Saturday, October 18, 2014

The Almost Never-Ending Barley Trial.

The food trial that never ends!  We usually do two week trials, seven days on, three days off, four days back on.  In the first seven days, we work up to a full serving.  On the first day after the break, we give a small amount (some kids react only after a break from a food), then for the last three days we try to get a full serving in Myra each day.  The break helps us make sure she won't react after taking time off from the food, and also helps eliminate any weird symptoms.  For example, if Myra starts waking at night (she usually doesn't these days), we can see if it continues during the break (in which case the cause might be teeth or developmental stuff rather than the new food).

I don't even know how long ago we started barley, five weeks maybe?  A few nights into the trial, Myra woke up once.  The next night, twice.  I forget the exact sequence, but it was annoying.  She went back to sleep easily, but we didn't know what to think in regards to the barley.  We got up to a full serving pretty quickly, so in those first few days when she was doing fine, she had eaten quite a bit.  I was hopeful for barley, but I also want to be sure her safes are actually safe (remember our hesitation with avocado?).  The first night of the break, Myra slept great.  Hmm.... The second or third night she woke again (I don't even remember exactly, but I know we had a combo during the break).  When we brought it back after the break, she was still waking.  So, our regular two week trial turned into three.  We weren't ready to call if safe yet, but nothing was alarming enough to call the whole thing a fail either.

Then, life happened.  We had a hectic week or two, Trevor was gone a lot, blah, blah, blah.  We still weren't comfortable making a call since we had so much other stuff going on, anything could have been to blame.  Myra has been back to normal with her sleeping lately (7-7, no waking), so yesterday we crammed a bunch of barley into her.  She slept great!  So, many weeks later, we are officially calling barley safe for Myra.

This is pretty exciting because grains can be tough and, actually, barley "only" has a 72% pass rate with FPIES kiddos.  We have been using pearled barley which will awesome as a hot dish (that's casserole to you non-Minnesotans) base or for serving things over it, much like you would with rice.  The girl loves it, too.  I usually mix in some blueberries and she just goes nuts.  It's a little sticky, so it has been really helpful as she learns to use a spoon.

Wow, that was a really long way to say: after much back and forth, barley made the cut!  

To read more about Myra's journey with FPIES (diagnosis and symptoms, food trials, food selection, etc.), click the "FPIES" tab above.

Wednesday, October 15, 2014

Causes: Breast Cancer Awareness Month.

Breast Cancer affects many of us, whether directly or indirectly, myself included.  I have known quite a few people who have/have had it themselves or their loved ones have.  I will admit, I focus more on other causes in October, not because breast cancer isn't worthy or important, but because it's not the only one that is.  My friend, Taryn, was gracious enough to share her story and that of her family with me and now all of you.  How and when breast cancer affects people can vary a lot, just like with many other things, and this is her story.

We all know that October is Breast Cancer Awareness month.  We all see a lot of pink on a daily basis during the month but what does it mean for someone who has been personally affected by this.  I have been affected by this cancer in many ways, my maternal grandma, my paternal grandma, along with great aunts (my paternal grandma’s sisters), and countless friends.  These life touches are on top of the fact that I am a previvor, I carry the breast cancer gene and will one day most likely develop cancer.  I’m sure most people will be shocked that I say that so bluntly but it is my way to deal with it and it is also a real fact for me.  I originally wrote this blog post after Angelina Jolie came forward with the fact that she had a double radical mastectomy.  By no means am I belittling the decisions that she has made for her body but am talking about my choices and my decisions.

Before I get into the facts about BRCA I am going to go back quite a ways on why I decided to get tested and how we found out that our family had the gene (and the shock of the side that had it).

Going back to way before I was even born, my maternal grandma was diagnosed with breast cancer in about 1952.  My mom was born in 1954 my grandma passed away 12 years after my mom was born.  In Nature Outlook Journal there is a statistic listed that from 1944-54 there was just a 40% chance of survival rate to 5 years.  By 2004 that same statistic was up to 85.8%.  
 
