Well, we've made yet another "successful" trip to the Riley's Children's Hospital. This successful trip determined that Tru could possible have fluid on her ear drum, which would explain her balance being off, possible headaches, and her all around crappy attitude some of the time. So. . .yet again. I am waiting for another phone call to schedule an appointment with an ENT doctor, to check for fluid & if there is no fluid, get some drops to help clear her ear wax better. (She has such tiny little ear canals.) So we wait to make another trip.
Can you find Tru and her new friend? They're in there somewhere.
Other than that, Tru finally got to meet some kids with the same deletion syndrome as her. She played with them a little, but they weren't as mobile as her, yet. . .they are getting there though., so she mostly played outside with older children. I was so ecstatic to finally get to meet parents that have dealt with the same things as me. I simply couldn't wait for the conference in 2009, so a few of us from the support group, who live close together, got together. IT WAS AWESOME!!!!! Everyone needs a few people who they can relate to. I was told that Tru was an inspiration for one mother, whose son was just starting to walk. . .(could of fooled me cause he was cruising all over and being very adventurous going from one piece of furniture to another. ) It really meant a lot to hear those words. It was like finally being acknowledge for all the hard work and struggles Tru has done and accomplished. I was inspired by another kids' and their communication skills, so verbal and using sooo many signs. (I am so very thankful for meeting such awesome women too.)
Well, let's just make this one long drawn out post to wrap every thing up for the friends & family. Who knows the next time I'll get a chance to post. I'm busy from the time I get up, right into my sleep. (Tre's still not sleeping through the night, uh. . .)
I had my first parent teacher conference & have nothing but positive wonderful things to say about that place. I'm dreading the coming summer when she won't be able to attend & even worse, next year if she doesn't qualify to even go there. AGH.... The teachers are great though & I'm throughly convince that Tru loves her teacher, just as much as me. . .not as much as daddy or either set of her grandparents, but as much as me. Which is wonderful cause she has done wonders working with her. Tru is following simple commands, her behavior is better, awesome really, and she just seems happier more of the time now. I guess I wasn't challenging her enough here at home. I've been told she will go up the slide by herself and go down all by herself. I can't wait to see her do it, along with pedaling her bicycle they rigged up with Velcro. I 'll take pictures. Until the next time I have some peace and quiet. . . . . . . .
~Have a beautiful day~
Monday, October 27, 2008
Wednesday, October 8, 2008
Well everything went smoothly on our trip to Riley's this year. No getting lost the the bad parts of town. Tru and Tre' were both well behaved in the back seat on the way up and back. No screaming fits or crying. The visit with the doctor was good. They couldn't get an ABR test scheduled for that day, so I'm waiting for them to call, if they don't call by the end of the week, I'm calling them. I did tell them about my concern about Tru having headache. Since she has gotten her glasses them seem to have subsided, but she still gets them every now and then. I feel so bad for her when they bother her. She just puts her little hand either on the side of her head or on her forehead, depending on what type of headache it is I guess. I wish she could tell me so I knew for sure. The doctor said that they could put her on a daily medication that would stop the headaches all together, but at what cost I wonder. I told her if the headaches every started occurring daily, we would revisit that issue but until then. . . every time she gets a headache, she gets a dose of Tylenol, and I lay with her in a dark room and hold her close to me. At school , the plan is to let her lay down in the isolation room without the lights on and have one of the ladies sit with her & comfort her. If it doesn't improve in an hour or so, I would come and get her. It hasn't come to that though. Like I said the glasses have really improved the symptoms. I'm keeping track of it now & the teacher haven't mentioned anything to me yet, so we carry on. . .
~Have a great Day~
~Have a great Day~