Gracie Facie

Hi everyone!

Once again, it’s been a long time between posts.  We’re really busy just like everyone else is, but I did have to make time to post a few “Summer Pics” and to update you on Grace’s latest labs. 

We saw Dr. Pan, Grace’s nephrologist last week.  Gracie’s blood and urine were both tested and the results are great!  Her liver enzymes, which were previously elevated when she was on the ace inhibitor, Enalapril, are down to an almost normal level.  Everything else bloodwork wise looked good.  Her creatinine, the chemical that the kidneys produce, is one way to measure kidney function.  Normal level is below a .5.  Hers has been between a .8 and 1.0 since we’ve been watching it.  This time it was a 1.0 again, which Dr. Pan feels is stable.  BUT………when the protein in her urine was tested, we had even better news.  A protein to creatinine ratio is also used to measure kidney function.  Basically, the lower the number, the better it is.  Grace’s ratio has been as high as 6.1 and as low as 3.9.  Last week, it was a 3.1!  Moving in the right direction. 

Now, this doesn’t mean that the damaged kidney tissue is necessarily healing itself, yet.  What it does mean is that the functioning tissue is becoming more efficient and picking up the slack for the non-functioning tissue.  This was Dr. Saxe’s first goal.  Also, Gracie’s kidney stability either says to me that we’ve either slowed the rate of deterioration, or stopped it altogether.  I like to think it’s the latter. 

We couldn’t be happier.  Grace is improving WITHOUT the use of pharmaceutical drugs.  We are doing quite a few other things, though.  Still on the anti-inflammatory diet, and Grace is still taking  the many things prescribed by Dr. Saxe.  We have been working on her structure with Dr. Gandy, who is also a chiropractor, after finding that Grace has some spinal sublaxations that don’t seem to be helping her neurological pathways.  Grace comes to yoga class with me every Monday, and I clear her urine every day, which by the way, many people have asked me to explain further.  (If you are one who is curious about this, look up the NAET technique developed by Nevi Nambudripod.  She wrote a book called ”Say Goodbye to Illness” on the subject).  I could go on and on. 

So there you have it.  The latest in Gracie health news.  She still continues to play cello and is taking summer lessons.  Quinn is walking, and Hollyn is as sweet as ever and seems in no hurry to walk.  Todd and I are still losing weight and seeing muscle tone we haven’t seen in years – very exciting.  I’m still learning so much about how the body works, too much to go into, but all this has prompted me to learn loads more.  I want to really understand how we work and be able to integrate my knowledge into my career, so I’ve enrolled in a private college to start a 20 month nursing program in the fall.  Yes, after only 20 months one can become a RN!  Amazing.  20 jam packed difficult months, but worth it at the end.  Todd and I made this decision jointly and know the benefits at the end of school will be invaluable.  I say it all the time – I couldn’t ask for a better husband for me and a better father for my kids.  Really. 

Anyway, I hope you enjoy the pictures in the “Summer Pics” entry. 

Love and health,

Angie

Q

Hi again everybody!  Here we are, already into spring.  Hopefully it’ll feel like it pretty soon.  So much has happened in the last month, I know there’s no way to share even most of it.  I’ll just do my best to give the important points. 

Grace had another blood test at the beginning of March and the results weren’t very encouraging, at first.  Her creatinine, which is the main way her nephrologist measures kidney function, stayed pretty much the same.  The protein in her urine, however shot way up.  Also, Grace’s liver has never had any problem, but now one of the two liver enzymes they tested was a bit elevated.  Dr. Pan, Grace’s nephrologist, isn’t concerned and feels she’s pretty stable. 

I have recently found out that Enalapril, the blood pressure medication Grace has been on since December, can raise liver enzymes, in rare cases, of course.  Interesting.   I had Dr. Gandy test for any reaction from Grace for the drug and it proved very inflammatory to her.  I wonder what else it’s capable of in addition to hurting her liver. 