 
My mom and her sisters always prayed that they would get passed the age of 52, the age at which their mom passed away.  Her cancer went on to spread to her bones.  They all got passed this age and had mini little parties.  We were always worried about this side of the family.
 
 
In January of 2003 my paternal grandma was diagnosed with breast cancer.  She has been cancer free from that time forward.  My grandma had 2 sisters, 1 was diagnosed with ovarian cancer and died of this at the age of 83.  The other sister was diagnosed with breast cancer at 52 and died at 72.  We do not know if these sisters had a genetic mutation as they passed away before we started the testing.
 
 
My paternal aunt decided that she would like to find out if we do carry the gene.  They started the genetic process after seeing these strong indicator of genetic possibility.  My grandma was tested and she was found to have a deleterious mutation on the BRCA2.  My aunt proceeded to get tested at this point, there was a 50-50 chance that my aunt would have it.  My aunt found out that she had this mutation also.  
 
 
My father decided that he would not be getting tested for this mutation, as what he had to change due to age didn't warrant knowing in his mind.  I decided that I wanted to have my test done.  At this point we didn't know if I would be able to be tested as the link wasn't there for me.  The genetic counselor decided that it would be a good thing for me to be tested.  I came back positive also (this was July of 2011).  At this point we were batting 100%, grandma, my aunt, my father and myself. Grandma's gene's are strong!!!

A maternal aunt of mine went and talked to a genetic counselor and they said that there was a very very small chance that that side of the family having a genetic mutation.

There are many facts and myths out there.  I am going to start with some facts and then go into the myths.
 

Facts:

With BRCA1 or BRCA2 the chance of getting breast cancer is 50%-80% (87%) depending on what statistic that one looks at, general population 7%.

With BRCA1 or BRCA2 the chance of getting ovarian cancer is 27-44%, general population <2 o:p="">

If you are male and have the BRCA1 or BRCA2 gene you have a 6% chance of getting breast cancer compared to .05% of general population.

If you are male and have the BRCA1 or BRCA2 gene you have a 20% chance of getting prostate cancer compared to 15% of general population.

If you have BRCA1 or BRCA2 you have a 2-4% chance of getting pancreatic cancer compared to <1 general="" o:p="" of="" population.="" the="">

You can not be denied insurance coverage because of the genetic testing. You can not be denied a job for having the genetic testing (thou the United States Armed Forces can deny you).


Myths:

I won't have insurance just because of this test, can't happen Congress has passed this as a law.  Fact see above.

Breast tissue is only in your breasts (what is in front).  Fact: Breast tissues goes all around to the back of the body, these are hard places to find tumors if they start there.


What can be done?

In this section I will talk about what I am doing about my positive diagnosis. I will also talk about what can be done.

I have decided to NOT get a mastectomy at this time due to using other surveillance methods.  The mastectomy would reduce my chance by about 90% but as with the fact that breast tissues goes a lot farther than can be removed with a mastectomy.

I have decided to NOT have an oophorectomy (a hysterectomy along with my ovaries) at this time due to wanting to have children. I will most likely have this completed in the next 10 years if not 15 years.

I have also decided to NOT go on any drugs to reduce my risk, drugs such as tamoxifen, my grandma took something like this for a total of 7 years, 2 year of it was tamoxifen and 5 years of another drug after her breast cancer to help keep it in remission.

I have decided that I will get semiannual testing, for myself in February I get a breast MRI, this is due to the density of young breasts.  In August I get my annual mammogram.  I have twice had to go back in for more testing, I am thankful that I have never had to have biopsy but I have had to have ultrasounds.  At my yearly female exam they do an ultra sound to check my ovaries, if anything would come back abnormal there we would get another ultrasound in 6 weeks.  At the age of 30 I will also start getting a blood test to check for ovarian cancer.

If you have made it this far you might be wondering what my hopes for October are. My hopes for October are that we no longer have to have an awareness month for breast cancer that we can stop seeing potato chip bags, lip gloss, batteries and everything else under the sun in pink for the month of October.  I hope that we will have a cure so that we can focus on other awareness’s by no means am I saying don’t buy the pink items, they do help but to be aware of why you are buying pink and to think about it all year and not just for one month. 

