Saturday, August 18, 2012

Dear Aven -
     There are so many things that I want to sit down and post about you, but I find that when you are happy and doing great, I would rather spend the time with you and your sisters instead of on the computer.  Just the other day, I realized what makes you the happiest at three months of age.  Your favorite thing has to be taking your diaper off!  Yes you grin when your family is around and are happy when you see toys and a bottle, but you smile with your eyes and are truly happy when the pampers cometh off!  So, it seems that when we hit a rough patch is when I tend to be a little more motivated to sit down and post.  Like I had mentioned before, this has been very therapeutic for me. 
      I had mentioned in the last post that you had your throat swabbed so that we could determine whether or not there might be bacteria growing.  Your team is very proactive and even though they were so pleased with your weight gain and the fact that you were not exhibiting any symptoms at the time, I did receive a phone call on Tuesday of this week stating that your culture had grown staphylococcus aureus.  A big fancy word for a very common bacteria.  Of course the mother side of me teared up a little, but the scientist in me along with your father's knowledge on staph infections, quickly put things into perspective.  S.aureus is a very common bacteria in which about 20% of the population are long term carriers. It likes to live  on the skin and in the mucous membranes of nasal cavities. This is the bacteria that is responsible for common skin infections like pimples and impetigo, but if not caught and treated, someone with a compromised immune system could develop more severe symptoms leading to pneumonia and meningitis.
      I found myself asking the one question that I have asked so many times thus far...."What do we do now?"  We are treating it aggressively with an antibiotic for the next 14 days 3xs /day  - 3 mL per dosage ( 9ml a day for the next 14 days).  If for some reason a cough develops, then we head to KC.
I have had some great struggles with our pharmacy and was dreading going to pick up the anit-biotic.  You see, according to the pharmacist, you are their only CF patient.  According to their supplier they are not wanting to provide the full script of enzymes at once because of the expense. Instead of getting all the enzymes for one month and being able to run the Live 2 Thrive card ( which can only be used every 30 days) they have told me when I need the enzymes filled, then I need to go in every two days and pick up a bottle at a time until the script is filled. I have gotten a lot of advice as to how to handle the situation and will be making several phone calls over the next few days.
      As far as your anti-biotic goes,  my first thought of course, was when comparing the medicine and dosage with antibiotics your sisters have taken, WOW there is just no comparison.  I remember your sisters taking dosages of  1 ml, twice a day for 7 - 10 days.  My next thought was wondering if we were exposing you to antibiotics too early.  I know we have to treat the bacteria, but I was a little worried that we were starting the path of building up drug resistance bacteria.  MRSA is common among CF patients from what I have read.
        I just found myself smiling when typing. Not because of the words that were just put down, but because of a thought in my head.  I just imagined you as a young lady reading these posts and thinking to yourself, that your mother was so cute trying to explain what was happening.  You see, I know that as you get older, you will have more of an understanding of your disease and you will be the one explaining and teaching all of us so very much.
             
                                                                      Love Today, Tomorrow, and Always,
                                                                                 Your Mother, Autumn



Above:  A great picture I took of you with your oldest sister Arya.  You just light up every time she is near.
Below: Spent some time today trying to figure out the best way to organize and store your meds.  At 3 months of age this is what you are prescribed.....will only increase as you get older.

