Sunday, June 6, 2010

Long, Lazy and Hot (weekend, that is)

Well, Tomas' temp never did break. It has hit at least 100 every day so far. I did not, however, end up taking him back in on Friday. I was just sick of going to the Drs', know what I mean? He wasn't miserable AND he has an appt. with the pulmonologist on Monday anyway. He is still running a temp even now, but it is not getting any worse or any better, and the rash is still there. It is so weird. My plan is to pick up the latest X-ray films before the pulm appt. so she can take a look at them, because even though the radiologist said they were all clear, maybe there is something there that can explain all this.
I also went ahead and switched from continuous feeds to bolus feeds on Friday because I felt like throwing one more thing into the mix and living dangerously. He has done great. I've upped it every other feed or so and he is now taking 4 1/2 ounces every 3 hours (it takes about 40 minutes to run in). It is SO NICE not to have him hooked up ALL THE TIME.  It is just him and me and nothing else. I can hold him and move him and lift him and cuddle him and not have to worry about pulling something. It is freedom and I am joyful for it.
We have had such a lazy weekend. Yesterday we cleaned and shopped for groceries and when the day should have been done we decided we should play a little. So at around 6 the girls made snow cones, Mike and I made, ummm, more mature drinks, and we all jumped in the pool. Mike grilled and we ate out by the pool, then the girls and Mike went dirtbike riding in the last bit of sunshine. They were out on a back pasture with a bunch of cows riding around and watching the sunset. Tomas and I strolled down to watch and, oh how I just love the feeling of the summertime evening warm air on my pool-cooled skin. It is second only to driving home from the beach with a slight sunburn, salty skin and the windows down in the car. I do think it was after 10 before all the kids were in bed.
Today was so HOT there was nothing to be done but Mass and swimming. My family isn't the only ones in our neighborhood enjoying our pool. The local insects are using it as a watering hole. We have been watching wasps and butterflies fly in, drink up, and fly away. At first the girls were afraid of the wasps, but they stay far from where the people are and are really only interested in getting the water. My kids still panic if one flies too close but really they have been remarkably unaggressive. The butterflies, on the other hand, are all over us. They must like the salty skin too. They land on our heads, backs, hands, anywhere they can fill their microscopic bellies with some salty sweet water. This has been most welcomed by the girls.
My week kicks off with a bang and stays strong with 2 Dr' appts. and 4 therapy appts so the weekend  could not have come at a better time. Funny how that works, isn't it?


  1. Sounds like a perfect weekend (minus the fever).

  2. Well good for you for going to bolus feeds. I bet that is nice for you. My little guy always gets a fever and then it goes. Hoping that all is good. I do get what you mean about getting tired of going to the doctors and sometimes you know your child best. I am in Canada and is was cold here today. No sun and no picnic or pools. Enjoy

  3. Yippee witht he feeding. What a great feeling that must be to not have him hooked up all the time.

    I agree about it!

  4. OH! I want to be at your house!!!!