them. It doesn't stop her from clawing/biting, but after she calms down and thinks about what she did, she usually realizes it was wrong and will apologize and give a hug without prompting from us now. Hope this helps.

  6. Glad to see the diet have so much positive effect!