Sunday, September 14, 2014

All The Exciting Things We Did This Week.

Well, these posts seem far less exciting when they cover one week at a time rather than one season.  Surprise, surprise, I still got ramble-y and tangent-y.  Trevor is still plugging away one dental school applications, shadowing local dentists, school work, Army work, you get the idea. 

In addition to the usual excitement of grocery shopping, dishwasher unloading, dog walking, and the like, I/we kept fairly busy this week.

Myra randomly started doing this pose a while ago, and when she does we call it "yoga."  Here she is doing "yoga" with Daddy.


I work, as in actually go to work, one day per week.  I work as needed/sporadically from home the rest of the week, too.  I am a case manager for our local transitional housing program which is something I love.  We provide housing subsidies on a short term basis (up to two years) while meeting with the recipients regularly to help them get back on their feet (that's pretty vague because that can mean many things...whatever they need to accomplish, we do what we can to help).  Grandma Christy comes to watch Myra and they have all sorts of fun. 

Myra had a semi-rough night Tuesday night.  We're leaning towards blaming our barley trial, but she's got some teeth coming in so it's really hard to say for sure.  Barley has a fairly low pass rate among FPIES kids, but there's no knowing until we try.  She loves it and we need more grains, so we'll see how the rest of the trial goes.  Regardless of the cause, lack of sleep and/or interrupted sleep turn me into a slacker the next day.  Although I was a total monster, I got used to never, ever sleeping during Myra's first four months, but I'm out of practice and growing a human now.  Side note: some day I will post the email I wrote to Tosha in the middle of all that CRAZY about everything we had tried and how desperate I was.  I'm sure it's littered with profanity and "I don't like my baby" (it was a horrible, awful time, even though I loved Myra and I knew something was wrong and it wasn't her fault, it was all around ugly).  I digress.

Speaking of her FPIES, I recently learned many FPIES kids do just fine with Dum-Dums suckers.  Since we are a family of multi-generational dentists, I haven't really been on a search of candy she can have, but the girl deserves a treat sometimes!


Thursday was a busy day.  We had a WIC appointment right away in the morning.  I always schedule them right away to get it out of the way, so I don't have to plan my whole day around it...then I wish I hadn't.  I just have to say this: WIC is an amazing program.  They have single handedly saved us.  The cost of formula varies a lot based on how it's purchased (confusing, I know, click here to read the specifics).  Although Myra's formula intake has gone down a little as her food options have increased, WIC still pays out $491.20/month for Myra's formula.  Because of insurance contracts and other exciting stuff like that, we would still have to pay $207.79/month out of pocket after insurance if we would have to purchase it ourselves.  That's not including the cost of Myra's special foods (we have to get certain brands and some "novelty" food items because of all the hidden ingredients in other brands).  Bottom line: WIC has been a huge help.  They are now providing her Neocate Splash, essentially a hypoallergenic nutritional supplement/Boost type drink, in addition to her formula ($132/month).  ANYWAY...we had a WIC appointment Thursday morning.  Our little smarty pants has figured out that doctor's appointments go like this: nurse comes in, doctor comes in, nurse comes back=shots.  Apparently she's narrowed it down even more because she was totally fine with the WIC nurse until she put on gloves.  Then she got really nervous, wanted to sit on my lap, and eventually started crying-all before the nurse was even ready to do her finger poke (hemoglobin and lead test).  Myra was a pretty tough cookie and there was minimal drama after the fact, but the anticipation is not cool.  We had lunch with my boss at Applebee's and Myra spent her time jammin to the music and finding all the apples (in the logo) she could.  She had a view out the window, so she pointed out "truck," "car," "cycle (motorcycle)" the whole time, too. 

Myra isn't the only one with food allergies.  Rowdy is on a grain-free lamb food.  It was easy when Myra couldn't have any of the foods Rowdy can't have (he gets itchy, gnaws on his paws, flaps his ears all day).  Now that she can have corn, she loves to feed him her Kix and Chex.  We're working on it, but in the photo above she thought I couldn't see her feeding him if she didn't look at him while she did it...

