Right now I'm sitting at my desk watching my big boy do his 30th TOBI nebulizer while he watching Sesame Street for the billionth time. He's been on TOBI for 2 weeks so far. We have 10 more weeks to go. It seems like a long time but we'll get through it. He has about 140 more TOBI treatments before we're finished in June. All I can say is my kid is fighter. He's strong willed which I think is a great trait to have when you are looking at a life where you're going to need to fight something as horrible as CF.
He's such a good little boy! For the most part he doesn't complain about the treatments. Every once and a while we'll find him running away from the couch, where we do treatments, but most of the time he willingly gets up on the couch for his treatments. I'm so proud of him.
We finished the oral antibiotic Cipro last night. We were happy because about halfway through he started having a horrible diaper rash. It was nothing Desitin couldn't cure :)
We are hanging in there as a family. It's been a struggle and I know it will continue to be a struggle but we've all come together. I hope that my friends and family are more aware of what Cystic Fibrosis is and how serious it can be. It's been scary, but we are optimistic and can't wait for the day that we know that we've kicked Pseudomonas to the curb!
On that day Ethan will get almost an hour and half of his day back. He'll have a little freedom from nebulizers and extra vest treatments. I can't wait! June here we come.
Thank you for your prayers and words of encouragement. They help more than you could know.
I've created this blog so that my friends and family can see what's going on in the life of our family.
Yes, Ethan definitely is a fighter and so are his parents! You and Ken have been a strong anchor for Ethan and have stepped up to the plate every time to ensure that Ethan is given the best of care so that he is healthy and strong. I know there will be highs and lows throughout the years to come and I am confident that you and Ken will get through anything that comes your way. Just look at what you have accomplished so far, how strong you have been even when it seems like endless treatments you press on and get it done. Ethan certainly is a trooper and I too am proud of how well he is doing with the treatments. I know he has his moments when he doesn't want to do them but he always comes around and gets back on the couch to finish the treatments. He is a joy and I am so lucky to be his grammy!
ReplyDeleteSometimes I'm amazed by Ethan's compliance regarding these treatments. After all, in many ways he's pushing his limits like all 2 year olds and it must be difficult for him to resist rebellion. God has answered our prayers by enabling Ethan to be calm and accepting of this right now. I know it may seem strange but I'm even thankful for disordered schedules and diaper rash since they're caused by the treatments that will keep him well. God is good!
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