A lot of people have asked me now that we have our good news...
"What's next?"
I wish it was Disneyland, but there are a few other things that we will be doing first.
Odette will still be on one medicine, Septra, for three more months.
This is to protect her until her counts come up to "normal".
Don't want any yucky bug hindering her.
She still has her port in and will for a few more months.
We will schedule the removal of that at our next visit.
For at least a year we will have monthly blood tests.
This is just to make sure that we catch the leukemia if relapse occurs.
(Of course I pray every night that this never happens.)
After a year, we will still be having check-ups until the 5 year in remission mark.
(Told you cancer care lasted a LONG time!)
We will be trying to get more food in her mouth more frequently.
Not so much just around her mouth.
We will also be trying to get her to drink more--32 ounces is our goal.
Or 600 mL's of liquid and a total of 1000 calories.
Right now, I am lucky to get 4-6 ounces down a day.
Any ideas of what she can just lick and get her full calories?
If we can't convince her to eat good like her big sister, and mother,
We will be planning on a G-tube in August.
Not what I want, but Odette is on her own schedule with what she wants to eat.
And last but not least, we will be PLAYING a whole lot more.
Not too much sunshine though--don't want a sunburn!
If you want to join in the PLAYING, just let me know!
We are up for almost anything
As long as you can bring sanitizer and a feeding tube along!!
Didn't I ever get a picture of her front on the 3rd? Well, she did keep running away from me.
ReplyDeleteSteph, I should get you my sisters email address. She had twins born at 27 weeks gestation and had tons of feeding issues with the boys. Because they were so premature they never figured out how to swallow and then developed some severe gag issues. They had NG tubes for over a year and then G tubes for a couple of years. She came up with lots of great things to get calories down the little guys. Both in the tubes and by mouth. If you want her info, just let me know and I'll get it to you. Anyway, even though there's still lots ahead, it will hopefully be a little less stressful for you! I'm so glad it's been good news. She's one of the sweetest blessings. I'm so happy for you and your family.
ReplyDeleteDoes she like Popsicles?
ReplyDeleteI've met Jenn's sister and twins. They are awesome! You guys are more than welcome to come play with us at our house whenever you want! :)
ReplyDelete