ECFE (Early Childhood and Family Education) is back in session this week!  I'm on the Advisory Council, which is tons of fun, and we had our first meeting of the year.  We started planning the events we'll be doing this year, divvying up duties, and learning about some really cool new programs coming to our area (like the Dolly Parton Imagination Library).  On Friday, Myra got to start school.  She is in the toddler class for one year olds.  We go every Friday for an hour and fifteen minutes.  The first fifteen minutes is free play then circle time (welcome the kids, sing a few songs).  After that, the parents go to a different room (separated by a divider left open just a tad, so the kids can come find us if they want).  There is a topic/focus for both kids and adults every week (kids: physical motor skills, sensory activities, listening and understanding, exploration, etc. adults: what to expect at one, one year old play, food and nutrition, how to get stuff done with a toddler in the house, etc.).  Myra loves going, the kids get to play and explore while having a focus topic; I meet wonderful people and love learning new things.  In fact, we still get together regularly with the moms and kids from our very first ECFE class (0-3 month newborns).


First day of school 2014!

Saturday was babywearing meeting day!  (I will soon be putting together a post on our group's blog about what exactly happens at meetings--I will link it here)  We have learned so much and met some awesome people from our group, so when it works out to get to a meeting we love going.  Myra likes playing with the kids, we get to try other wraps and carriers, and I get to help other care givers learn about babywearing.  In a nutshell, we start with introductions, have a demo (this month we talked about soft structured carriers, the backpack style ones, then split up into small groups to help people learn what they came to learn).  The photo below shows about half of the people who were there.

 
 
And a couple extra photos from this week:
 
Our little book worm.  She's reading a book called "Birds Have Beaks" all by herself.  She turns the pages and says "beak," "beak," "beak."


Always a little bigger by the end of each day.  No surprise, but a bit bigger than I was at 18 weeks with Myra!
 
 



Medical Need Formula Letter.

These auto-post to my Facebook, so to those of you reading it because you saw it posted there: sorry (maybe).  This is a letter Myra's allergist asked me to write to help him fight the nonsense of medical formula costs for these tiny humans who really need it.  It's a messed up system.  Read on if you'd like, but I'm posting this just so I can refer back to it in another post and share with other FPIES families.  This was written on February 5, 2014.  Myra is now on a toddler version of this same formula and it lasts her slightly longer, but the point still stands.


To whom it may concern:
I am writing to make you aware of the costs for the amino acid based formula my daughter, Myra, needs due to her Food Protein Induced Enterocolitis (FPIES).  She is currently on Neocate Infant with DHA/ARA.  Our insurance company is Tricare, specifically TriWest, managed by United Healthcare.  While they do cover the formula when purchased through a medical supply company, Tricare only pays 80% of the costs.  The remaining 20%, our cost, adds up very quickly since one can only lasts Myra 2-3 days. 
There is a substantial discrepancy in cost based on where the formula is purchased. 
$162.29/can from Apria Healthcare (insurance pays 129.83, we pay 32.46)
$94.47/can from Edgepark Medical Supplies (Insurance pays 75.58, we pay 18.89)

If we had the option to purchase the formula with insurance coverage directly from Neocate’s website, or if these medical supply companies followed the same pricing as Neocate’s website, both Tricare and I would save a considerable amount of money.
$38.75/can from Neocate’s website (when purchasing 1 case) (insurance would pay 31.00, we would pay 7.75)
$38.00/can from Neocate’s website (when purchasing 2 cases) (insurance would pay 30.40, we would pay 7.60)
$36.10/can from Neocate’s website (when purchasing 2 cases at their auto-reorder rate) (insurance would pay 28.88, we would pay 7.22)
 
Myra has been going through 12 cans per month, give or take a couple cans.  If we used Apria for her formula, it would cost us $389.52 out of pocket every month after insurance paid $1,557.96.  However, if we were able to purchase the formula directly from Neocate’s website and still receive insurance coverage, it would cost us as "little" as $86.64 per month after insurance paid $346.56.  Clearly, purchasing this formula through a medical supply company is costing families and insurance companies a significant amount of money.  It is worth noting that this amount is for one month and many children with FPIES, Myra included, will need to be on their formula well beyond their first birthday.

Click here to read about Myra's FPIES (journey to her diagnosis, food trial info, recipes, and more).

Sunday, September 7, 2014

Summer 2014.

