The Bitter Sweet

Today was a bitter sweet day for Alexis, in more ways than one. She did make it through testing at school, and she actually said it wasn't as bad as she expected. Hopefully that will help take away some of the nerves she has for the rest of the week. When I picked her up for her doctor's appointment she said she was starting to feel crumby but she knew I was going to be there soon so she just dealt with it until I got there.

We spent a lot of time with her doctor today. He was concerned with how she's been feeling. He wasn't expecting Alexis to be feeling much better, but he also wasn't expecting her to be feeling worse. He said it could be the medicine she's on doing this but there is no way to be sure until she is no longer taking it. So our options are to have her stop taking it now or to finish out the last 2 weeks of treatment. He strongly recommends trying to finish the full 4 weeks but if she can make it to at least 3 weeks it will be very beneficial. We are hoping and praying she can get through all 4 weeks though.

One of the bigger concerns Dr S has is with the stomach pains Alexis is experiencing. The antibiotics she is on can cause problems with the liver. When he was examining her today every time he got near this one spot in her stomach she would cringe and be in so much pain. Every week she has been getting blood work done and everything is coming out okay with her liver. He is going to keep an extra close eye on it now though.

He did a series of blood pressure tests on Alexis also. He took it while she was laying down, then sitting up and lastly while she was standing. Her blood pressure went up more than it should have when she went from laying down to sitting up. I'm not going to lie - I don't know exactly what this means but I know he is going to do this test again next week and also keep monitoring it. 

Dr S also wasn't very happy that Lex is getting frequent migraines that are worse than before she started her treatment. He is going to talk to her neurologist about this but he did a couple things himself too. One of the things he did was shine a light into Lex's eyes. After he did that I could tell something was wrong with her. I kept asking her if she was okay and what was wrong - she kept saying "nothing". Dr S even asked her at one point if she was okay and she said yes. The second we walked out of his office she told me her head was killing her. I knew something was wrong. Why wouldn't she just say it when she was in there? It makes me so crazy that she is afraid of telling people when she is in pain.

About a week ago I was doing Alexis' hair and I found 2 red rings on her head - about the size of a pea. I showed him them and he was a little baffled as to what they were too. He said he is going to document it and that it may end up helping us in the future. I would have liked to be able to know exactly what it is but at least it was nothing I needed to be too concerned about.

Dr S told us that Alexis' MRI came back good. That brings for a little more of that bitter sweet feeling. I'm soooo glad it was okay, but this is going to make things a little more difficult with our insurance company. I will get into that more in the future though. I was hoping the MRI would give us a clear insight to Alexis' neurological symptoms.

It may seem like we didn't get much out of the doctor's appointment but we weren't expecting to. We just wanted to check up on Alexis' progression and see where she is at. She has another appointment next Monday and Dr S will do the same thing. Eventually he will be able to piece this all together and see what kind of progress Lex is making while on these antibiotics.



Homework. Such a tough time of our day. If you read "Alexis' Story" then you know that school is something Alexis always excelled in. School came naturally to her. She has always been good at it and always really enjoyed it. That is not the case anymore though. I dread when Alexis sits down at the table to do her homework. Not only does it take her so long to complete, she gets so stressed out that it makes her physically sick. Today was no different. She sat down at the dining room table to do her homework. She was so excited that she only had one piece of homework tonight (it's usually a lot more than that). Tonight was science. She had to read a paper, answer a few multiple choice questions and one open ended discussion question. Sounds simple enough, right? Not for Alexis. She has such a hard time understanding anything she reads now-a-days. She can read something over and over for an hour and still have no idea what she just read. All the answers to her questions were very clearly stated on the page she had to read, but she just didn't get it. She asked for help, and she was even able to tell me the sentence that the answer was in, but she had no idea how to come up with the answer. She started working on the discussion question. At this point I walked away. Before I knew it Scottie was yelling at her to stop pulling her hair out of her head. I knew she needed help again - but she hates asking. I went back in there and she was practically in tears. She was so lost. I helped her, explaining it as best as I could without giving her the answer and she just got so frustrated with me. She kept telling me she doesn't understand and that how I am explaining it makes no sense to her. She started to sweat and within minutes she was dizzy and nauseous. She had to go lay down and take a break for a little while. She was able to calm down, eat dinner then we went back to the homework. This time I explained everything exactly the same as I was early, and she got it.

Something that would have seemed so simple just a couple months ago is almost impossible for her now. A little science paper that should have taken minutes, took her over an hour to complete. Tonight was one of the better nights too. Last week Scottie found her banging her head on the table. She gets so stressed and so frustrated with herself that she can't handle it. It breaks my heart into a million pieces. I almost lost it right in front of her tonight. Luckily, I had somewhere to go right after all this happened and it was a 30 minute drive. When I was in the car by myself I just lost it. I am so angry and so frustrated. I can't stand seeing what she is going through. I would do anything to take all of this away from her. She is too innocent and too sweet to be so stressed out.

Tonight I talked to my mom about Alexis' homework struggle. She brought to my attention that if homework is this stressful to Alexis, then work in school may be doing the exact same thing. Which may be why Lex can't seem to make it through a full school day. Homework is such a stressful time for Alexis - I can't stand thinking that she may be experiencing that for hours straight during the school day. I need to do something. I need to call her teacher tomorrow. I need to make sure she isn't getting this stressed out all day long. My heart is broken.

Tomorrow morning Alexis' nurse will be coming to change the dressing on her PICC line and do her blood work. Every time she does this Alexis gets very sick. I'm praying she doesn't tomorrow because she has testing and I would hate for her to miss it. Extra prayers are needed tonight, please!