The results from the people doing the FSGS study on the East Coast came back and Dr. Pan feels they were positive, in respect to the previous diagnosis.  The study individuals feel that Grace does have FSGS, but there’s not enough evidence to diagnose her with the extra rare “collapsing variant”.  Although the Western medicine diagnosis is less severe, Dr. Pan now wants to put Grace on Prednisone, and eventually Cyclophosphamide, along with the Enalapril she’s supposed to be on right now.  On these drugs, the odds are that she’ll have a 20% chance of not needing a kidney transplant eventually.  Todd and I feel that based on the horrific side effects of these drugs, the low success rate of them and Grace’s current state of stability, we are not putting her on them at this time.  Putting these things into Grace’s little six year old body has never sat well with me.  Look up the side effects of these medications and you’ll understand why. 

On a brighter note……….

We are having monthly visits with Dr. Kim Saxe, our naturopathic physician, and bi-weekly visits with Dr. Gandy, our kinesiologist.  Dr. Saxe has consulted with another naturopath she knows who is a specialist in urology.  Upon his suggestions via Dr. Saxe, we are now targeting very specifically Grace’s kidneys, and are continuing doing what we’ve been for her immune system.  In addition to almost everything I’ve mentioned before, she is taking vitamin E, reishi mushroom, certain amino acids, and a few other things.  Ironically, just before being prescribed these things, Dr. Gandy, (our Kinesiologist), tested Grace for problems with about 15 very specific things, and vitamin B, E, molds, amino acids, and a few others proved to be problematic for her.  I asked Dr. Gandy how this was possible, espically with vitamin B, since Grace has been taking it daily for the last 3 months.  Her response fascinated me. 

Dr. Gandy explained to me that it’s not usually an excess or lacking of the substance, like vitamin B for example, but the body’s inability to accept or to process it.  Then that creates a deficiency.  So, what she does then is to “clear” Grace’s body of the problem, enabling her to utilize everything that her body so desperately needs.  After she does the clearing, Grace’s body no longer reacts negatively to the B vitamin. 

I have seen this done quite a few times now and Dr. Gandy suggests that anyone can do it.  I mentioned all of this to another of my resources and friend, Holly, a relative on Todd’s side.  She’s a holistic vet practicing in Arizona, and she had another suggestion for me.  She told me that many animals she comes into contact with who have chronic GI issues tend to be reacting to their own saliva, urine or fecies.  She also  “clears” these problems with the animals, and gets tremendous results.  Holly suggested that Grace may be reacting to her own urine, and should probably be cleared from it every day, to keep reminding her body that it’s not supposed to be reacting badly to it.  (Clearing involves no direct contact, just a bit in a container-you can stop making that face now).  I plan to start doing this right away. 

When I mentioned to my sister, Myra, (an accupuncturist), that I’m amazed that we can be allergic to our own waste, she plainly stated that that’s basically what auto-immune disease is.  You’re allergic to your own body, therefore your body attacks itself.  This was like an epiphany for me.  It makes so much sense.  When I think in these ways, I feel so logical and clear headed.  Just more motivation to keep on down the path that feels most right. 

I just want to say thanks to everyone who acts as a sounding board for me.  I process so much of this information verbally, and I get so much of it from people in my life, along with all the reading I do.  Thank you!!

Love,

Angie

P.S.  Grace is playing another cello solo in the Spring Suzuki Concert on Thursday,       May 29th at 7pm.  She has also been learning to play the harmony to Twinkle Twinkle, and sounds great with the squeaky violins.  (ha ha ha)

Good morning!

So we’ve been busy this week with dr appts, cooking, and babies, of course.  I just made my first trip to Whole Foods this week and can’t wait to go back.  I am very impressed.  The selection they have was incredible and pricing was pretty good, great with some items. 