Well, this is embarrassing: one post about our entire summer.  Once I get out of the blogging groove, it can be hard to get back in it.  So, here goes nothing!  (Also, this will be long so I highly doubt I will go back and look for typos...hope it makes sense!)




If you don't care why I haven't posted all summer, you can skip this paragraph.  If you're nosey, read on.  I went back to find my last real post (not counting my Causes posts, which are definitely real, but you know what I mean) and it seems I was a bit of a blog failure this spring, too.  When I sat down to write this, I didn't intend to start out with this big explanation, but here it is.  I found out the day after Easter that I was pregnant.  I had some weird tests (really light, slightly darker, light again, darker, etc.) for a week and finally went in for blood work a week after my first positive test.  My HCG and progesterone were low (HCG 34 and progesterone almost 0) which was definitely not a good sign for a pregnancy.  I went back 48 hours later for a repeat; ideally, HCG would have at least doubled in that time and HCG was 1.  So, no baby (a very early miscarriage, or might even call it a chemical pregnancy).  Because of the weird tests, neither of us totally got our hopes up and definitely never had a "woo! we're having a baby!" moment.  My body didn't care and I still felt pregnant that whole time (sick, tired, blah).  Luckily, I got pregnant again a few weeks later and I'm now 17 weeks and feeling baby kicks every day.  Because of my history (two losses), my doctor ordered an ultrasound and blood work at my 8 week appointment.  Baby looked good but my progesterone was low.  I never had it checked with Myra and she was totally fine, but my doctor wanted to put me on progesterone just to help support the pregnancy until I hit 12 weeks.  So, I got two rounds of two shots in the butt followed by a month of suppositories and all was well.  ANYWAY, what that all really means is I've been tired and sick then extra tired and extra sick (progesterone side effects) for most of the summer.  It's only been the last few weeks I have been feeling pretty darn good, but I still love naps.  Again, I didn't exactly mean to get into the specifics of all that, but there it is-my legitimate excuse for failing at the blog.  I believe I had a similar lapse when I was pregnant with Myra.

17 weeks with Baby 2, a bit bigger than 17 weeks with Myra! (Also, not in Hawaii this time, sad face)

Trevor just started his final year of undergrad (Biology-Biomedical Science/Pre-Dentistry) and is busy, busy, busy studying for the DAT, filling out dental school applications, shadowing, etc., on top of being a student, husband, dad, First Sergeant...  That all leaves us both pretty busy.  We somehow make time for him to play softball/bowl (depending on season), so we agreed we need to make time for me to go do something on my own, too.  Until I come up with a better idea, I will be spending my Sunday mornings at a coffee shop while blogging and/or wasting time. 

I helped run a booth for my babywearing group at a Baby Expo...and Myra got to meet a couple of the Vikings Cheerleaders.


Myra and I survived without Trevor for two and a half weeks in June while he was at Camp Ripley playing GI Joe (normally these 2-3 weeks are no big deal, but early pregnancy made it suuuuuper fun).  I felt like crap and slept every second I could, but survival was the goal.  Trevor was gone for Father's Day, but Myra and I went to my great-aunt and uncle's 50th wedding anniversary party then to my dad's for a cookout. 


Myra and I went to the Minnesota Zoo with Grandma Christy and my nephews.  I was curious if she would turn into a zoo animal herself without a nap, but she found a way to squeeze one in. 


 
Our niece graduated high school this spring and we got to attend her commencement as well as her open house party.  We also attended a few weddings this summer and they ALL had photo booths.  We've got quite the collection of photo booth strips now. 





Thunder of Drums is an annual Drum Corps International competition Trevor and his family attend every year.  It's actually where I met half his family for the very first time many years ago.  This year was Myra's first time and she did very well!


Most of Trevor's softball games were late games this summer, but we did get to watch him play at least once!


Every summer I/we go visit my aunt/uncle/cousins in Wisconsin.  For the last several years, they have lived in the Madison area, but since our last visit they moved to Green Bay.  It was fun to visit their new home and see some new places with them.  We went to Bay Beach Amusement Park and took Myra on a couple rides.  Trevor got to go on the doozies on behalf of our family.  As he was boarding the scrambler he sent me a text, "I am not looking forward to this." haha, what a good sport! 




