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.



video
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.

          

3 comments:

  1. That last paragraph made me tear up. What a precious big sister aven has to look up to! I keep aven in my daily prayers, I used to babysitt for a baby with cf and while I wasn't in it everyday like you are, i remember the many different meds and tappin her back after every bottle, the capsules in the applesauce ect.....aven is lucky to have a family that loves her so much! She's a gorgeous baby girl!

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  2. Hi Aven!

    This is Lily again I was just thinking of you the other day… you see your little brother Noa was a little sick He had some fever and I was worried sick about him. I could not sleep and I kept such a close eye on him… Despite the fact that he was not feeling well, he smiled at me. Like he was telling me that it was ok… I love you and I will be fine. He smiled often and when I saw his smile, it made me calm down. It reminded me of you and your mom. Although my little situation is just 1 millionth of what your family is going through, I wanted to thank you for smiling! You see sweetie, your smiling is what brings relief, joy and a feeling of normalcy. You have no idea how strong and self-less you are… despite the way that you are feeling you always have the strength to smile, it is the way that you communicate.

    I was reading your mommy’s post today and as always I teared up. I was reading about what your mommy is planning to do… which could mean giving up on teaching or moving. It is so amazing because when I was younger I always thought that love was that warm and fuzzy feeling that you get when you are cuddling, when you are sharing a smile, or when you are sharing a kiss with your sisters! But as I get older I realize that love is about sacrifice. As mothers we would walk through fires for our babies, lift up cars, fight (even if we are not known for fighting) or jump into raging rivers just to know that our babies are safe and well. We will not sleep, we will weep in silence and we will change our whole life… Please do not ever feel bad for this… because you did not ask us to do this… we do this because we love our children and this is honestly the least that we can do… and even then it does not do justice to the immensity of this feeling. I remember watching Brother Bear before I had babies and of course I understood the message and the story… However, I honestly did not know if I could give up my life and turn into a bear. I watched this movie again after I had my babies and I TOTALLY UNDERSTOOD!!! Your mom would become a bear, a spirit, the wind if that brought her closer to you and your sister (the same way that I would if it would bring me closer to my boys!).

    So Aven, if there is ever a time that you are feeling sad or down… revert to this post. No matter what you are going through, you are never, ever alone! Your family is walking side by side with you! They might never really know what you are going through… but they are living it with you. You have such an amazing family, so selfless… There is a reason why you belong in this family and that is because you share the same spirit, the same heart and the same smile! I have such great respect, love and admiration for your family!

    Your friends from afar!
    Lily, Noa, Milo and Teemu (that is Noa and Milo’s daddy =D)



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  3. Hi, I saw your post on the cysticfibrosis.com facebook page. Your daughter is beautiful. I'm 19 and have Cystic Fibrosis; if you ever have any questions, feel free to add me on Facebook; my name is Mariah Hanley. I would love to answer any questions you have. It seems like you're doing a wonderful job, and Aven is very lucky to have such a caring mom that's so on top of everything! Really, though, if you ever have any questions or just want some reassurance, message me. I'd love to talk to you. I'm 19 and was hospitalized for the first time ever last October. My FEV1 lung function is still in the mid to high 90s depending on the month!

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