It has been to date a summer filled with changes. Every day when I give Baby Ruby Forever her enzymes without having to get out applesauce to put them in I’m still surprised at her. I kept the applesauce available to use in case we needed it but after her first time of literally swallowing them without water, just swallowing them when I asked her to she hasn’t looked back. It is incredible to watch my kids do things easily that in my mind were going to be so so so difficult. My kids shatter my doubts. I am so excited to see them make progress towards independence with their care. Our situation is unique in that we have three levels of progression with Cystic Fibrosis.
|They shatter my doubts, these guys right here.|
The first level, most advanced level, sits with our oldest brave newly double digit turned daughter. She is a courageous leader for her younger CF siblings, (whether she realizes it or not at this point). Six months ago she had her first complete sinus cleanout surgery plus adenoid removal surgery and since then her healing has brought with it huge benefits to her personal gauge of health. She knows now and can feel when her breathing and upper airways are clear and how to try to fix it when she is not. I’m so proud of her in gaining this skill, it was a challenging one to acquire (upper airway clearance) but she’s getting leaps and bounds better at it than ever before. To see her feel the physical difference in a blocked airway and then cringe to know how hard it is going to be to clear that and then to do the work to do it is really sensational. For instance she was laughing so hard today due to a hilarious friend at church (sorry primary teachers she may have been out of hand today) that she gave herself and amazing upper airway workout which left her feeling blocked. She came home from church and spent an hour fixing it, doing all the tricks of her trade (that she has learned for the past 10 years) to finally get it taken care of and with relief declare “I feel so much better now Mom, I really do.” We work with her to know what each pill does that she takes, and what each vial does that she inhales, and why its important to do all the stacks of extras that she does each day to feel healthy. She sets up her own pill box every week and follows a chart to make sure shes got them all. She is very close to being independent with her care and treatments with us praying, learning, watching, reminding, and encouraging from the sidelines. As she gets older well talk about insurance, where to get the cheapest over the counter supplies, etc – but thankfully we aren’t quite to that level yet (because I’m still figuring it out as well).
Then we have our middle level of CF independence in our only g-tuber plus CF child, our own King of Brave, Orson. He is busy learning all about his g-tube. How to set up his feeds at night, how to hook and unhook himself from his machine, and how to keep his button site protected and safe. Along with having his one night every two weeks or so where he is very angry about having his protruding piece of plastic, he also has a sense of pride about his button. This comes of course from being the only one with one so he enjoys teaching his siblings about it (they love to help him hook and unhook and set it all up as well). He is also aware of what each swallowed and nebbed med does. All of this knowledge is being absorbed without him even being at the milestone of reading on his own yet which I always forget about him not being able to do that because he seems so mature and does so much for himself already in regards to care. He is very careful with his inhalers and I am grateful that he takes the instructions of the respiratory therapists so seriously and is so good at holding his breath and counting between puffs. He has always jumped at the opportunity of doing this on his own and progressing to the next level of self care. He is definitely a younger sibling who is racing to keep up with his older siblings and in this case, CF independence, it’s a really amazing blessing as his parent to see him trying so hard to be responsible in this very crucial part of his life.
Whats been so wild about our now last level of CF independence in this our 2017 summer of change is watching our Baby Ruby Forever come out of the infantile CF stage where we are doing everything for her to watching her take those first steps to independence. She knows where her medicines are and can walk to carry them. She can hold her own neb cup. She enjoys counting to six in Spanish as we count breaths using her chamber. As I said before she is swallowing pills now. She has begun the always memorable journey of using the toilet and that is always a party for a CF human due to that darn pancreatic insufficiency and other CF nuances. My favorite part about the stage she has finally come into with CF care is that we have had more mornings that not this summer where all three kids are treatmenting at the same time! This is a motherhood miracle for me because its such a relief to have Pulmozyme and other important meds done first thing in the morning and not have to find time to work it in during the always changing day time schedule.
This is a blog post I wish I could go back in time and have myself read two years ago as I was holding my third little CF baby in my arms thinking, “how in the world will this ever work?” Two life changing years overflowing with blessings have happened to get us to these three separate levels of CF care.
My faith in my children's ability to handle the disease they were born with increases every day and it gives me a constant reassurance of God’s planning and presence in each of our lives. They are doing it baby! Wahoo!