Monday, August 13, 2012

Dear Aven-
      This has been a very hectic and difficult week for me.  I have been back to work now for two weeks and even though we do not officially start until this Thursday with students, I have been very busy attending/presenting at teacher workshops.  It has been very difficult to return to work and to leave you and your sisters, but the last two weeks have allowed me to gradually get acclimated before things really start moving at full speed.  I have caught myself from time to time; however, breaking out into tears, just like I did today.
       The first time was when I had walked into my classroom after a full day of meetings and found plastic spoons on my desk.  I know that seems silly; your mommy crying over plastic spoons, but I have been on the hunt for them for about a month.   Since we have to give you your enzymes in your applesauce we are constantly trying to sanitize the spoons that we use.  Your daddy and I thought that the little ice-cream sampling spoons would be great especially when we travel and when I finally made it to my classroom, there was a bag full of sampling spoons with a note that said  "For Aven and her Mommy."  I was trying to remember what triggered my second cry, and honestly I think it was a picture of you and your sisters that I had sitting on my desk combined with physical exhaustion from lack of sleep.  After I was able to wipe those tears away, I then had a special delivery which made me start crying again.  Former students of mine, two beautiful, young women, made me a teacher toolbox and as I read the meaning behind the items in the box, I realized how much I will need others during this process.  And yes, I even cried for a fourth time today.  It was when I left the pharmacy.  I had told them a week ago that I was going to need to refill your enzyme script in five days and they reassured me that they would have your enzymes in stock when I arrived today, alas they did not.
       I would like to thank RB, SL, and NR ( like I had mentioned in a previous blog, I really do not know proper blog etiquette so I hope these individuals recognize who they are) for being a wonderful support system and by providing me and my girls with wonderful "pick me ups" over the past two weeks.  It really means a lot to know that you are there.
              As a side note, I do have to say that I am thankful for the insurance that we have as well as a program called Live 2 Thrive which assists in the purchase of your enzymes for the first two years of your life. You see we can not purchase generic brands when it comes to your meds. According to the doctors, generic just doesn't work with CF patients. If we did not have this assistance we would be paying close to $1000.00 a month just for the enzymes
       We did make a trip to Children's Mercy this past Friday and we met with your CF team...the CF doctors, dietitians, and therapists.  Everyone agrees that you are doing WONDERFUL! You are gaining weight accordingly which means we have the right dosage of enzymes and your lungs sound great with a pulse ox (oxygen) of 100%.  We received your very first percussive cups today to aid when "clapping you" to break up the mucous in your lungs.  You were such a trooper.  As the respiratory therapist demonstrated, you just sat there with a content look on your face - not seeming to mind the process one bit!  You had your throat swabbed to see if there is any bacteria 'hiding' out, which you will have done at every visit, and once again we must now wait a few days to hear the results.  Like I had mentioned before, your team is very pro-active.  I hope we receive a call saying that the culture showed no signs of bacteria, but if for some reason the culture grew, then we will drop what we are doing, head back to KC and provide you with the right anti-biotics before anything can develop.  It's this whole waiting thing that I am not used to yet.
       Every time we go meet with your team, your daddy and I feel more and more confident that we can do this.  They are wonderful.  By simply being honest with us and answering all of our questions, we feel better equipped to handle what may come our way.....and believe you mean if you don't know by now.....your daddy and I like to ask lots of questions.
         Your doctor really stressed to us that even though we know you have two mutations of deltaF508, that each individual is truly different.  I try not to dwell on the emotional videos and information that is out there.  I would like to think that I am trying to get all of the emotions out now, so that if you have struggles in the future, I can be strong for you and focus on your needs instead of my own.  When we left the hospital, I just felt like you are going to be that one little girl where we all learn to expect the unexpected.  So many little ones have suffered greatly, but your gaining weight, your lungs sound great and you are just the happiest, best natured little girl in the world! I truly felt happy  leaving this visit.
                                                                        Love Today, Tomorrow and Always,
                                                                                   Your Mother - Autumn



This is the wonderful picture that I have sitting on my desk of you and your sisters.


video

Here you are having your chest and side "clapped" with the percussive cups as your sisters look on.
video
                                         You just kept smiling at the doctors the entire time.
                                                   
   

