How are we? Well here goes, I guess I should say, we are making it. We are tired, exhausted, nervous, on edge, and our heart breaks everyday. I hate it with a passion. We don't get sleep from Paislee waking up with really bad reflux. We are nervous all the time that she might fall and hemmorage. We are on edge about the tumor results we will get back. We get our heart broken every morning and every night as my child screams to me, not to do this anymore as she gets her daily injections. It sucks. Her legs are so sore with bruising and knots, she is so nervous getting dressed because she is worried about her clothes touching them and making them hurt worse. A couple of days ago, I just picked up the phone and just cried to my mom that this was the worse. I was fixing to give Paislee her injection in her leg and as she was crying she said, " I will clean my room forever if you don't give me that medicine." That was it, so of course I felt guilty and went and cleaned her room. She doesn't realize that without this, her blood will not be the correct consistency and then will clot the artery before it heals, that without this, she will die. She has no clue, and I don't want her to know that. She shouldn't have to. Very few pediatric patients take this medication.
Paislee also doesn't think her "line" is going to be there forever. She thinks when it heals, it will fall off and then she can go swimming again, oh and that is after it turns pink, she says. We have read her books, but you know she is still four years old. We have two doctors appointments at the end of the week so please keep us in your thoughts and prayers that we will have more answers.
We did have a great moment this week. Yesterday afternoon , she got out of the house and I took her to my brother's. My brother and sister in law are both nurses so I wanted them to see Paislee. They haven't seen her since she has been out of the hospital and no one has really, because we couldn't see anyone for two weeks for fear of sickness and healing. Paislee did okay, she slept on the way there and played with the girls and then slept on the way back. I could tell she was worn down after an hour, but she will eventually get her strength back. The most important part was she had an awesome time and she was able to finally get out of the house. She still can't go back to school or be around large crowds for a long period of time, but we are working our way up to it.
So we are making strides this week and are improving, it will just take time.
Also, today Sawyer is 13 months old. He is such a happy baby. He is in a " I want Mommy stage." He is pulling up and standing holding on to something. He still is not walking yet, but he's getting close. I feel like sometimes I am missing out because we have been so busy with Paislee. As parents, you try to do your best and that's all you can do!
Happy 13 months Sawyer!
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