Tuesday, April 1st

Khloe said I should start this post with an April Fool's joke about her...something like "Guess what everyone? Khloe's hair has turned bright red because of all the medicines...now she looks like me!"...but then we knew you were all way too savvy to fall for that! :-)

So how about some Lewis Family humor instead? It may be a little off kilter, but those of you who know our family will forgive us! Khloe was able to go to mutual tonight for the first time, though she is still needing to use the wheelchair as being up and walking more than 5 minutes makes her blood pressure and heart rate go up. She also needs to have her travel oxygen with her in case she needs some for recovery after exertion and at dinner tonight Larry and I were reviewing with the kids how to care for the container. You see, this past Sunday Jamin had helped load the wheelchair and her oxygen in the suburban and had forgotten to secure the backpack/travel container and in the 1 mile drive to church it had fallen over (a big worry with compressed oxygen), but was fine. So after discussing what could have happened we got on a roll laughing about how fast the suburban could get to the church if the oxygen fell over and exploded...it would have to be pointed in the right direction...if it went straight up in the sky what were the odds it would come down in the parking lot...would everyone know the Lewis kids had arrived by the bright ball of flame behind them...etc, etc. But to reassure all of you, we did remind the kids of the correct way to handle the oxygen before they left and told them to make sure no one at church kicked the cannister...or pretended it was a football...or played "keep away" (because they might get blown away)...etc, etc!

Now to be serious (which is hard because I am still chuckling), Khloe is doing well, though she is continuing to feel some frustrations with her body being so tired all the time. As I mentioned before, she is up to standing and walking for about 5 minutes, but we notice that just that much activity causes her blood pressure to rise about 7-10 points. We were asked to get a blood pressure cuff so we could take her pressure randomly, keeping a record of activties and the effects on her system; we got a digital one so Khloe can do this herself. She is supposed to stay under 120 and while at rest she averages 97/60, but any activity raises it up to around 115/70 and some times has been in the 123 range. If she goes to 130 and over we have to call the cardiolgy team for decisions. This past Sunday we all went to church together for the first time in March and though she really enjoyed being there, she did start to feel tired at the end of sacrament meeting and thought of going home, but pushed through till after Young Women's. Her pressures and heart rate were stable after the three hours, but she was exhausted and was in bed asleep by shortly after 7:oopm and did not wake until after 9 Monday morning. Since then she has napped every day of her own volition and seems to do better at a regular daytime schedule. She is able to go up and down the stairs as long as she sits on the bench on the landing for at least one minute, but she and I really have to plan ahead for any thing she wants to do as the extra time needed to go up the stairs, or to fix her hair and change clothes, or to get in the car to go somewhere has to always be figured in. In spite of all this, she is happy and her spirits are high. She has her "home hospital" teacher from school coming tomorrow for the first time and is looking forward to having some school work to occupy her time ( yes fellow parents, read that part to your children!).

I want to thank you all for the comments and messages you have left on the blog or sent to my email. I read them to Khloe and it makes her feel much more connected to everyone. A big "thank you" to Kimberlie's teacher Miss Thomas who understood that when Kimber came to school last week with her arm wrapped up in bandages, that though she was pretending to have an injury, it was her way of dealing with some of what she has seen Khloe having to do and having her teacher validate that made her ( and I) feel supported and cared for.