Thursday, November 29, 2012

Melt my heart LOVE

I am so sorry for not getting the GI post up yet.  I started it.  Last week.  It has been a tough week - very busy and such.  No big deal, just the reason for the delays.  In the meantime - heart melting:  
My boys love each other.  Nolan says, "I love my daddy, my mommy, my big brother, and Calvie".

Monday, November 19, 2012

grain free waffles

As a part of my GI work (2nd post coming next) I am learning a lot more about grains and our health.  My new lifestyle of eating has reduced my 8-10 servings of grains per day down to 1, maybe 2.  This was a huge stressor.  I love grains, gluten free or filled.  The good news is there are ways to enjoy foods that usually are made of unhealthy grains.

These waffles are perfect because I feel like I am not giving up so much, and, it is healthier, so I feel good about what I am eating and what I am feeding my family.  Calvin loves them plain, like I do.  Sometimes we add a nut butter (which I will post a recipe for in the nearest of futures).  The boys do request butter and syrup.  So, I plan to work on maintaining organic dairy in the house for them along with low carb alternatives to the usual high sugar filled foods, like syrup.  Baby steps people!  Change is not easy and to make it successful, slow down.  One thing at a time, including the process of learning!

Maria's books are great.  I also have Wheat Belly I plan to read shortly.  In there I will find out how much wheat has changed over the last 5 decades and why it is causing so many problems.  It makes me think about the field work going on outside my home.  I am surrounded by tractors discing in corn stalks to help them break down.  Genetically modified corn stalks.  Those do not break down as quickly as ones that are not modified.  Let me ask, what do you think your body does with all that genetically modified corn syrup in most foods?  I'm not sure either, but the decrease in mental, emotional, and physical health makes a person wonder...ignorance about what we are eating is not blissful.

On a very positive note, I am feeling slightly better than I did a week ago.  My doctor said it will take months to heal, this is how homeopathy and natural medicine differ from the medical model of symptom management.

Here is my grain-free waffle recipe, adapted from Maria Emmerich

 Click on the photos to make them larger.

Saturday, November 17, 2012

Nummy Chicken Nuggets; Healthy Too!

Click on the pictures to see them a bit larger.

 I feel soooo blessed to have 3 boys with hearty appetites.  Evan is the easiest to please with food.  Nolan is a bit tougher but not bad and Calvin is mostly attitude, not physical about his food.  Meaning, he does not seem to mind various textures, etc.  I am very very grateful for this because I know not all kids with Down syndrome are this way.

Thursday, November 15, 2012

Happy "Heart Day"!

It has been 2 years since the following post was published.  Amazing how fast it has gone by!
We arrived for surgery around 10am. Calvin was such a trooper on only 2 ounces of milk since 9pm last night. We talked and he listened and talked back. He napped on and off. He did not fuss much, which made it sooo much easier on me. I felt bad that he didn't get to eat and had this day ahead of him. Well, it's behind him now and he is doing well. I am home and going to get a good night's sleep to go back in the morning.

There was some pre-op stuff to do with him and the anesthesiologist and surgeon came and spoke with us around 11:30. Then a fill-in pastor from our church came to say a prayer. He was a nice surprise! The anesthesiologist came to get Calvin and a few of the medical staff said they would take good care of him. That was very nice to hear.

Surgery started around 1:20pm. Dr. Sutton, who was supposed to be in St Paul all week - so a nice surprise, stopped in and said that things were started and looking good but that the surgeon, Dr. Overman, was concerned about the mitral valve. Dr. Sutton said he wasn't but Dr. Overman was. Well, I thought I'd rather hear it the other way around, but my brother Craig had a good point that it is Dr. O's job to be worried about it! That made me feel better. So, at about 3:30 or so, Dr. Sutton came in and said Calvin's heart was beating on it's own and they were working on getting him situated for the ICU. Dr. Overman came in after that and explained some things about what was found during surgery.