Many of our friends and family have been inspired to make some changes to their ways of eating, and have been asking where to start.  It’s so overwhelming at first.  Some of them are ready for big changes and others are looking for baby steps.  I tell them all the same things:

• Find one or two recipes a week you’d like to try.  They are pretty easy to find on the internet, if you know where to look.  I’ll give some resources at the end of this post.  Get the items you need into your house, and two thirds of your task is done! 
• Change to brown rice pasta.  The brand we use is Tinkyada and can be found at PickNSave and all health food stores I’ve been to.  Be sure to undercook it just a bit and you’ll never know the difference from your old stuff.  I always keep some in the house along with some Neuman’s Spaghetti Sauce(simple ingredients in his products).  This, along with tacos, are my fall back dinners. 
• Start making shakes.  To get more veggies into us, I throw basically anything I have in my fridge into a blender.  Carrots, zucchini, celery, cucumber, red cabbage, kale, avacado, fresh parsley, etc.  Then to sweeten a bit, I’ll throw a banana and some frozen berries, and pour either water or rice milk and sometimes even some ground flax.  I got this idea from the Montel Williams show and ran with it.  They used an orange, a head of romaine lettuce, and water.  A blender is all you need.  Very simple and you get so much out of it!

What I did at first was to take a field trip with Todd and the kids to a health food store, i.e. Outpost, Whole Foods, Health Hut, and wandered around for a bit.  It took a while to find things without dairy, eggs, gluten, white potatoes and almonds, but once you find a few starters, it gets easier from there.  Your restrictions probably aren’t as strict as Grace’s. 

Many people have been asking me when we’ll know if things are working.  Well, the nephrologist is going to be looking at her blood tests every three months, and we have another one coming up at the end of March.  BUT……..we visited Dr. Kim Saxe, our naturopath on Monday.  After evaulating Grace, Dr. Kim feels that Grace is definately improving.  One of the tools many alternative medicine physicians use for evaulation is feeling for a pulse in your wrist.  It’s a very subtle thing, and gives an idea of the general strength or energy of certain organs.  Kidney, liver, spleen and other organ pulses are what they feel for.  Dr. Kim checked Grace’s wrist pulses on Monday and mentioned that when we first came to her, she could barely get a kidney pulse from Gracie.  Now, she is actually feeling an improved kidney pulse, not a terribly strong one, but better than before.  This in combination with the dark circles under Grace’s eyes lightening and some other factors, make Dr. Kim feels there is definite improvement. 

The next day at Dr. Gandy’s office, Grace was rechecked by means of Muscle Response Testing.  Dr. Gandy checked for overall energy, emotions, chemistry, structure, integration, and a few other things.  Grace tested very strongly for all except structure.  Dr. Gandy, also a chiropractor, adjusted her, and then Grace tested well for everything.  I told Dr. Gandy about the wrist pulse improving and she was very impressed.  She stated that it’s such a subtle thing to begin with that any improvement is signifigant.  Both Dr. Kim and Dr. Gandy were very happy with Gracie’s progress.  WooHoo!

Dr. Gandy is keeping Grace on the Standard Process protomorphigen and the NET remidies for Scars & Adhesions and Water(the water system of your body i.e.kidneys, bladder, etc.).  Dr. Kim has changed now from draining/cleansing Grace’s systems to building up the kidneys and adrenals.  (In naturopathic medicine, the physician alternates between draining and building).  On that note, with Dr. Kim Saxe’s permission, I’m going to give a link to her website.  I’ve tried many times to explain naturopathic medicine when asked, and find it difficult.  Her website does an excellent job of clearly explaining the basic principles of this type of medicine.  It is:

http://www.milwaukeenaturopathic.com/

One of our new favorite shows is on BBCA, or the BBC America channel, just on basic cable.  Dr. Gillian McKeith hosts “You are What You Eat”, and she is awesome!!  Gillian is a holistic nutritionist and offers much knowledge and creativity in her quest to help people to improve their health.  Basically all her recipes are anti-inflammatory, which is basically what my family is on.  I just got her cookbook, ”You Are What You Eat Cookbook” from Amazon.com for about $21.00.  It is honestly the best cookbook I have ever had.  The few recipes I’ve tried are simple, colorful, flavorful, and very good for your body.  (If you do decide to get it, be careful to get the cookbook, not the one that’s her “You Are What You Eat” program).  She does a great job of prefacing every recipe with an explanation of what the ingredients will do for your body.  (Good for increasing energy, or kidneys, or for your liver, or to lose weight, etc).  I love having specific health intentions for my cooking!