A week after our return from Green Bay, we went to the North Shore for a long weekend mini vacation.  I spent a week every summer "up north" with my grandparents and cousins, but I haven't been back in about 14 years.  It was fun to see the area again and share that with Trevor.  He lived in Duluth for a while, but never made it up that far (crazy, I know!).  Myra LOVED the rock beach in Grand Marais; she would have been content to just play there the whole trip.









We spent over 30 hours in the car in July and Myra was a total champ.  Zero crying and less than 5 minutes of whining total.  Before we even got out of town on the first trip, she said, "out! out!" and we were pretty nervous about how it would go, but she was fine.  I probably whined more than she did (I was feeling okay-ish, but not wonderful, in July).

In August, my dad and I saw Paul McCartney live at Target Field.  Never in a million years did I think I'd get to see one of The Beatles live, and wow he still sounds amazing!  He played for three hours straight.  I can cross that off my bucket list now.




Myra and Rowdy have become quite the buddies this summer.  She loves to throw the ball for him, go on walks with him, pat him and say, "buh boyyyyyyy (good boy)!"  We recently got a dog park in town and I can't tell who has the most fun there, Myra or Rowdy.  She loves just running around, petting the dogs, throwing the ball, playing in dirt, all of it.  The first time we went, we saw a Great Dane and she kept pointing at him and saying, "horse!"




Our county fair was great this year.  Trevor was gone for it last year and I was dairy-free, so that was kind of a bust.  Myra really liked checking out the animals, people, and tractors.  We briefly went through the tractors the first time we went.  The next morning I told Myra we were going to the fair again and she kept saying what I thought was "doctor."  When we parked at the fair, I realized she had been saying, "tractor!"




Myra has gotten to be so much fun--lots of talking, walking, running, doing.  This child is OBSESSED with bubbles.  She loves playing with real bubbles and will make anything around the house into "bubbles" (a toy drum stick and a cup is pretend bubbles to her).  Grandpa spoils her with his mission to find the best bubbles on the planet and recently bought a pretty fabulous bubble gun for her to use. 


 

Food trials are going well, we have taken a couple breaks due to me feeling like garbage, Myra being sick (she had Hand, Foot, and Mouth last month), that sort of thing.  We usually take a break any time she has something going on that might cause confusing symptoms.  Our last "pass" was corn which has been huge!  Corn syrup is in so many things, plus she can now have Kix, Corn Chex, Fritos, Quinoa/Corn pasta, corn on the cob...  Sometime in the last month, we dropped her morning nap so she just takes one in the afternoon now.  It's not always super long (always at least an hour), but planning things around just one nap has made life much easier.  She doesn't really have a clue what's going on as far as my pregnancy/future big sister, but the other day she did pat my belly and say, "ball!"  At my 12 week appointment, it took the doctor a little bit to find baby's heartbeat, but as soon as we heard it Myra said, "HI!"  But really, I think she's pretty clueless.



That, in a nutshell, was our summer!  We got to spend time with friends (some we hardly see--two even moved back to town!), lots of trips to the waterpark and different parks in town.  Myra could spend all day playing with sand, swinging, and sliding.  She is also a fan of bike rides.  She climbs into the Burley and puts on her helmet. 

I promise to write a little more regularly now--if for no other reason than for us to read in the future.  Writing it publicly means I have no excuse, right?  Also, the Causes posts have been slacking because July was a tough month (not much for awareness stuff that I could find, and no one to write on the topics I could find) and the two I had for August fell through (life happens, it's all good!).  So, hopefully, no more blog crickets, okay? OK!

And well, who doesn't love a random photo of a sleeping toddler?

Monday, June 2, 2014

Causes: Pride Month.

I met Taryn early in college.  Our paths crossed in a couple different ways and we've grown much closer in recent years.  As soon as I decided to implement this series on Causes, I thought of her hoping she would write for me.  As luck would have it, she contacted me about it as soon as she read the Causes intro post.  I'm so glad Taryn approached me about doing this post because I have always thought of her as 100% her own person.  She has always been so genuine and kind, and I believe those are two of the most important traits one can have.  I love her advice, "Open your heart and mind and you might meet some truly amazing people."  (Side note: this is an especially personal topic, so I have been hesitant to approach people about writing on it.  If you have a perspective to share here and are interested in doing so, please contact me as I would love to clutter June with Pride posts.  Or, if you have anything to say about any Cause, I would love to hear more.)


