Friday, October 24, 2014

Random Fall Photos.

Pumpkin Patch with cousins




Hallelujah for passing corn! Wouldn't have been able to let her do this otherwise.





Feeding ducks with Grandpa





Date Night at Big Brothers Big Sisters Volunteer Appreciation Dinner




Bubble Bath Fun





Dancing with Daddy

She grabbed his hands, said "dancing?" and wouldn't let go.


Glasses



That's all, everyone.  Short and sweet!

Tuesday, October 21, 2014

Undiagnosed FPIES in Hindsight.

This is an email I sent to a friend on April 26, 2013, when Myra was three months old.  We were in the middle of hell with symptoms that it felt like no one would take seriously.  Many nights, I was getting zero sleep, as in not crappy sleep, but zero.  I would get an hour here or there (including naps), but I was not sleeping.  Even when Myra would fall asleep, I couldn't (explanation in the email).  My friend has five children, so she's basically an expert, right?  Plus, she's essentially always available by text message, bless her heart, so she heard the most about our drama days.  Many of you reading this have probably heard bits and pieces as well, but it didn't take me long to just shut down and not talk to anyone about it because I really felt like most people didn't get it (I mean, how could they?).  I got all kinds of advice that was either clearly not the problem or something we had already tried.  Sorry if that sounds grumpy, but I/we really felt like our hands were tied and we had to just deal with it.  I took Myra to her doctor for this issue three times and he even encouraged me to get a second opinion-I did and it was even less fruitful (an apathetic doctor with bad "advice," at least Myra's primary care doctor really seemed to care, just had no answers).  For more information about our journey to Myra's FPIES diagnosis, including connecting the dots with other symptoms, (which didn't happen until she was 10 months old...), click the FPIES tab above.  Oh, and sorry for the potty mouth (it's actually not as bad as I thought it was), but I'm not going to change what I said...it was a really hard time for all of us!   
 
Read this when you have 100 (literally) hours to kill. It's long.
 
I wrote this all out in my due date club group but I thought I would throw it at you too since I probably haven't explained it this detailed and I've been up for 2.5 f*cking hours (edit: 3 f*cking hours after writing this) and I don't actually get "tired" I just turn into a wacko who feels like she's going crazy.
 
Someone suggested overstimulation which very well could be the case. Trevor loves to get her smiling by whistling and snapping and I'm sure I do stuff that isn't helpful either, but I don't know if that would explain the issue in the middle of the night either. She slept awesome Sunday night after our trip to see Jenny and her napping was pretty meh that day so I'm not convinced its overtired, but could be. Trevor needs 1-2 hours of tv time at night to relax his brain enough to fall asleep, sometimes in the middle of the night even if he's been particularly frazzled by Myra. So, that makes sense for bedtime, but I'm not sure if that just carries over to middle of the night too??

Also, some people are convinced she's teething. Honestly every time I hear that I want to slap them. I know it's possible, but not super likely. I realize I could be wrong. She drools like crazy but everything I've read says that's normal for this Age, teething or not. She's constantly gnawing on her fingers, but she's always had her hands up at her mouth, even in the womb, I have ultrasound photos to prove it. No visible signs of teething in her mouth. She sucks on the straps of the carrier when she's in it, but again normal for her age whether teething or not.
 
Anyway!!! Here's exactly what we're dealing with. Again it's not every single night, but I'd say average 5 nights a week. 
 
Really long question so if you're bored out of your mind and have any ideas I would love to hear them. We're having issues getting Myra to STAY asleep at bedtime. It's not that she's fussy or colicky, we can get her calm and relaxed just fine. We can generally get her asleep just fine, but usually 20/30/40 minutes later she starts whining. Not crying (at least not at first), but whining/kind of a yell (usually this "meh, meh, meh" sound). She'll often do this for an hour or two (off and on, we don't leave her to do this the whole time, but she'll go through this 2-3 times before being asleep for good) after we "put her to bed" then once she's actually asleep she sleeps great (5-7 hours!). But then we go through the same thing at that wake up. at least it's just once a night I guess. We are not co-sleeping; she has been in her own room since day one and we're not planning on changing that. I've tried rocking/nursing her to sleep then moving her, putting her down drowsy, the Rock n play/swing/crib, noise machine, nightlight, no nightlight, humidifier, she falls asleep with a pacifier but sometimes it falls out shortly after she falls asleep yet she will stay sleeping for hours so I don't think that's the issue. We started probiotics 3 days ago and we use gas drops with every feeding and colic calm gripe water at night (she's extra gassy, our friends are surprised how much gas we can get out of her!). She's swaddled. We read the same two stories every night as part of bedtime. No older kids so the house is quiet. Like I said, she'll fall asleep easily and typically doesn't wake up right when I put her down, but rather 20-30 minutes later, sometimes probably more like 10. I think I've explained everything...just want to explain it all because people usually jump right to colicky but that's not the issue. We then have the same issue once she wakes in the middle of the night, but again once she's truly back asleep she will stay asleep for 3-6 more hours, depending on how late/early it is at the time. Any ideas??? Just deal with it and it will get better? lol

For example, tonight (aka last night, I guess it's morning now. f*ck.) she was down at about 8:30, did the whiny thing at like 9:15, I went in and soothed her without picking her up, woke again at like 10 and I was like f*ck it, picked her up and rocked while I typed all that sh*t out in my due date club then just sat there Til almost 11. After maybe 15 minutes she whined a bit (a minute maybe?) but never really opened her eyes (video monitor) and put herself back to sleep. I finally relaxed enough and went to sleep about 11:30 (that whine has turned into a bit of an anxiety trigger for me :-/). She woke up at 3:15 so I went in, didn't turn any lights on, didn't talk to her, just put her right on the boob. She fed on both sides in 15 minutes or less (that's a lot for her) and I tried to burp her a bit but nothing so I put her down, left my hand on her Til she was OUT (not sucking on pacifier anymore) and left the room (about 4:00). I laid in bed and of course can't relax because I know what's coming...sure as sh*t about 4:55 the whining starts. I stared at the clock and listened to see if it would turn into a real cry (it's a fine line...) and after 7 minutes I was about to burst into tears (it's frustrating as hell) so I got up and came in her room. Picked her up and she let out a huge fart. Now it's 6:07 and she's passed the f*ck out and I'm torn between trying to put her down because I've been up since 3:15 or letting her sleep because I'm so fired up anyway I will have a big fat sob fest if I have to go through all this again when the night is basically over and we'll just end up calling it a nap.

Speaking of naps, she had been a nap rock star but even those seem to be more hit or miss lately which gives me the same anxiety about those which makes it hard for me to even nap during the day. I literally give myself pep talks about why I should be able to relax and sleep because this time was different but then often times it's not.

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.