This has definitely taken it's toll on all of us. I try not to think about how much all of this affects her brothers. I want them to see that it's all OK and that mama and daddy are taking care of everything. I don't want them to be sad or to worry about her. I know I am doing them a disservice by wanting their lives to be all sunshine and roses. This is where they get to know the God I know...when things are hard and it's tough and it hurts. This is where we learn to trust and to lean into what we know. We say we believe in Him, this is where we believe Him.
We had a wonderful weekend. We got SK out some to enjoy to the beautiful weather. She has always loved being outside and that part has not changed. It's harder to get her out, but so worth it to see the sunshine on her face and that wonderful fall breeze in her hair. It makes me smile because it makes her smile.
OK, there was a bit of comic relief concerning Grey's essay on "My worst day." He wrote about more than one thing. Yes, he wrote that his worst day was when his sister went on oxygen, but he also wrote (and I am hoping it was in a completely different story) that his worst day was when his brother "sat on my head and passed gas after eating mexican food." Actually that wasn't a direct quote because y'all all know that he didn't say "passed gas." And yes he shared it all with the class...I'm so proud.
3 comments:
I just wanted to share some words of encouragement after reading your last few posts. Our daughter, Olivia, is 13 and after cord trauma at birth suffered severe brain damage. She has always been completely dependant, non-verbal, ect., but in 2011 had several bouts of aspiration pneumonia which left her lungs severely damaged. She was on 24 hour oxygen, breathing treatments, suction, bi-pap for over 1 year. We thought many times that we would never see our "normal" Olivia again. Today, it has been exactly one year since her last hospital stay, she no longer requires ANY oxygen and sleeps most nights without her bi-pap. She is smiling and happy and we feel like God has given us a second lifetime with Olivia. We still realize that her life will most likely be short, but for now we have our girl back. I just want you to know that it IS possible for those little lungs to heal and I hope and pray it will happen for your sweet SK!
Hi! I'm sorry to read about your recent difficulties :( Just wondered if you were getting nursing now? We have night nursing so Ky still sleeps in her room and we don't have to move the sat monitor/oxygen etc from room to room. Kylee's been on oxygen for 7 years and yes it's a total pain but you get used to it!! We still go out as much as possible etc and I totally feel you but you can do this!! :) We keep the concentrator in the garage and have a zillion feet of tubing all over the place! I'm glad you got a POC - our ins didn't pay for that so we did tanks and just finally bought one last year. I'll be thinking of you - I know how much it stinks to "add on" even more :(
Girls, thank you so much for the encouragement. I am smiling just reading both of your messages. I would have never thought it would be possible for SK to maybe one day come off the O2. How wonderful for Olivia and for your family...thank you so much for sharing that.
Adriane, we do not receive night nursing. We get 12 nursing hours per week, which we are very grateful for. I have wondered how some of you I know receive night nursing, is it through Medicaid? Our church paid for our POC and yes it is going to be life changing. We are learning to that we can still get out and do and go, we're just learning a different was to do that.
Thanks to both of you so much y'all have made me smile. Amye
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