What does June mean to me?  There are so many things that June brings to mind, summer time, beers at The Terrace (Go Badgers!!!), spending time outside new beginnings and sad good byes (graduations). It is also a month that brings PRIDE to life.  Pride in so many things but mostly pride for me!  Who is “me”, I am a daughter, a loving partner, a military girlfriend, and I am gay.  June is National Gay Pride Month.  There are so many terms that go into homosexual, gay, lesbian, bisexual, transgender, queer and the list goes on and on.  For this blog post I am going to use the word gay to encompass them all, this is a word that I am comfortable using but not all people are.  These are my own beliefs and feelings and I don’t write for all people.

As I have been thinking about what to write these past few days, I’ve been thrown back to the fact that I have had it pretty darn easy.  As I was scrolling through Facebook I was drawn to the fact that Storme DeLaverie died (May 30, 2014) at the age of 93.  She fought for so much change, she sat for the Stonewall riots and was considered by some to be the Rosa Parks of LGBT rights.  To think of what she had seen in her 93 years of life, not only for LGBT rights but for mankind as a whole.  I feel so very blessed to benefit from her fight and struggles, I don’t have to fight as hard as she did for me to be the person that I am today. 

                I don’t have to hide behind a front with the person I love because we are gay.  My partner doesn’t have to worry about her career because of who she loves any longer.  Not too long ago we wouldn’t have been able to be together at Military functions because of Don’t Ask Don’t Tell (DADT).  I no longer have to worry what will happen to her Military Career because of who she loves.  I still worry about it, I had many friends that we had to be very careful when we were out and about in college because of DADT, and we had to pretend to be straight because it was guilt by association at times also. This wasn’t something that only they had to worry about we all worried about it together.  There were more than a few tears of joy shed that day as we learned it was repealed.  My friends could be themselves and not have to worry about being discharged for it.  While it didn’t happen overnight I am still amazed at how quickly the military has moved with implementation of the changes.

                I live in a state where marriage equality isn’t a reality.  While there is a lawsuit to change that we also live in a state where if we went to a state that allowed gay marriage to get married that we could be thrown in jail and receive a fine for being married.  While this hasn’t been put on the books for us it is also not off the books either.  What would having the right to marry mean to me? It would be security, acceptance and openness.  I would most likely not have to list my partner on health insurance as my domestic partner and have to pay her whole premium for health insurance while those in an opposite sex marriage can just pay the family rate (yes higher than a single rate but not the whole premium).  Acceptance that we are equal in the eyes of the government, our taxes come out the same way and we spend money the same way, yet in many ways this puts us as a second class citizen.  This would also give me the openness and protection for being me and loving who I love.

                I was one of the very lucky ones, I went to a high school that accepted me when I came out.  I moved onto a college that had an amazing LGBT (Lesbian, Gay, Bisexual, and Transgender) Center where I fit in.  It was by no means perfect, we still had our cases of discrimination and gay bashing but we were lucky in many ways.  We had each other and it was a group that worked together to make it inclusive, accepting and in a lot of ways pretty darn fun.  The University of Minnesota Mankato has come a long way, from the LGBT Center being in a closet in the counseling center (yes you can laugh we all did), to having a wonderful full time staff member who fights for us every day.  I watched and listened to so many stories of people who didn’t have it as easy as me.  Many people who were kicked out of their homes or told to not come back after they did come out.  I watched a lot of people come into themselves in that LGBT Center, I came into myself there also.  We worked as a pretty good team and tried our best to watch out for each other as much as possible.

                I look back and think how lucky I have been, I have friends that accept me and I have a family that accepts me and my partner as one of their own.  Not only does my family accept her but her family accepts me also.  While it wasn’t easy for either of our families to come to terms with it, they did and they love and support us.  I have an amazing extended family but my extended family isn’t just blood, I have an amazing support network of friends who are there for us no matter what.  Family isn’t just blood, it is whomever you pick to be your family. 

