We managed to get a break from the hot n humid weather for a couple days, but it's now back. It might as well be 40 below as we are cooped up inside anyways. At least we don't have to bundle up to go outside, lol. In a way I'm glad with weather has been unbearable lately because then I don't feel "AS" bad that Danny hasn't been able to go outside. Even if he was well enough he wouldn't be able to go out with the weather that it has been. Danny is still slow n steady on the recovery front. He's still having respiratory issues, but his surgery site is and always has been fantastic. His incisions are all healed up and he didn't have any problems with the actual surgery ~ YAY! It's what the anesthesia does to his system that just kicks his BUTT. We went to CHOW 2 weeks ago just for a post op and they were concerned that he was on the vent and still having breathing issues so we went ahead and had xrays done. SURPRISE! Pneumonia in the right lung, really?? Despite our diligent schedule of respiratory therapies he still got pneumonia. AHHHH! Mind you he was only under for 30-45 minutes :( so doing bigger, longer surgeries just scare the hell out of me. The next one on his scheduled is for January, not only is it for a lengthening but also Danny's baclofen pump will be replaced as the battery life is running out. This will be HUGE on his body. I don't want to think about it as it's months down the road, but it's hard not to wonder what it will be in store for him/us after that surgery seeing he is 4 weeks out post op for JUST a rod lengthening and he is still depending on Puff. SIGH!! I have had many heart to heart conversations the last few weeks with Danny's nurses and Dr's to gain a better quality of life for Danny. The last year has been very difficult on him with all the illnesses he has had and then throwing at least 2 surgeries a year for the rod lengthening.....it's just too much. I've voiced my opinion to Palliative Care, Dr. Kasper, and Ortho so now we all need to sit down and get a better game plan with whats in the best interest of Danny. Man I hate these conversations, as there is always things said that's hard for a mother to hear, but it needs to be done to maintain a better quality of life and so we are ALL on the same page. I suppose I've grown callous in the years to many of the statements/comments towards Danny and his "abilities" to fight and indure, but as I always have said.....My PROMISE to him is and always has been ~ As long as he continues to fight I will continue to fight for him!! As long as HE is still there, I will do EVERYTHING in my power to help him. There is always the FINE line that us families dance between with being selfish and being selfless with our kiddos. I hope n pray I always have the right path in my mind, but it can be so easy to follow the wrong one.
And not this Sassy handsome face :) Their loss as he's one amazing boy that everyone/anyone he meets should be privileged. This lil boy has been through so much and endured so much then any "normal" person and he still fights. He's a HERO in my book!!
Avrianna is having a great time this summer in diving. She managed to FINALLY get the 1.5 down on the board. I knew she could do it!! Way to GO "A"!!
Avrianna hung out last weekend with Aunt Brenda n family on the water and had a blast. Here she is with my step brother Mike riding on the jet ski. Want to guess what she wants now.....LOL.... Go visit Nanny n Aunt Brenda more :)
I've always wanted a convertible mustang, but when I went out to get one......I found out I was pregnant with "A" and got a Mini van instead. So Dan thought it was be nice to Surprise me with it. SO COOL!! It's a 6 speed manual and it's AWESOME!! I'm glad I can still drive it. The weakness in my legs makes it alil harder to drive a stick, but I'll keep driving it till I CAN'T no more.
Look what I caught yesterday in the yard. SO BEAUTIFUL! We watched it for alil while before we let it go.
Well thanks for stopping by the checking on us!! We hope you are having a safe and wonderful summer.
3 comments:
Danny reminds me so much of my sister. She is 19. She has had a trach since she was 9 and a vent since she was 13. When she first went on thr vent it was for night us only. Over time she has become me dependent on it. Now on a good day she might be off 2 hours. It was hard to except her becoming more vent dependent at first but now I realize it improves her quality of life. She could careless whether she is on or off as long as she is in the middle of what's going on. We call her vent "ET" and she has a cough assist we call huff and puff. She is a happy little girl and a fighter like Danny. Her happiness is all that matters to us.
Danny reminds me so much of my sister. She is 19. She has had a trach since she was 9 and a vent since she was 13. When she first went on thr vent it was for night us only. Over time she has become me dependent on it. Now on a good day she might be off 2 hours. It was hard to except her becoming more vent dependent at first but now I realize it improves her quality of life. She could careless whether she is on or off as long as she is in the middle of what's going on. We call her vent "ET" and she has a cough assist we call huff and puff. She is a happy little girl and a fighter like Danny. Her happiness is all that matters to us.
Catching up on old posts! As for the zucchini... if you still need ideas... zucchini brownies! They're yummy and chocolate and you can pretend they're healthy because there's a vegetable in them. It's a win win situation.
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