Calvin's left ventricle was/is small. It is small due to thick and extra tissue. Therefore, they left a small (2-3mm) opening in between the left and right atrium in order to get the blood pressure they wanted. So, he has a lower blood O2 saturation level. Yours and mine is 100% (should be) and his might be more like 85. That is a bummer for me, but I am holding on to lots of hope that God can improve that if it is his will. Calvin's heart could begin to have an easier time pumping, would thin out that tissue, and the ASD (atrial septal defect) would no longer be needed - so to speak. Also, that ASD could close up in time as well.

We came home to a home full of laughter and food! Thank you Beth, Kristi, Doop, Katie, and Grandma for all of the goodies! I think I ate more than my share of cookies! Less treadmill, more cookies...this week anyways!

God, if it is your will, please help Calvin's heart continue to improve and heal quickly. Thank you for the wonderful team of people whom we placed in Calvin's care today. Amen

Wednesday, November 14, 2012

It's So Typical, 1st Edition

GI Journey Part II is being put on hold for this special, 1st edition of "It's So Typical". And, tomorrow is a special post a'comin.

Often times I catch Calvin doing something that gives me butterflies, because it is just so typical (last year was the discovery of pulling off his own socks whenever the opportunity presented itself).  I know these things are no big deal and perhaps even unnerving, but there is something so joyous in it with Calvin.

Exhibit A) The case of the kleenex

"Maybe if I act thirsty or read a book she won't notice the mess I've made."   

"Better yet, clean with them."

I take care of my 5 month old nephew a few days a week, which leads to Exhibit B) Playing with his 'chew'; A.K.A. pacifier

Exhibit C) Bonding with brothers, especially Nolan (as has always been with these two).  Today Nolan declared liking being home because Calvie misses him...

When Cal sticks out his tongue like the pic above, he is humming as his motor noise.

A blurry one below because I couldn't decide if I should take a picture of this unexpected lone rider or run and catch him...he did perfect!

 More bonding:

Exhibit D) Getting in to cupboards.  Uncle David will be installing new handles that will serve as vessels to locking this boy out of the cereal cupboard!  Here he comes to beg!

Tuesday, November 13, 2012

My Journey with GI Issues, part 1

I have talked a lot (obviously, look at my previous post) about my struggles physically these past few months.  Really it has been nearly a year.

Well, yesterday, after my worst couple of days, I may have been given a lead.  So, before I go there, I need to go back to the beginning.  Not only for my sake in figuring it out, but to help someone, even one person, who is going through something similar.

June of 2011 I decided, after much denial, to go dairy and gluten free for my son Calvin.  Calvin was nearly a year old and suffering from reflux.  I'd lay in bed with him in the morning to nurse and KNOW I'd need a burp blanket near and ready to catch, soak, or wipe up whatever protruded from his little body.

Within days I noticed huge improvements.  It was enough to make me get more serious and look at all the labels and do whatever I could to support this change because it was not only saving me time and money (not as much laundry!) but I knew it was best for his development.  When Cal's therapists came, we'd actually get through sessions without the focus being on that!

Well, June turned in to November.  I had lost some weight, was beginning to add swimming to my nearly 15-20 mile running weeks, and also decided to buy a nice road bike and join the triathlon community.  I felt pretty good, minus the exhaustion of keeping up with work, Calvin's health, and a challenging diet.  Thanksgiving and Christmas were torture!  I just really wanted some tasty wheat and dairy!

I was a very stressed person last year.  A boy in kindergarten, working at a school with high needs, managing Cal's therapies, hospitalizations, chronic ear infections, nursing, sleepless nights, and a 3 year old just sprinkled in the mix, I was over all a miserable person merely trying to survive.

January rolled around and I started to physically change.  I did not place my finger on it right away.  I was craving my down time and celebrated survival with a gluten and dairy-free dessert nearly every evening.  I did a lot of baking.  And I also started doing something I had never done much of in my life, eating chips.

I would wake up with Calvin and was miserable.  I was tired, sure, but my stomach ached.  I ignored it, thinking I was just stressed and should not have eaten so late and just needed to get through until June.  Yep, 4 months.

Things never improved.  They did, however, become worse.

I finally started sharing my symptoms (the bloating and discomfort) with others.  I decided to go to the doctor.  I needed a physical anyway and I had not started menstruating yet.  Calvin was about 18 months old.  The other two were under a year - and I was nursing them plenty.