                Looking back on things that have happened in the past few years makes me realize how far we have come.  I remember saying to Ali when the Supreme Court of the United States overturned DOMA (Defense of Marriage Act), “Save papers and other items to show Myra, she will never believe the fight we have had!” We have come so far, yet we have so far to go. 
                You may be wondering "how does gay marriage affect me, I’m not gay!"  This affects everyone by being a right of equality to no longer have second class citizens.  To show that we are loving and accepting nation.  You also never know who around you is gay, the stereotypes come from somewhere but we don’t all fit them to a T.  Open your heart and mind and you might meet some truly amazing people! 

Tuesday, May 27, 2014

Causes: Cystic Fibrosis Awareness Month.

A friend of mine, Taryn, came to me saying a relative may be interested in sharing their family's Cystic Fibrosis story as part of my Causes series.  My friend connected me with Tami and she graciously shared Emily's story with me and now with all of you.  I love Emily's awareness and responsibility in managing her Cystic Fibrosis, but I wish it weren't necessary.  I couldn't agree more with Tami's question, "Wouldn’t be wonderful if her children got to live in a world where people are only aware of CF as a disease that used to be?"


May is Cystic Fibrosis awareness month. 

My daughter, Emily, has Cystic Fibrosis. 

Diagnosed just a precious few days after birth, she has never, not been aware of CF.  She does not know life without taking multiple medications every day and spending up to two hours every day wearing a vibrating vest to help clear mucus from her lungs.  She is as aware of CF as she is of her own breathing, her own thoughts, her own being.

Today, as we participated in Great Strides, the Cystic Fibrosis Foundation’s biggest fundraiser at Milwaukee’s lakefront, I caught a glimmer of how deep her connection of self to CF is.  The Emcee of the event said something like “Let’s find a cure for CF” and Emily, in a quiet moment between just the two of us looked up and said, “No.”  I wasn’t surprised. She has a tendency to be Little Miss Contrary.  But I asked, “Wouldn’t you like a world without enzymes and your vest every day?”  “Yes,” she replied, “but without CF, I’m not me!”

At age 8, Emily’s awareness of her disease is changing.  She has what some people might find a surprising amount of knowledge about CF.  She can give a pretty good, age appropriate explanation of why she has CF and her sister doesn’t.  She understands that in order for a person to get CF, they have to have received the “Bad” CF gene from their mom and their dad.  (“Bad” is her word in this case.  I have always been very careful to use “Changed” when talking about the gene mutation to my girls, to try to avoid a negative association.  But, go figure, her brain translated it to “Bad” anyway.) She knows that she got two CF genes and her sister may have gotten just one, or none at all.

Emily can tell you that CF causes her body to make too much mucus.  She doesn’t understand, yet, that it is a defect in the movement of sodium and chloride (salt) through the cells that causes the mucus production.  She does know, however, that mucus is where infections like to grow, she must not only wear her vest to break up the mucus, she also needs to inhale two medications through a nebulizer, and use an inhaler, just like Dad does when his asthma and allergies make it hard for him to breathe.  She also knows that even though she never misses a treatment, infections can still grow.  Catching a common cold can bring on a “pulmonary exacerbation” (words she does not know) and land her in the hospital for a “tune up” (words she does know).  Tune ups are 2-3 week hospital stays during which Emily gets IV antibiotics through a PICC line placed in her arm, and respiratory treatments four times daily.  During her first grade year at school, she did this twice.  Her doctors gave her a special 4-hour pass so that she could go to school to sing in her Christmas program, but, she missed a lot of fun End Of The Year activities during  her next stay in May/June. 

Emily knows that she MUST take her digestive enzymes whenever she eats.  At school this year, her teacher simply provides them each day in a small pill case for Emily to keep in her desk.  Emily is in charge of knowing how many she needs (it varies with fat content of the food, but we stick to a general “2 with snack, 4 with meal” rule, with a few notable exceptions.) The enzymes are a necessary part of meal time because the same salt imbalance that cause too much mucus in the lungs causes too little enzyme production in the pancreas.  Emily can explain that the red and white pills she pops down four at a time do the job that the rest of our bodies do, while we aren’t even aware.  In addition to her enzymes, there is a small buffet of pills that she takes at dinner time.  There’s prevacid to combat reflux (a common malady in people with CF, due to incomplete digestion); a special fat soluable vitamin ABDEK tablet because her body cannot absorb these nutrients from food; an extra vitamin D tablet because her annual blood work always shows a deficiency; a probiotic to keep her intestinal tract healthy because God-forbid we have to live the C.diff nightmare again, and azithromycin on Mondays, Wednesdays and Fridays which she takes as an anti- inflammatory agent.  Emily no longer needs to be asked to take her pills.  She just gets the container out of the pantry and does what she needs to do.  She just told me that she’d like a “pill schedule box” for her birthday so that she can load it up on Sunday with everything she needs for the week instead of opening each individual bottle every day.  Some birthday present!

