The New Normal...

Home health care delivery this morning & the pharmacy/clinic I'm now running ...... Waiting for a home health care nurse to get here to help set up equipment, etc. while Ashlyn lies in bed waiting for nausea meds to kick in (just in case) before she gets up & while my boys are on their way to Hilliard for hopefully a fun day (& we wish we were going, too....our old normal). We've always been a team, the 4 of us,  and I rarely took those times for granted.  Regretting the few that I did take for granted now.  I want them back.  Beyond thankful for the friends who are keeping us going...making meals, giving rides, so many things.....but wanting so badly to just do it myself. To be the mom I've always been. To be there with them, being silly and making them laugh, keeping them in line (or trying to) when needed, teaching them, cooking for them....doing pretty much everything for them.  I want to be THAT mama...

There are certain words and phrases that I don't react well to....one of them being our "new normal".  To go from the girl who is never sick & has always been healthy as a horse and to think of this as being our "normal" is hard to accept.  I need to think if it as temporary....

In those boxes are a feeding pump, stand & supplies, and formula (Ensure) for supplementing Ashlyn's diet.  She has lost weight fast since her diagnosis.....she's at a healthy weight for her age & height, but the rate at which she's losing is not good for her strength and energy or overall health.  We're trying to stop the weight loss so that she will feel better and so that her body will have everything it needs to fight as hard as it can!!  New medicines to stimulate appetite, new medicines combined with old to help control nausea and vomitting...SO many medicines!!  If she feels like eating, she can eat whatever she wants to eat.  If she can't eat, we supplement with the g-tube feedings....one can of Ensure for every meal skipped.  Please pray for control over the nausea/vomiting....and the rest of her side effects, more energy and feeling better in general.  A consistent input of nutrients will help with that! Yay for doctors, nurses and dieticians being back-up for mama.....telling her everything I've ALREADY told her!!!  Funny how she doesn't argue with them.... ;)

Yawn.  It's only the middle of the day and Mama needs a nap.  This new temporary normal is exhausting....