The doctors told me the lack of menstration was because of nursing and they were not worried (I saw 2 diff. doctors in the clinic I go to).  They did however order an ultrasound and xray to look at what was going on.  The verdict?  Severe constipation.  That was it.  I asked why?  I was told "I cannot tell you".  No one knew.  But I knew it was not right.  I knew, deep down, my lack of menstration and my bloating and constipation (something I'd never experienced before) were connected and not right.

I was referred to a gastroenterologist and also spoke with a co-work of my husband's.  This man is also a Naturopathic Doctor (ND).  Right away he said he suspected low stomach acid and said to take Betaine HCL.  This was in the beginning of June, 2012.  He also mentioned a possible candida yeast overgrowth but said I could not treat until I was done nursing.

Well, I had no intentions of stopping nursing yet but gave the HCL Betaine a try.  Within days I was empty.  I felt awesome!  What a simple fix!

Well, it lasted maybe 2 weeks and became sick with strep throat.  SO, here came an antibiotic.

I kept up with HCL, but different brands.

I became miserable once again.  I added in Smooth Moves teas, digestion teas, you name it.   Nothing was really helping.

The specialist mentioned fermentation to some foods but wanted to test dairy and gluten allergies.  I should have saved my money.  Nothing.  He also wanted me to eat fats and see how I felt.  So, I did.  I went to McDonalds and was miserable.  This all lead me to have a hidascan in August.  Nothing.  Felt fine, looked fine, was fine.

I have not seen him since.  It was not going to lead me down a path of healing.  I became desperate.  So, I started seeing an ND in a near by town, Osceola.  She helped me develop a plan for symptom management.  I goes like this: In one day eat 5 servings of protein, 1 serving of grains, 2 fruits, tons of level 1 veggies (low sugar ones like broccoli, not butternut squash), only water to drink, and that was about it.

Within days I felt amazing.  She adding in a lot of supplements as well.

I am going to stop here for this post.  Next time I'll post about the supplements and what has happened in the past 10-11 weeks.  It has been quite the learning curve for me.

Monday, November 12, 2012

A Road Through Hell

Warning: This post is a combination of fear, sadness, pain, frustration, hopelessness, and did I mention fear and frustration?

A view through the dark night into our yellow lit kitchen looked upon two grown people, a husband and wife, with heads hung low, looking anywhere but at each other.  Stay distracted, it is easier.  A seemingly innocent conversation surrounding a family member with a chronic illness turned into a war which lead to defeat.  The truth is, when someone in a home does not feel well, and it is beyond just a winter cold or flu bug, life is no longer the same.  I hate, hate, hate, that it is me.  I am the one with a chronic illness.

I feel my protruding belly.  It is visible through my pajamas, just out of the corner of my eye, or bottom of my eye.  Years ago it would have been a happy sight.  A baby growing in my womb.  But now?  It is not.  I am not pregnant.  Though I look like I could be about 4 months along.  Something that even if I wanted to be, I could not be.

You see, I have not started menstrating.  I have not had a cycle in 3 years.  Almost exactly.  I found out I was pregnant with Calvin around December 15th, 2009.  Back in a life I could never exist in again.  One with a different set of instructions.  A different manual.  Oh how I tread above black currents that threaten my demise.

Something is wrong with me.  Seriously wrong.  This hormonal issue threatens the break me.  Not because I need another child.  But because it is yet another symptom of who-knows-what?

If knowing is half-the-battle, then I have surely lost.  And, when does one wave the white flag and just surrender?

Is it stress?

When I say (1) having Calvin and (2) working last year were stressful, no one can possibly understand what that truly was like inside of me.  (1) At the time of Cal's diagnosis I had a young and challenging Nolan.  Who pulled hair, did not nap, climbed into everything, and required the most energy anyone has directly demanded of me.  And I was pregnant.  I became pregnant without blinking.  Many-a-woman's dream.  But wow, was Calvin a surprise in more ways than one.  I can only chalk it up to : He was meant to be.  I believe that simply and strongly.

Then just go ahead and toss in there a major heart defect and Down syndrome.  I am numb.

