Update on Finley

Last night I had a chance to talk with one my good friends who happens to also be an special education teacher.  We worked together the whole time we lived in Connecticut, and I miss her terribly.  We try to catch up on the phone and keep in contact through facebook and visits as often as we can.  But it is not the same not getting to see her every day.  She is a true friend.

Anyway - after we caught up on the phone last night, I had a chance to pick her brain about Finley for a bit.  One thing I can always count on with Jess is that she will tell me the truth.  And she always has my back.  So I knew I would get honest advice and not just support.  Because I need both when it comes to Finley.

The concerns we have lately are some changes we have seen in her stamina and her vision.  While we can't know for sure what is happening, we know something has changed.  For example - Finley has a little chair she sits in to watch TV.  For as long as I can remember, she has been able to keep it 6-8 feet back from the TV and still see what is going on.  A few weeks ago, she started sitting on the floor in front of the TV.  At first I just thought she wanted to sit somewhere different.  But sitting there continued.  So, I moved her chair there, and it has been there ever since.  I did try to move it back, but she pushes it right up to the TV - less than a foot away - and watched from there.  IF she wants to sit with us on the couch and watch TV, she soon loses interest in the program because we are sure she cannot see what is going on.

So that is new.

She is back to complaining of her back hurting her.  Last year we went through a period of time where she would complain her back was hurting her.  She does lean over quite a bit in school to see the paper.  But then her teacher for the vision impaired (TVI) developed a slant board that worked great, and the complains basically stopped.  We use something similar at home plus she sits on a therapy slanted cushion that pushes her forward to straighten her back.  We haven't heard about her back in quite a while.

But a few weeks ago it started.  Each night when I was giving her a bath, she would ask me to run the warm water from the faucet over her back for awhile to make it feel better.  Or she would want me to rub her back.  She would ask to wear her bookbag (which she did last year) to make it feel better.  So my guess is the things we have in place are no longer working.

She is starting to complain of headaches.  It could just be weather related, but who's to know.  We will just have to wait and see on that one.  She doesn't complain often, but every once in awhile she will say her head is hurting her.

So these things on top of her boat loads of extra homework (due to braille) started to have me thinking.  Something needs to change.  While her teacher assures me she is keeping up well in class, and doing great, I feel like we are taxing her vision to the very edge.  I find it silly to make her read everything with her eyes when she is becoming quite the capable braille reader.  We are trying to preserve her vision for as long as possible so that when the cure comes, we have plenty to work with.

So Jess and I got to talking last night about what was reasonable to ask for at school.  And Jess didn't let me down.  She kindly reminded me that I am the mom and that if I feel that Finley needs something, then it is in my right to ask for it.  She knows that we are reasonable people.  She encouraged me to start with Finley's TVI - who knows the most about her vision needs - and go from there.

So after I got off the phone with her, I emailed her TVI.  I didn't expect to hear back from her, but decided to write while the conversation with Jess still fresh in my mind.  And in true Karen style (Finley's TVI) she answered me back.

Just like Jess, Karen has given us nothing but help and encouragement this last year.  She was very kind in her words, and also agreed she has noticed some changes in Finley as well.  Because she mostly does braille with her and doesn't require her to use her vision hardly at all when she sees her, she would talk with the classroom teacher, her aide and Phyical therapy on Tuesday to share our concerns and get some new things in place in the class.  She also agreed that we should put more braille into the classroom to give her eyes a break when possible.  I am glad she agreed.

I am also going to try and get Finley into the eye doctor as well.  Not that I feel like we will get much out of the appointment, but it would be good for the doctor to see things have changed.  We aren't due to go to the retinal specialist until March, but we may need to go sooner.  We will be due for a vision field test for her in January as well.  But even if we can't get into the specialist soon, I feel we are moving in the right direction to help Finley.

I guess we were due for a bump in the road.  For about 8 months, things have seemed to be going so well.  Very stable, and just moving along.  And then all of the sudden, things change.

We are trying to go with the flow, and just take it as it comes.  It is hard to be dosed again with the reality that she really is going blind.