My Mom has stayed over the last two days to help me reorganize what feels like my entire home in order to house all of the nifty new technology that came home with Parker. As well as the new technology came boxes and boxes of supplies required to allow the new machines to perform their magic.
This is only one of about 14 piles of stuff I had to find new places for:
I don’t function well in clutter. I am of the mind that trying to keep a child like Parker alive requires great organization and schedule. So for every pile of new stuff that followed Parker home I had to find a pile of stuff to get rid of. I’m just funny like that. My Mom and I worked our butts off to accomplish this goal all while attending to Parker’s every two hour meds, three hour bolus feeds, and refusal to be more than 3 centimeters away from me at all times. I still have some more things to finish up, but I can do that as I go.
Has anyone ever heard of Florastor before? This is one of the new miracle drugs that has been added to Parker’s daily routine. It is a probiotic to help with his stomach and digestive issues. $109.00 a month. Yup. And guess who’s insurance won’t touch a dime of it. You mix up the needed amount each morning and you have to use it within 24 hours or else it will go bad and you will have wasted your $3.63 for that day. It can’t be given with any of Parker’s other meds. So now along with his every two hour medication schedule we have to add in the Florastor on the ‘off hours’. Not like I’m busy or anything. Or ever need to go to the bathroom. Or eat lunch. Or scratch my nose.
I read this over at here today. And I voted for this guy. Think it is too late to take my vote back?
And word to the wise: When doing trach cares for a child NEVER stand directly over them. ALWAYS stand to the side of them as you are cleaning their trach and underlying area. Today I discovered just how far Parker could launch a wad of snot from that thing. And of course it was my FACE that was right in the line of fire. Direct hit.
Score one for the little guy.
just know our prayers continue. For a time we had a suction machine at our house. Nothing like a trach, but a tiny taste of what you’re doing. When we moved, I found it and thanked God I hadn’t seen it in years. I just found some tubing for it when I unpacked a box yesterday. I thought of you. and Parker. You’re often on my mind and in my prayers. Hang in there, know He has you, all of you, in the palm of His hand. I am specifically praying for rest for you. I wish I could come and offer you some relief. I DO understand that need. Too well.
I have received those mucous bombs myself, lol! I completely sympathize with clutter anxiety, too. Don’t forget to let me help with the med schedule, k?? BTW were you referring to Shrub? Don’t get me started…
Can you send your mom over to my house to deal with the clutter? Thanks. I’d even put up with some snot.
I’m working on clutter clearing here too. I can’t even imagine what your day must be like. You are in my thoughts and prayers.
yup, I voted for him too. Next it will be Obama. Have you seen his position on NCLB? Hopefully health care follows suit.
hugs, and here’s to no more bombs.
wow! I don’t even know what so say, except wow!
LOL! Yep, they shoot far distances, too!
Good shot Parker! (sorry Tammy, but the little guy needs a cheerleader)
The clutter would be driving me more insane and wearing me down…my brain doesn’t work well without space and air. Hugs and prayers on managing the routine of meds and feedings. I miss our emails.
But I know what you’re doing. 