Wednesday, August 8, 2012

Dear Aven -
     I feel that these early posts are not just for you, but also to allow those following this journey to become informed about cystic fibrosis.  I am all the time running into individuals around town that ask about you and your disease and so many want to know what exactly is involved.  They usually admit that they do not know much about CF and many have asked if it is something that you will simply outgrow.  I do not want to come across that I have all the answers especially this early in the journey, but very few people know about this life altering/chronic disease.
      I have joined so many groups and have 'liked' so many pages dealing with CF.  I try to use good judgement when selecting what it is I view on-line.  Perhaps the best organization to follow is the Cystic Fibrosis Foundation.  This is a nationally recognized non- for profit organization established in 1955.  They are a major  driving force behind finding a cure. Currently they are making enormous strides in finding the best possible treatments for CF patients.  There is currently (2012) a drug on the market called Kalydeco which has extended the life expectancies of some CF patients. This drug has been successful for approximately 4% of the CF community.  Unfortunately it does not target your mutations DDF508.  However, on May 7, 2012 the CF community received wonderful news that Kalydeco in conjunction with VX809 had completed phase 2 trials and were showing great success for patients with the most common form of CF...your form.  I just know that each year you grow and you get stronger, there will be so many things that will be there to assist you on your journey.  Perhaps that is why I have a very special picture frame in my classroom this year.
       Having a chemistry background, I have also been very drawn to studying pathophysiology and genetics.  This has been great since your daddy took so many of these classes in college; he has been able to retrieve his old textbooks and allow me to view them.  As I read them it gives me chills in a way to know that so many years ago when your daddy was reading the chapters on CF and highlighting the words to prepare for a test, he was highlighting the words that would be used to describe your condition. It makes me sad because the emotions are still very raw, but I am learning how to handle things. I am getting stronger each day so that I can be there for you every step of the way.

                                                                               Much Love Today, Tomorrow and Always,
                                                                                              Your Mother -Autumn



I have this in a picture frame in my classroom!

Saturday, August 4, 2012

A Little Piece of Aven

Dear Aven-
    I have been so very proud of you.  We just finished taking your "vitamin bottle"  which includes your milk, Vitamins A, D, E, and K, salt, and your Zantac.  Your oldest sister was on Zantac as well, as so many babies are, but she quickly got off of it in about three months.  You on other hand will probably make the transition from Zantac to Nexium ( or whatever is the most appropriate for you at the time) as you get older.  From what the doctors have told us, since CF patients have to use so many nebulizers and inhalers on a daily basis, they tend to be very prone to acid reflux and so this type of medicine will just become one of those things that you will take every day for the rest of your life.
   You are also doing very well taking your enzymes.  We had tried for a short while doing a "dry run" where we just pour the capsules in your mouth, but you struggled with choking on the 'beads' so we decided to go back to the applesauce since you seemed to do so much better.  I remember the first time I gave them to you at three weeks of age.  It probably took a full 10 mins to get you to consume all of the ZenPep, but now at three months of age you are like an old pro; even taking them with a smile.
     We have been very blessed to have so many people keep us in their thoughts and prayers.  I would love to list individual names, but to be honest, since I will be making this blog public, I do not know the proper etiquette and I always felt bad about including someone in a conversation if they were not informed of it.  So maybe if I just say thank you to HG, JS, and WJ, they will know one day that I am grateful to them for continually providing me support by answering questions, sending me emails and messages and even a little back to school gift basket.
     When I started this blog, the only intention was to provide documentation for you so one day you could look back on our journey together.  I can foresee you being in the hospital for an extended time and maybe these words will give you comfort when needed.  I do not claim in any way shape of form to have all the answers or to even begin to understand this disease in its entirety.  I was very surprised; however, when I went to our local bookstores and looked in the health/disease section to try to find books on cystic fibrosis that there was nothing on the shelf.  To be honest, I was looking for "CF for Dummies". I did find a few books online, but even at that they were very limited.  I do have to tell you a funny story about Arya.  While we were out searching for books and searching the diseases alphabetically, Arya picked up a book and asked "What's this one mom?"  I told her that it was for people who suffer from celiac disease.  She grabbed it and said, "well we definitely need this one for daddy.  Sometimes he just does not know how to act."  It kind of reminds me of the time when we were trying to explain your heritage to your sisters and the fact the you are all part Indian and Arya spoke up because she was getting frustrated at Tara and said, " It's because daddy is 1/4 idiot!" (not Indian)
    I have been in the process of trying to figure out how to make this blog public so that friends may keep up with what we are facing.  I do not know if I will always make every post public ( I know that there will be quite of few things that I will keep for your eyes only) or how long I will keep it opened.  It seems to be therapeutic for me; to put my thoughts down. Hopefully from comments, I may learn and be motivated to keep the blog going.  So much I would like to type, but I hear you crying so I must go.........
                                                                  Much Love Today, Tomorrow and Always,
                                                                                   Your Mother - Autumn