About 4-6 times a year, this daily regimen is joined by oral antibiotics, which she takes in the morning and evening.  They cannot be taken with some of her other medications.   We start a three week course of antibiotics as soon as we start to hear an increased cough or see other signs of a looming exacerbation.  It is a necessary tool in the fight to stay out of the hospital.  Unfortunately, spending so much time on antibiotics can wreak havoc with the gut.  C. diff, mentioned in the last paragraph is an overgrowth of bad bacteria in the gut, made possible by the killing off (from antibiotic use) of the good bacteria that normally keeps it in check.  C. diff is, well, for us it was hell.  It made her a very, very sick baby for a pretty long time.  We had a hospital stay when she was 15 months to try and get rid of it, but it wasn’t an easy fix.   

There are other things Emily knows about her CF.  Like how her feeding tube, which she got at 18 months and still has in her tummy, helps her get extra calories while she sleeps.   Even with the help of digestive enzymes, a CF patient’s body has a hard time getting the necessary calories from a normal diet, and need to supplement.  Emily is encouraged by her doctors to eat a high fat diet.  She does, but the supplement through the tube has been a God-send.  She is absolutely a normal height and weight, and her body has the energy to run, play, do karate and fight most infections.  She can also explain why, even though she hates them, nightly sinus rinses are a necessity.  She has had several sinus surgeries to clean out mucus and remove nasal polyps, commonly found in CF patients.   

It’s a given that Emily is aware of and knowledgeable about her disease.  She hasn’t been given another choice.  None of us has.  CF is a family thing.  We all take turns sitting with Emily while she shakes in her vest; her big sister sometimes carries enzymes in her purse when we go out; we all take part in fundraising events like Great Strides and Climb for a Cure at the US Bank Building.  I have found that connecting with other CF parents (just the parents, though as patients are forbidden by infection control policies from having close contact with each other) helps me to cope with the stress inherent in any chronic disease, so I am active in a Parent Advisory Board for the CF Clinic at Children’s Hospital, and I volunteer at several events each year.

But, we try and make sure that our lives are not ONLY about CF.  Emily does all the stuff that any other 8 year old girl does.  We’ve even begun to navigate the world of sleepovers…not an easy task when you have to take along a couple large pieces of medical equipment and a host of pills.  She loves to play outside with the neighbors and she absolutely LOVES her karate class.  Karate has captured her heart to the point that she re-named our Great Strides team this year.  We became Emi’s Ninjas, and she designed our team t-shirt!  Most of the time, I feel like we do a good job helping her be a balanced, well rounded kid, not just a kid with CF.  When she expresses worry about someday not having CF, though, I have to wonder.  Have we let her become too aware?  Have we pushed her into seeing herself only as a patient?  Does CF comprise too much of her life?

I hope that in time she will be able to understand that SHE will not cease to exist if we should be so lucky as to someday live in a world where CF does not.  I want her to be able to look back on these years and see how CF has made her who she is becoming.  She is responsible, passionate, determined and empathetic because of CF.  But these qualities are only part of what make her the person that we love so dearly.   

There is no cure for Cystic Fibrosis.  Eventually, all CF patients succumb to the mucus that drowns their lungs and other organs, weakened by the stress of not receiving enough oxygen or nutrients begin to fail.  Currently the median life expectancy is 42 years.  It is our dearest hope that a cure will be found long before Emily reaches that point.  Wouldn’t be wonderful if her children got to live in a world where people are only aware of CF as a disease that used to be?

To donate to the Cystic Fibrosis Foundation visit: www.fightcf.cff.com

To read the other posts in this series, click here.