Numb to exactly what this has really done to me.  Scared.  Numb.  Scared.  Numb.  Sure, there is a ton of joy and gratitude but it comes at a cost.  (Do not misunderstand this as ungrateful or regretful.  I would not trade Calvin and this experience for anything, including my health.)  This breaks my heart and makes me feel guilty.  I am wrong to feel this way.

Then I feel angry and defensive.  Defensive to the one who laughs and suggests I am over-reacting why my tire goes flat on the way to retrieve my 4.5 year old from pre-school and I have a 2 year old and a 2 month old in the back.  The 2 month old that will not eat.  Will not eat.  Will not eat.  Cannot breath.  Will not nurse.  Who presents a line-up of 'what ifs' into my life.  Needs to go the doctor, to the cardiologist.  Who has visits multiple times a week from this therapist or that: who can do nothing for him that I really truly need them to do.  Who needs me to pump.  To wake up in the middle of the night to pump and feed him but will not eat.  Who has Down syndrome.  Who aspirates.  Who needs optimal nutrition.  Who cannot have breastmilk.  What does this all mean????  You see devil, I am not settling for less, no matter what you do to me.  But oh God, I am helpless.  Helpless without You.

I am angry at those who do not see that I am suffering.  Who never have to endure this test.  Who get by and can point at me and call me weak.  How dare they.  Do they belong in my life?  Sure they do.  But just like the baby who will not eat, I can do nothing else.  How dare they put more on my plate.  Again, devil, you will not win with these thoughts.

I sit here, about 27 short but very very long months later and do not know anything about myself.  I do not know and I am frustrated because if I do not know, know one else does either.  If no one else does, then I am alone.  I am truly alone.

I want someone else to take my stomach for just one day, so I can feel normal again.  But it is all mine.  And here I am, back in that kitchen with a yellow haze threatening to suffacate my relationships as it snuffs me out.  No more oxygen.  Burnt out with only sulfur emissions to turn others away from me.  So they can breath.  I am toxic.  How can I reignite?  How can I let go of the torture of the past 30 months?  How will my own body heal when Calvin's has not?  How can I let go of his needs and let mine heal?  I cannot.  I truly do not know if I can.  When he suffers, I must.  Because I am his mom.  I will not leave him.  Is this what this is about?  No.  Not fully.  But maybe my body is trying so hard to suck away his problems.  If so, then I need a psychiatric ward, not a doctors clinic.

The devil visits.  Puts doubts in to my mind and fears in my heart.  I feel weak and helpless on my own.  I know we are God's; His to fight for us.

I have rambled.  I am not sure where this will go.  I know that I feel horrible right now.  My worst time of every day.  Night.  Morning will come and I will feel better.  Such is the cycle.  I am pained to know I am not the only one suffering with GI issues. I just do not know what I did to end up here.  I do not know where 'here' is.  I do not know how to get anywhere else.  This is my road through hell and it is a maze.  With many dead ends.  And I just want out.  I fear Calvin is in this maze with me.  My sweet and innocent baby.  He needs out as well.  And I must fight for him.  What if?  What if God has put me in this maze with Calvin so I can lead him out as I figure it out for myself?

Thursday, November 8, 2012

A Wrinkle in Time

Is eating healthy truly an art?  How about playing healthy?

I do know I feel good about making things myself.  I may save money.  I will not save time.  Or will I?  And what does that mean?  The clock ticks whether I stand still or run.  Whether I laugh or cry or hum or grumble.  

How will I spend this time spent in construction?  With a boy leaning over my shoulder?  A boy running in and out asking with anticipation, "Is it ready yet?"  Maybe, just maybe, if I make something myself, the health benefits will give one of us another minute here on earth, another minute away from a clinic.  Maybe.  

Maybe not.  Life is not designed for us to be able to unwrap its gift ahead of Time.  Instead we have to choose how to unravel it.  One large piece or slowly, bit by bit.  Delicately.  Pulling back the tape, respecting the paper and the work of the Hand that went in to creating it.  We can be joyful and give thanks.  Or, we can be impatient, whiny, demanding, complaining.  We all have reasons to be both.