Conversations with Aly

I think I may change the blog to "Conversations with Aly"...

She is such a mature soul, but still has that childhood innocent thinking that reminds you that she is still a kid.  Yesterday, she and I were on the way to my nephew's son's birthday party (Happy Birthday, again, Jack!).  A song came on the radio and I said, "I like this song, but I don't like what it is about."  Aly asked what I meant and I told her that it sounds like the song is about a girl with a drug problem.  It has such a happy beat to it, but the lyrics are sad.  Aly goes on to say, "Yeah, I'm never going to mess up my life with drugs.  I take enough, but those are there to help me."  Then, "I WAS happy to have them in the hospital because they'd help me forget about what was going on."  Sometimes I am just flabbergasted and left without words to say when I talk with Aly.  This conversation led her back to memories of being in the hospital.  One pain medication she took made her see webs, and she started talking about  how she couldn't remember why she started calling them "web-ies".  She then said she remembered me taking her down to the jacuzzi at the hospital, and she remembered we were laughing at something but she couldn't remember what it was.  I reminded her that we had put a little bubble bath in the jacuzzi and how the tub was pretty much overflowing with bubbles because the jets were so strong!  That was right after her brain surgery.  The first time she felt like getting up to walk.  We pretty much bribed her to walk saying, "they have a jacuzzi tub on this floor, that could be your walk for the day."  She could never get enough "warm" things.  We also talked about "toasty tea".  Aly loved the hot tea and how it made her warm inside.  She talked about how the nurses thought that was "so cute" when she called it toasty tea.  She couldn't figure out why they thought that was so funny and cute!   She also talked about how one night she was really chatty and she felt sorry for Kevin because he was trying to sleep, but she couldn't sleep and just wanted to talk.  She felt sorry for him because he had to get up and go to work the next day...I am just glad that she seems to remember more good times than bad times from being in that dang hospital! or maybe that is what she chooses to talk about.  I don't know!  All I know is I was glad it was a 20 minute drive so she could get all this out!

Anyways, things are going pretty smoothly... knock on wood!  I'm still totally frustrated with doctors, that will be a never ending thing I'm afraid.  At Aly's appointment on 8-31, we were told a person who does yoga with children survivors would call us and give us information about her program.  We were told we'd hear from the ENT who was going to do botox injections to see if they'd help Aly's jaw.  We were also told we should hear, soon, from the psych people who did the neurology test on Aly.  At this point, we have not heard from the yoga instructor, we have not heard from the psych team and it took 2 weeks of phone tag to connect with the ENT doc who told me to call right back for an appointment for the injections.  This was last Tuesday.  They said their first opening was October 22, a month away!  GRRR...I don't get it, never will get it.  When Aly went in for the psych testing, the doctor actually said, "I'm not good at getting the reports out on time.  If you don't hear from me within 6 weeks, call my office."  Really????  Is that my job responsibility, to be your secretary?  I'm beginning to think that is my new role, following up on doctors.  If only I got paid to do so!  I'd be making good money by now!  The worst feeling is that I am feeling complacent, like it is ok to wait this long for results.  It  seems to have become the norm in today's society, so do I just let it be that way or do I hound people like there is no tomorrow?  It is just SOOO frustrating.