Being home, taking it easy has been really hard for our family. We are so active, and so busy typically. We' ve been doing a lot of crafts, playing games , and trying to change our scenery between indoors and outdoors as much as we can. Macy is doing a good job at limiting herself, however she had made comments about not being able to do anything.
We had a very rough day yesterday. Poor Macy woke up with awful stomach pains that she stated were at a 10. She wouldn't eat breakfast, and rested on the couch in a ball. She kept feeling like she had to go to the bathroom, but nothing would come out. I was honestly very concerned since we haven't had those pains since Chicago. I thought we would possibly need to take her to be seen by someone. I first put a call into Dr. Superina's office, and then headed to CVS to get seem Miralax. I was thinking it might be constipation. When the office returned my call, they gave me the okay for the Miralax. It can interfere with Coumadin if used regularly, but one dose shouldn't hurt. Our NP said that we don't want to discount pains like this, especially with Macy for a few main reasons. Macy had 2 major abdomen surgeries , and we aren't that far out, and Macy has a very high pain tolerance, so it must really hurt for her to complain. She said if she develops a fever, worsening pains that do not go away, blood in her stools, or vomitting, that she needs to be seen. She stated again how amazed the entire office is with Macy. I have always known how amazing she is, but it is so great to hear it from others as well.
Through all for this, Macy keeps trying to be the tough kid. She wouldn't be who she is, or where she is if she didn't have that mentality. However, we have had to have serious discussions about the fact that it is okay to have pain, and tell us she has pain. Even through pain, she will often tell us that she is fine. Yesterday morning, the pain was so severe the couldn't hide it though. As the day went on, she tried to tell me a few times that she was fine, and I could clearly see that she wasn't. I explained to her that she doesn't always have to be tough, she doesn't have to always smile through the pain....it's okay to admit that something hurts! I need to know when something hurts! Bless her brave, sweet heart!
So happily, the Miralax seemed to work. We were even able to take the girls out to dinner. When we came home Jeremy had to put the sprinklers out to water the lawn, and the girls asked if they could play in them. I said they could "walk" through them, but no running. They out their swimsuits on, and McKenna had a few good runs through the sprinkler, but Macy decided against it, and just sat fin the bench wrapped in her towel. It broke my heart a little, but I am glad she didn't try to push herself into doing it.
In other happy news, Macy is back up to her pre-surgery weight. She is still super tiny, so I am giving her nutritional shakes 3 times a day still. We also started her back on her growth hormone injections. We are praying for some height and weight gain over the summer! Also please continue to pray for our friends who still have their little guy in the ICU. Fortunately he was extubated yesterday, and it doing great! Prayers for continued progress!
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