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.|
Here you are having your chest and side "clapped" with the percussive cups as your sisters look on.