Monday 23rd

Hello Everyone,

We have done very well these last 3 days, adjusting to our "new normal" and trying to get new routines and phrases in to place. For example, Khloe has decided she likes the word "fatigued"because it sounds fancy and I have had to ask her to qualify it by stating she is sleepy tired or worn out tired. Two more are the help in getting to the bathroom which Kimber has decided she can do by pushing Khloe in her wheelchair and planning bathing around Larry, Jamin and Jonah so they can carry her upstairs (she loves being carried by the men in our family!). I am sure more changes will come to our attention as time goes onbut for now we are approaching each one with brainstorming and a lot of laughter.

Khloe has appts at PCMC tomorrow afternoon and Wednesday morning with her Scleroderma drs and a heart failure specialist and including another echocardiogram. Besides giving everyone an update on how the medicines are doing supporting her heart, we also hope to determine how she does with regular activity one day after another; at home she still is easily "fatigued" whenever she needs to stand up but they need to know if being active with wheelchair support is also difficult.

Last night Khloe asked to be carried upstairs to "see if it looks any different"! Since we moved her bed downstairs there has not been a need to go upstairs and since she could not bathe until today she did not even need access to the bathtub, but none of us realized she missed the kids space/commraderie that exisists with all their rooms together since we have made efforts to be toether downstairs. Anyway, the giggels, guffaws and general silliness that went on with the kids upstairs and Larry and I down was fun to listen to and good for all (you know, "the kids vs parents cuz they would never get it" kind of fun).

For all of you that have used baby monitors and know the fun of over-hearing cute comments you will get a kick out of knowing that we have one set up for Khloe by her bed so she can wake me up for any night time support. You can imagine some of the fun things I am now privvy to hearing during the day if I am in my room, most recently the hushed voices of Kimber, Kindahl and Khloe as they compared how may pieces of bubblegum they were each chewing un-beknownst to mom (or so they thought!).