Anyway, to find samples of her recipes, google “Gillian McKeith recipies” and you’ll find quite a few.  The lettuce wrap is one of our favorites.

Well, that’s it for now.  I’m off to eat some Golden Lentil Stew.  Yum!

Love, Angie

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Happy snowy February!

Many things have been happening since I last posted three weeks ago.  Grace is enjoying the snow.  She has great fun pelting me with snowballs as I use the snowblower.  Quinn started crawling two days ago, and Hollyn is not far behind.  Both saw the pediatrician yesterday, weighed in at 22lbs each, and the dr’s comment was, “they couldn’t be any healthier.  You make large children”.  Music to my ears.  Quinn can clap her hands, Hollyn is always babbling about either mamamamama or bob bob bob bob bob, and both smile all the time.  So precious!!  They are so easily amused and light up every time anyone looks at them.

I’ve been very busy not only with the twins, but with cooking, health food shopping and recipe hunting.  My knowledge of the benefits  of eating whole foods is expanding every day.  Lots of reading both on the internet and books has been even more eye opening for me. 

For example, we all know that MSG is a chemical flavoring put in Chinese food, right?  We also know that it’s really bad for us to consume and therefore only eat it once in a while, right?  Well, I recently found out that MSG is in a lot more than I ever suspected.  It is also known as ”natural flavoring”.  Try to buy a can of tomatoes without “natural flavoring” in the list of ingredients.  Try to buy a can of anything without it, for that matter.  I was stunned to see how many things in my home contain it.  It’s taken me a while to become an avid label reader, but my next step is learning to recognize the hidden nasties.  Dr. Oz was on Oprah a few years ago and gave a few helpful rules of thumb for label reading:

• If there’s more than 5 ingredients, don’t eat it
• If you don’t know how to pronounce an ingredient, don’t eat it
• If it says enriched or bleached anything, don’t eat it
• If it says hydrogenated anything, don’t eat it
• If sugar, in any form, is in the first 5 ingredients, don’t eat it

In the last two months, not only has Grace’s diet changed, but everyone in my family has done just about the same changes.  The babies are off gluten, dairy and eggs.  Todd, Grace and I are off gluten, dairy, eggs, and we eat limited amounts of organic meat and very, very limited amounts of sugar.  Todd installed a reverse osmosis water filter in our kitchen sink, so we no longer consume the heavy metals, chlorine and flouride in the tap water.  (The stuff in tap water is another horrific episode I’ll save for another day-you may want to do a little research). Ever since we have made these changes:

• None of us have been sick.  Not one little cold, runny nose or sore throat. 
• I’ve gotten my weight down to where it was before I had Grace!!  Pants I haven’t wore for years are perfect!  The best part is, that wasn’t my intention, just a beautiful side effect.  (Can’t wait for summer!)
• I have more energy than I can ever remember having.  I never crave a nap in the middle of the day like I used to. 
• We all sleep great at night.  Getting up in the morning is EASY.
• Babies haven’t had one diaper rash.
• Can’t remember the last time I had to blow my nose.
• My skin is healthier than it’s been in years.  (I’ve actually gotten unsolicited comments
• Grace’s chronic congestion is gone.

I could go on and on. 

A few weeks ago, I visited the Kinesiologist, Dr. Gandy,  for a few issues, the prominent one being a constant pain under my right ribs.  I had suspected it was my gallbladder for a number of reasons.  Anyway, Dr. Gandy did a lot of testing, agreed that it was gallbladder pain and addressed my other complaints.  The long the short of it is - the gallbladder pain and the other issues, some of which I’ve had for years, have all either improved or completely subsided.  She used clearing to help some of the issues, and sent me home with a gallbladder “support”, or a suppliment with things to help my gallbladder function optimally and to do the job of emptying itself out.  I have no doubt that had I ignored it, the pain would have continued and would have eventually had my gallbladder removed.  Yay for preventative measures!  At work that night, I ran my symptoms past a few nurses and one doctor, and they all agreed that they would’ve suspected it was a gallbladder problem.  An astounding amount of them said at that point that they had had theirs removed in their late teens or early twenties.  Apparently, it’s a very common surgery, like removing tonsils or your appendix.  News to me.  I also found out that gallbladder attacks are extremely stress related (imagine that), are common in post partum women, and they are removing more gallbladders than ever now.  Hmmmm.  I can’t help but wonder what would happen if more people knew that they hold their health in their own hands. 

