I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Sunday, September 20, 2015

Playing the Bull Roarer

 
I stared this blog in March to help support the army of kind people behind the April 2015 miracle event for our family. I wasn't sure what to write then, but ideas came. I didn't know if I wanted to keep writing or if I wanted to be done. But here I am 5 months past the event and I still post. Ideas still come. Sometimes they are lame ideas to write about, but nevertheless I continue to write. The posts aren't always about CF, but since I am the creator of the blog I suppose that it is my freedom to write about old TV shows, disastrous family vacations, or anything else I choose.
 
This post is a CF related post. Here is a little update on Orson's button. He does not stop amazing us at his acceptance of this part of his life. What was foreign and we thought we would never get use to, we are use to. There still are some moments of indecision, like "how much detail to be go into this with people." Not like random people, but like a babysitter, or the mom's of friends who house he may be at. We don't want to say so much about it that they totally freak out and are nervous about it (and we look like weirdo's), but they need to be aware of what to do in case of a button emergency (which hasn't happened but, but we have been assured that inevitably eventually it will).
 
I get a kick out of doing this sort of thing so I made a 14 step JPEG in paint to show what we do at night to successfully complete one can of 375 calories. Its a little different when we do the bolus feed during the day, but close to the routine I outline in the JPEG I created.
 
My favorite part, that I think I have gotten pretty good at is the last step in which I attempt to get as much water out of his extension set tube as possible. I swing it around in a circle really fast and it makes a cool sound. I always think of the movie "Crocodile Dundee," when they show a man playing the "bull roarer." Frank laughs because I clearly get a kick out of making the noise with the tubing, slightly immature I suppose but its a pretty cool sound.
 
The part that I especially wanted to include in this button update is a spectacular tender mercy that has happened each night since April 29, 2015 when we started using the button. Ready for this?The alarm on the pump doesn't wake any of the kids up! Each time the bag is empty or if there is a kink in the line a loud high pitched alarm goes off to alert the user. NEVER has this alarm woken up any of the kids! We have all three kids in the same bedroom right now - all very close to the source of this loud sound. Charles on the top bunk, Orson on the bottom bunk, and Maelee is literally in her bed inches away from the pump and the alarm. It doesn't even bother baby Ruby! It is such a special feeling to know that Heavenly Father cares about our kids not being bothered by this alarm, and that they are all able to sleep right through it. Also how cool is that Orson at 3 years old has been given the ability to swallow 2 horse pills in the middle of the night every night? He does it then crashes right back into his pillow and is asleep again in seconds. Totally amazes me every night. Great blessings. Thankful parents!  
 

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