Saturday, September 1, 2012

Dear Aven,
    It has been challenging for me to sit down and find the time to update the blog.  Once school starts, I am pretty much at a stand still as far as leisurely activities go.  I do not know at the time that you read this if I will still be in the classroom, but currently I am in my 15th  year of teaching general and AP (advanced placement) chemistry courses at Carthage Senior High School.  Carthage is so very dear to me because I have lived her my entire life and I feel very fortunate to teach in a district that I feel provided me with a wonderful education.
      When you first received your diagnosis, there were so many things running through my mind, and yes, a big concern was whether or not I would be able to continue teaching.  As of now,  I am still in the classroom, but I do feel that my days at Carthage may be numbered, simply because I want to spend more time with you and your sisters.  And if the going gets tough for you, I want to be there beside you every step of the way. I have also looked into the best places to live if you have a CF diagnosis....the feelings amongst the CF community is that lower elevations work best as well as places near the ocean due to the salty air.
       You just finished a 14 day anti-biotic because of a throat culture that tested positive for staph. You were a little trooper as always, but you have this past week suffered from blockage of the bowel.  You saw your pediatrician this past Wednesday and you received your four month shots.  I have several friends that know about the dangers of vaccines and I respect their advocacy.  I have read, and read myself, educating myself on preservatives used and which companies manufacture which vaccines.  No matter what the consensus is, we as parents have done what we feel is the best for you.  You are not like your sisters.  The chances of you contracting a bacteria or a virus is incredibly high and once you do the chances of it developing into something worse could be very serious.  We ask  that others respect our decisions to do what we truly feel is the best for your well being.
        The night you received your shots you ran a little bit of a fever, which we were allowed to give you Tylenol to help, but this past Thursday I was up with you from 1:00 am to about 4:45 am holding you as you had severe tummy issues.  You threw up several times, but I was able to get you back in your crib to rest before I had to get ready for school and go teach for a full day. Needless to say...I don't think my students realized I was functioning on only 2 hours of sleep, but I sure could feel it by the end of the day. One day isn't too shabby, but a week averaging between 2 - 4 hours of sleep and then being in a classroom from 7:00 am - 5:00 pm really takes its toll.
          I called your team at Children's Mercy because you have been doing so good with your weight gain, that I knew throwing up was not an option.  I was worried about you getting dehydrated and of course the loss of calories that you endured through out the night.  I actually thought you were having side effects from the vaccines.
         Once I called the physicians and answered a variety of their questions, they told me that it probably wasn't the vaccines.  That you probably had been suffering for a blockage in your bowel and the fact that the milk going in was not moving out, then you just had to expel it the best way you knew how. Not just a common constipation like your sisters might have had, but with you we have to be concerned about the thick mucous in the pancreas and intestinal walls.  So many newborns diagnosed with CF actually have surgery to help remove the blockage caused by the thick mucous, so we have to stay on top of things.  They told me to give you your Albuterol so that the added salt would help thin the mucous and not force feed you.  Give it time and hopefully in a day or two you will be back on track. (there is a lot more that I could probably type about the discussion I had with your team over the phone, but really not into talking about all the different poos you do in a blog :o)  )
           One more thing.... I really wanted to add this to the blog a couple of weeks ago, but am just now finding the time.  It was the evening of August 19, 2012.  You had just been given all of your meds and treatments and were laying in your crib. Tara was already asleep and Arya ( your 7 year old sister) was cuddling with me on the bed.  Out of the blue Arya said, "Mom, I wish I had CF too, so that way when Aven gets older she will not feel like she is all alone.  I could be the one she looks up too."   I know Arya doesn't understand everything that is involved with cystic fibrosis, but she has seen the needles from the blood work up, she has heard you cry from taking all the syringes full of meds., she has watched you squirm and fight as you have chest X-rays and put on a mask for your treatments and knowing all of that still made the comment that she wished she had CF too.

 Your older sister loves you very much and I know she will always be there for you.
                                                                          Much Love Today, Tomorrow, and Always,
                                                                                        Your Mommy - Autumn

I know I posted this picture last time. Both of your sisters are amazing and I think you can see in this picture how proud Arya is of you and how much you love being with her.

You taking your Albuterol though a mask.  As you get older you will have several different medicines that will be dispensed through nebulizers and inhalers.