Please ask any questions that you have! Also please feel free to share this!
 
Note from Ali: I do not want to turn this into an entire different post, but this is one statistic I did not know about until recently.  While I clearly have no issues with formula feeding babies and toddlers (my own has been thriving on formula since she was 10 months old), this is important for women to know. From the American Cancer Society, "For every 12 months of breastfeeding (either with only 1 child, or as the total period of time for several children), the risk of breast cancer decreased by 4.3%, compared to women who did not breastfeed. Risk decreased by 3.4% for each child breastfed, compared to women who did not breastfeed.  This lower risk did not differ by women's age, race, numbers of births, age at birth of first child, family history, or country of residence."  Read more on this correlation here.

Click here to read the other posts in this series.

If you have a story you'd like to share regarding a specific cause, please feel free to contact me using the contact tab above.

Wednesday, October 8, 2014

Vaccines.

Snickering over here wondering what bloggy world thought a title like "Vaccines" would mean.  I'm not going to argue for/against vaccines here, sorry folks.  And you're welcome.

While we fully vaccinate and on schedule (ourselves and our offspring, dog included), this post isn't about how we came to that conclusion.  My biggest peer pressure to other parents and parents-to-be on this topic is to please make an informed decision.  Do your homework, discuss it, and decide what you think is best.  That's kind of my philosophy on parenting in general.  Well, that and be flexible and open minded as things can change.  Anyway, that's all I've got on that.

Since we vaccinate Myra, she needed a flu shot.  We don't do shots during a food trial and won't start a food trial when shots are coming up, just to avoid and potentially confusing symptoms.  Since our fiasco on Monday, we're taking a week off food trials, so now was the perfect time to squeeze in her flu shot.  Funny story, when I called to make the appointment at the shot clinic, they asked, "When does Myra want to come in for the shot?"  I said, "Uh...I don't think she does?" The woman on the phone got a good laugh.  Anyway, back to my point...

We have always (except maybe once? I think we forgot our carrier) "worn" Myra during her shots.  However you can get the job done is fine by me, and I mean no judgment by how this may sound, but I just can't bring myself to physically hold Myra down while they give her shots (as many as three in a row).  I'm all about vaccines and Trevor and I have agreed the benefits outweigh the downfalls for us, but that doesn't make the act of getting shots enjoyable for anyone. 

For shots, my preference is a soft structured carrier (Tula, Ergo, Boba, Beco, Lillebaby, and many other options).  I put her in pants that can easily be pulled all the way up (or shorts if it's warm), but leg warmers would be awesome for this purpose, too.  I wear her on my front and just make sure the nurse will have plenty of upper thigh access.  I don't ask for their 'permission' because they are still completely able to do their job.  I guess I figure if they want my help restraining my child, we're going to do it on my terms.  By asking (I did once just to be polite), the nurse just gets a little flustered trying to figure out how it will work, when I know it will be just fine...and easier on everyone.  Plus, well, it's my kid, so I don't ask for permission.


So, Myra in carrier, one shoulder strap down if that makes it easier, pants hiked up, I hold her arm down and the nurse gives the shot.  Done.  As I see it, much easier than trying to hold a baby (or toddler) down on a bed, especially now when Myra knows exactly what's coming.  I'm instantly holding Myra, we can walk around, sit down, whatever works best for her to relax.  I am able to grab my stuff to leave while still holding her.  Even if you have a smaller carrier that  might not fit perfectly anymore, that's just fine for this purpose.  In fact, having that extra access in the upper leg area is a bonus. 

Monday, October 6, 2014

Sneaky Avocado.

I had big plans for today.  I was going to bring Myra to work with me to get some paperwork done.  We were going to meal plan and grocery shop, then cook.  Heck, I was going to take a shower!

Note: I'm not posting this to whine, but people often ask what is FPIES like? Is it really that bad? Why do you need to vacuum my house before Myra plays here? Even though this is about more than a crumb, that's all it takes.