You taking your very first enzymes at 3 weeks of age! (took about 10 mins)
Now look at you! At 3 months you are able to take them with no problems! Enzymes will be something you will have to take everyday for the rest of your life.  You will take them before every meal, snack and/or drink that contain fats.  This is what allows your body to absorb the nutrients you needs from food inorder to thrive.



  

Wednesday, August 1, 2012

A Little Piece of Aven

Dear Aven,
        I am so in love with you.  I look at how excited you get when you see me come into your view and I know that you know who I am.  That is such a wonderful feeling for a parent and so I thank you for making me feel amazing everyday. We've had some good and some bad days as of late.  
        The biggest thing I have noticed is trying to get the right dosage of enzymes with every feeding.  Most of the time we do just great, but there are those moments when you take more than usual from your bottle and the dosage of enzymes seem to be 'off'.  You struggle with the pain in your tummy and all I can do is hold you and cradle you until the pain goes away.  You tense up and you turn your head away from mine, almost as if you do not want me to see you struggle.  The pain goes away and once it does you look at me once again with those beautiful blue eyes and a big smile as to say thank you.
         These past few weeks have been extremely hard.  Your father had a wonderful opportunity to go to Chula Vista in California and work at the Olympic Training facility for two weeks; so exciting, especially as the athletes were getting ready to leave for London. But wouldn't you know it...the first full day he is gone, I break my finger in the car door!  I never realized how much I relied on my little finger especially on my dominant hand.  Even though daddy was gone for awhile, we managed even with a broken finger.
          I am a worrier.  That is what I do; just ask your father.  I worry about your future and that of your sisters.  I want to make sure that I have done everything that I can to make sure that all of my girls live the best quality of life possible.  I have been ashamed that I have not done all that I can for you.  It is hard; but I am going to try harder.  Maybe that is why I did it! I have always wanted to donate my hair so I finally went and had 11 inches cut and I donated to Locks of Love. 
            At his point in my life, I understand that my hair does not make who I am and that it will grow back, but to a young girl who is struggling to find a sense of identity in the crazy, materialistic society maybe my donation will help provide a sense of security as they face struggles that no young person should have to deal with.
          We will begin your chest physiotherapy on August 10.  I am trying to get a schedule established now so that I may do as much as I can for you.  I am dreading the start of school.  As of now it looks like we will be getting up around 4:30 am every morning so that you and I can get your morning meds and treatments taken care of and hopefully that will leave enough time for Arya and I to get ready and get to school.  I teach some rigorous courses and I truly believe in grading everything that I ask my students to complete; so grading along with your evening treatments should put bedtime around midnight or so.  Your daddy mainly works nights, so I know I have to be the one that sees this through.  He will be there for you for sure, but his schedule is always changing., and I have read so much about the consistency of treatments.

           I just don't wont to be weak.  I know that I have to stay strong and I will.  Every mother has that feeling that everything  they do is for their children.  I have always felt that way, but now I will truly live it!
                                                                          Much Love Today, Tomorrow, and Always-
                                                                                        Your Mother,  Autumn
   
Mommy's hair before getting it cut!
And Mommy's hair now!  (This is the shortest I have ever had my hair)