Life has been busy lately. Coming home from the hospital at 5am on Saturday, we had plans that night after church to go out with some friends to celebrate Lauryn’s birthday with ice cream. Not sure whether to cancel or not, we decided to wait and see how Naomi was doing that day. Doing well, she went to Mass, and then we all went for ice cream. It was a fun time. 4 adults and 11 children.
Monday, I called the dr’s office about her cultures. I declined to take Naomi in for an office visit because she was not running a fever and seemed very normal. The dr was fine with that and since she never called me back, Naomi must have had negative cultures.
Wednesday is our fun day around here. I am off and we try to enjoy ourselves. Since we took so much time off school while Naomi was hospitalized, we are homeschooling through the summer. But Wednesdays are the one day that we totally skip classes and do whatever we like. We started the day trying to set up a small pool in the backyard. Not having any clue how to use the air compressor, I decided to skip that and we went to the local activity pool. I caked Naomi’s face with sunscreen and made her wear a long sleeve shirt over her swimming suit. Her skin is super sensitive from her transplant and if she gets sunburn, her chances of graft-versus-host disease increase. That is enough of a threat to keep us in the house all summer….. except that it has been over 100 degrees each day and we have been craving a beach, the waves, or ANY water. So, we did it. I am VERY happy to report that she did not get any sunburn whatsoever! We were there for a little over two hours. I did require regular “sun breaks” in the shade. The children had a blast and Naomi picked right up where she left off last year, swimming and going down the slide.
Then, on Wednesday evening, she had her first full-length gymnastics class. In a non-competitive developmental class, they are reteaching her terminology and helping her regain strength and stamina. She did extremely well and said that she felt like class was only 15 minutes (it was 75) and that she could have kept going. So, I decided she could handle the second day each week and registered her for the second of that series of classes.
Her diet has been great and increasing. She is doing better with liquid intake this week. I have her drinking Shaklee Hydration drinks, sole water, and then iced water with lemon and stevia. Our goal is 5 of her canteens each day. That is 60 ounces. The rule of thumb is half your body weight in ounces per day. That would be 25 ounces per day for her, if she were not on meds. I have her doing more than twice that due to her meds and the risks they pose to her liver and kidneys.
Having had an increase in cyclosporine last week, we are having quite a bit more attitude to go along with that increase. It is very difficult to explain to the other children how we have to be patient with her because of her meds, but yet tell her that we expect better behavior and more respect even though her meds may make her feel like being mean. It is such a fine line to walk being the parent of a child on meds that makes them disrespectful, selfish, and aggressive. Instead of counting up from the transplant, I think it is almost time to start counting down until she can wean off cyclosporine! I hate how that med makes her act! As long as her liver and kidneys continue doing well, that will happen at the 1 year mark, January 15, 2015. That is 203 days away.