Remember that yummy, three ingredient pudding recipe I shared last week?  Myra loved it.  She gobbled it up and made a big, fun mess for breakfast.  Usually, at nap time, I put her in her crib wide awake and she puts herself to sleep.  Well, that day she was pretty noisy.  I thought that was odd, but just let her work it out.  When she started really crying, I checked the monitor to make sure she wasn't stuck or anything.  Not stuck, but she was clearly rolling around in a bunch of vomit.  I'll try not to get too detailed, but it was disgusting and smelly.  I ran in there, grabbed her, and got her in the tub.  She was happy and playing like usual within minutes.  I wondered about the avocado because we don't give it to her often.  Even though we did a full trial of it, avocado seems to trigger her eczema so we're pretty conservative with it.  I heard of that easy recipe and thought it sounded like a great way to work avocado back into Myra's diet since there are so many health benefits to it.  By the timeframe from putting her down for her nap to when I went in there (not long), I guessed she "only" threw up once or twice.  Compared to 5-6 times for her previous food fails, I was optimistic it was a fluke or a stomach bug or something and tried not to panic about losing avocado from her diet.

She bounced back quickly, drank a bottle, and took a good nap.  She slept fine that night, and everything went back to normal.  Trevor was gone and I never got sick, but I don't actually get sick often so I wasn't terribly surprised.  Trevor and I agreed it very well could have been a virus of sorts and we should give avocado another try.  I planned to wait a bit just in case, but last night I asked Trevor if we should just do it and get it over with.  I was assuming it would be fine and I could stop wondering.

The rest of this talks about vomit, there's your warning.

So, this morning I mashed up an avocado and fed it to Myra as a dip with some Cheechas.  She wasn't so sure, but ate enough for me to be confident we'd know if avocado was bad news or not.  A couple hours later, she started getting whiny.  And clingy.  And she even gave me two big, long, cuddly hugs back to back.  She'll give me a hug if I ask for it, but she never volunteers hugs like that.  Then the raging drool and cough-y hiccups started and I knew what was next.  Again, I'll try to spare the details, but it was bad.  At the time, we were sitting on the kitchen floor together so I just held her while her puke went everywhere.  She had just had one of her Neocate Splash "juice" boxes (orange-pineapple flavored hypoallergenic Boost type drink) which, of course, smelled all kinds of disgusting as vomit.  I asked her if she wanted to take a bath, she loves baths, and through tears she said and signed "bath."  I left the puke on the floor to deal with later.

I got her in the tub with plenty of bubble bath and hoped that, like last week, the worst was over.  As they say, "you can wish in one hand and..." I was wrong.  More vomiting in the tub accompanied by lots of crying, whining, coughing, thrashing.  Vomiting is never cute, but these "GET THAT TOXIC GARBAGE OUT OF MY BODY RIGHT THIS INSTANT" vomiting episodes are scary to watch.  (If you're curious how these kids change during reactions, here is a great video showing what it's like.)  I got her out of the tub, she wanted nothing to do with clothes and was all kinds of upset, so I didn't fight it.  I laid towels down on the couch and tried to get her to relax with me.  It wasn't too long before I could sense more vomit coming, so I took her back to the bathroom and held her over the tub while she puked and coughed and cried.  At this point, I was contemplating taking her to the ER.  FPIES kiddos can, and often do, vomit to shock.  When they start vomiting, they need IV fluids.  If they get too dehydrated, it can be very difficult to find a vein to give them fluids.  I was able to get her dressed (I couldn't decide if she'd be hot or chilly, so I just picked one) and I had to go to the bathroom so badly I couldn't hold it.  I put her down on the bathmat and she passed out (the falling asleep kind) as she cried on the bathroom floor.  I debated just leaving her there to sleep, but I couldn't do it.  I picked her up and brought her to our bed (there's a first!) because we have a mattress protector so I didn't have to worry about a mess.  She woke up and wasn't happy about it.  I calmed her down again and she fell back asleep but I was in a horribly uncomfortable position and didn't dare to move.  I had my phone and water, but that's it. 