As for Gracie, we have no new test results to report.  The nephrologist antipicates doing lab draws about every three months, and hasn’t heard back from the pathologists on the East coast, yet.  Honestly, I don’t hold out much hope from them.  Anything they may suggest will either be experimental or a shot in the dark.  If there was any solid or successful treatment, we would have known it by now.  But, fear not, I don’t.  Grace’s health is in our hands and spirits.  Dr. Gandy, and the naturopath, Dr. Kim are working hard along with us to achieve balance within Grace’s body, and that will help her to heal.  We do have real hope and anticipation that her kidney tissue will actually heal, and Grace’s condition will be reversed.  We know someone who did have success healing/reversing what doctors told him was fatal.  I hope to tell that story soon.  I need more time!!

 Please keep your thoughts bright and sunny when thinking about Gracie, or anything else for that matter.  I hope you are all healthy and happy and enjoying this beautiful winter season!

 Love, Angie

Hi again to everybody!  Well here I am, the only one awake at 9pm.  Todd will be getting up at 11pm to work the snow, and all my little girls are sleeping like they should.  Ahhhh.

So, I left off after the naturopath visit and baby cares.  The next leg on our journey was a visit to our Kiniesieologist/Chiropractor, Dr. “Kat”.  This was nothing short of phomenomenal.  Please keep your mind wide open, as the information I’m about to share is very non-conventional.   

The science of Kiniesieology is, in my opinion, astounding.  Their methods of using Muscle Response Testing (MRT), Nutritional Response Testing(NRT),  Allergy Clearing(NAET), Emotional Testing(EFT), etc., are incredible to watch and even more fascinating to experience. 

Using NRT to check for food allergies, Dr. Kat was consistent with the results of the earlier blood test, once again finding the problems with gluten, eggs, dairy and some nuts.  She determined Grace had a bit of an electro-magnetic issue, and as we all know, our bodies are electrical(it’s true, and scientifically proven).  Dr. Kat suspects it’s probably a result of being in the hospital, and being in the radiology dept for her biopsy.  The electro-magnetic fields in hospitals are incredibly potent.  The treatment for this is two tiny magnets for Grace to wear every other day, to activate points that will stimulate the kidneys.  Dr. Kat also tested Grace for emotional issues.  She found that Gracie does have quite a bit of emotional holding, especically in her kidneys. 

Here’s where it gets kind of creepy.  In Chinese medicine, it is believed that each organ is related to an emotion, a body tissue, a sense(sight, taste, sound, etc.), a season, a color, and a few other things.  The kidneys are related to the emotions of fear and dread.  Let’s review the past year, shall we? 

• “high risk” pregnancy-Mom’s terrified
• premature twins/NICU time-Mom’s terrified
• postpartum hormones-Mom’s a wreck
• not one, but two new babies in the house-Grace’s summer stunk
• breastfeeding hell-Mom’s a guilty wreck
• kidney problems discovered in Grace-Mom’s a wreck

So, want to know what Grace reacted to when tested further for emotional specifics? FEAR for Mom.  Goosebumps, huh?  Also, in my first entry, I mentioned that Grace had really poor hearing.  Can you guess what the sense related to the kidneys is?  Hearing.

There’s more to report from this visit, but it’s really late and I need to wrap this up. 

 By the way, Grace had a blood test last week and we recently got the results.  The nephrologist tested her electrolytes, which looked good, and her Creatnine.  The Creat. was 1.o at the beginning of December, and has gone down to a 0.8, which is great!  Normal Creat. level for her age is 0.5 or less, so the nephrologist feels Grace is stabilized and wants her to continue the low dose of the ace inhibitor she’s been taking.  Whatever we’re doing, it’s working.  Yay!

Thanks for all your support, positive thinking and comments!  They really do help.

I hope to get more pics of Grace or her artwork on soon!

Angie