For almost two years I thought we’d lost him. He never talked to us, he didn’t care about anything but the (now long gone from his life) girlfriend. Back then he wanted to be a doctor. Now that dream has been put aside for another, but that’s another post for another time. Because two days ago this kid came to me with a question. He asked if there was a way to raise money, because he wanted to do something with his spring break. He didn’t want to go on vacation with his friends, or go party somewhere. He wants to volunteer at Give Kids the World Village, the magical, wondrous place that provides a second home to kids receiving wishes for Disney World. Together we are working on finding a way to make this happen. I don’t know where this kid came from, or rather how we found him again. However, it seems my thoughtful, generous boy has returned into our lives. I can’t tell you how many times I heard “One day it’ll just click and his head will be screwed on right again.” I honestly never believed it would happen, but it seems to have come true. So welcome home, son. I hope we can find a way to send you away (for spring break). Read more »
Six months ago we were hit with a disheartening blow to our years-long CF journey. The pulmonary doctor we’ve had from the very start of our journey was transferring all her patients on to new doctors. With plans to retire very soon, it was time to transfer her last six patients to their new forever homes. My two kids included. So, at our last appointment we met our new (highly recommended by Dr. A) doc, Dr. M. Change isn’t easy. We were suddenly reporting on a Tuesday instead of a Wednesday. Dr. M, while perfectly nice, was making all of these suggestions and recommendations and this and that and I was honestly panicked. Mostly because he wanted to do a complete, total, sweep of the CFTR gene on K. In my blind, “this is so different, I don’t know, so I’ll smile and nod” moment I did just that. I smiled and nodded. Yesterday we returned for the next appointment and this time, not so new, it was a little different. We spent some time with Dr. M, and the respiratory therapist and got a better feel for what’s going on. And so we set new plans, a new direction. My biggest concern with the genetic tests was addressed – would we lose the CF diagnosis, and therefor the vital insurance we desperately need for treatment? No. Because of positive sweat tests and concurrent symptoms, their diagnosis of CF will remain no matter the results of the full genetic sweep (which is, blessedly, being covered by the fantastic CFF not just for Kennedy, but for Denver as well). Then we moved onto Kennedy’s current status. Though her weight is at an excellent place right now for a change, her functions are not. She has maintained for years just fine, but Dr. M wants to do more than maintain. He wants to attack…and so… With her functions the way they are, there is definitely some sort of obstruction, and he wants to find it. There will be a chest CT. There will also be another functions test for before and after albuterol to see if there is any asthma-like influences, and she’s being put on a nasal steroid for her constant sniffles. We’re fighting insurance for a new vest system (with the doctor’s help) since hers is old and been beat up by destructive toddlers. She will be on an increased vest rotation and possibly new meds (hypertonic saline) which will require new equipment. Basically we are now fighting to push forward and move beyond basic maintaining and into full blown attack mode. It’s terrifying and exciting. I don’t know what’s happening in the future, except increased appointments and testing for the little one, but I do know that something is happening. Change is scary, but this is proof it isn’t always bad. And that first impressions aren’t everything. Read more »
by Sarah CassMulti-published author. Mom of 3 special needs kids. Wife to 1 good man.
Redefining Perfect every day.
The past four months have been chaotic and filled with a secretive sort of excitement. Denver has us keeping a rather large secret from the girls. We are returning to Disney this fall! I have been scrambling for dining reservations, suitcases, and other necessities that I have to sneak into the house and hide from the girls. Because they do NOT know. Part of Denver’s wish at Make A Wish was to keep this whole thing a big, fat, humongous secret from his two little sisters. So we are whispers, sneaking, and super secret planning and count-downing. Texting ideas instead of saying them out loud. Oh, we’ve nearly been caught several times…but any time the girls hear Disney or we discuss anything in front of them, it’s “in 2021”. (For the record, we are planning a trip in 2021 that will be larger in scale and involve good friends along for the ride) 2021 is a great cover story when we get caught. But we are going back…and the teen and I are making a serious effort for real planning. We have secured all the reservations we REALLY wanted (getting into the parks early! Yay!). We’ve scoured maps and discussed what was missed last year and will not be missed again. We’ve supplied ourselves with a bunch of pins for trading (and keeping!!). We’ve watched and re-watched all the Disney shows to be had (thank you, Destination America) until our DVR broke. In 20 days from now, a limo will arrive bright and early while the girls are still in bed. We will have everything packed and ready to go and we’ll burst into the girls room yelling that they’re late for school and rush them outside to the waiting limo!! The excitement is palpable. The countdown is a way to get us through the rough days. And there have been a lot of them these days. Thank goodness for the mouse. Read more »