Trevor got home from class and cleaned up the vomit (bless his heart) then brought me some throw pillows so I wouldn't end up in physical therapy (seriously, I don't even know how I got myself in that position).  Myra rested for a while, but didn't take a "real" nap.  When she woke up, I asked if she wanted to go see Daddy and she perked up.  She drank water and ate Cheechas and Kix while lying on the couch with Trevor.  I was able to eat something and change clothes (again).  That was essentially the end of the drama.  From all I've learned about FPIES, these reactions really wreak havoc on their guts, so I'm sure she's still not feeling the greatest.  She had a small supper and two small bottles, plus more water, so I think she'll be okay as far as hydration goes.  Her demeanor bounced back quicker than one would expect, but after the crisis mode part of a reaction, she's seemed okay for the most part.  We haven't had an acute (vomit) reaction in over a year, so I wasn't sure what to expect.  Here's hoping tonight goes well!

I guess this is a humbling reality check that Myra hasn't outgrown her FPIES, we aren't exaggerating symptoms, and all these precautions are necessary.  Trevor and I both admitted to beating ourselves up a bit over it afterwards.  Of course it was the avocado.  We were skeptical all along.  I didn't get sick after she was last week.  The timing of the vomiting fit perfectly.  But, we needed to be sure and it certainly could have been just one of those random things, too.

So, no more avocado and I will shower and get my work done tomorrow.

Saturday, October 4, 2014

Causes: Domestic Violence Awareness Month.

Claire and I met online due to a mutual interest in raising awareness of domestic abuse.  She lives in England, but domestic violence is universal.  It does not discriminate or differentiate.  Domestic Violence is a very personal and often misunderstood cause; therefore, it is not one I am particularly comfortable asking people to share.  I am so grateful Claire was willing to tell her story to me and all of you. 
 
People warned me to stay away from him, but  in the throws of a new relationship all sense goes out of the window. He charmed me & I fell for it all. I was oblivious to the warning signs. When he started telling me what to wear I thought it was because he found me attractive in those clothes & I wanted to please him. Before long this man had worn me down & made me feel dependent on him & that I was lucky to have him because no-one what would want me. I didn't even realise at the time that he was sexually abusing me also. 
 
The relationship progressed quickly & I became pregnant. I already had a son from a previous relationship. Things changed. Suddenly he became extremely verbally, mentally & emotionally abusive. It was awful. Soon after he became violent. My son watched this man try to strangle his mother on several occasions. He threw me around a caravan & into radiators. I wore long sleeves at all times to cover my bruises. At 7 months pregnant he put me in hospital with a suspected broken neck. I believed this man would kill me.
 
The police were sometimes called by neighbours. I had no choice but to cover for him. He told me he would take my baby away if I said anything & claim that I was crazy in the head. I was trapped. I clung to the hope that he would change when the baby arrived & we'd be a happy family. I didn't want to let my children down & deprive them of a father.
 
I spend a couple of weeks in hospital at the end of my pregnancy. Maybe it was a blessing in disguise. He couldn't hurt me there. Instead he mentally & emotionally abused me.
 
10 days after my baby was born I became a single mum of two. The abuse didn't stop. He just used contact & solicitors to harass me. Eventually I grew strong, independent & able to recognise that it is better for the children to not have a father about than to have a bad one who they see abusing their mother.
 
There is absolutely no circumstance where domestic abuse is acceptable.  Victims will make excuses for their perpetrator & believe they deserve it, but this is never true. I urge anyone in this situation to reach out to the organisations that want to help you break free. Domestic abuse is a crime. If you don't leave for yourself, do it for your children. Do you want your son to grow up thinking it's ok to treat women that way? Do you want you daughter to think it's an acceptable way to be treated? Afterwards I found out this man had abused my son also. My son never told me. Don't let that be your child.

I  am living proof that there is life after abuse. I am now married with a nice house & job. Things are great for me now. There is a light at the end of the tunnel for everyone. 
 
The Power and Control Wheel is a very impactful visual that shows the eight most common ways batterers abuse aside from physical and sexual abuse.  This was developed by Domestic Abuse Intervention Programs, Home of The Duluth Model.  This wheel has been adapted for a variety of other situations (child abuse, equality, creator) and is also available in Spanish.
 
 
 
Domestic Violence resources:
VINE Link - victim notification network