Tuesday, October 19, 2010

NF Clinic Visit

Yesterday Sara and I attended NF Clinic at TCH.  This is a multiple disciplinary clinic where several specialist come together at the same time and check on the kids and make sure that we're all on the same page and doing what's best for Sara.

First we saw Sara's rehab and physical therapy doc.  She's great and really informative.  Curtis brought up the idea of amputating Sara's leg, which has been on the "possibilities" list since before she was diagnosed.  He starting to think the time is getting closer, and I'm not at all on the same page.  We had a long talk about how we would know when it was time to make that decision, and all that would come with it.  She offered to let us visit the amputation clinic, or come to another appt with just her to talk about it.  I have no intentions of making this decision right now.  I don't think its needed, and Sara doesn't want to do it.  And if Sara doesn't want to do it, that's all the reason I need to say not yet!  We also talked about getting Sara an adaptive tricycle for her to ride, which is great!  And lastly we talked about options for maybe FINALLY getting her out of diapers.  Apparently there are options for Sara, which I had no idea.  So I need to review what she said, do some research and figure out what I think is best for her.

Next we saw neurology.  I had almost no concerns here, so she just checked Sara's eyes and reflexes and reported that I needed to make sure to get Sara in for her yearly eye exam.  I got the reminder post card last week.  She said she didn't see any issues, but it would be good for her to have a full exam.  Its very common for NF patients to have problems with their eyes.

Then we were seen by neuro-oncology.  I've been in touch a lot with this doctor recently while we've been changing the dose of Sara's medication to find a limit that works better for her in controlling the damaged nerves in her leg. All I wanted to ask was if it was time for Sara's PET scan, which we are suppose to do every 2 years.  This scan checks her tumors to see if any of them have turned malignant.  We don't suspect at all that's the case, but always a good thing to check.

Then we saw the geneticist.  Sara's regular doctor was out because of a family emergency, but the the doc we did see was wonderful and very informative.  We just talked about if there was any new medications or drug trials available, and no, there isn't.  So this was also a short visit.

Lastly we saw Sara's neuro-psychologist.  NF patients have a lot of issues with learning disabilities, so this is something we've been tracking very closely.  I don't think Sara has ANY issues learning, and I was right.  We tested her again this time (its been almost a year) and Sara did great.  We test in 4 areas: spacial and visual processing, fine motor skills, receptive language skills (Sara's understanding of language), and expressive language (how Sara uses language).

Spacial and visual processing is checked by asking Sara to stack blocks, match pictures, name colors, count, identify letters, fold paper, and other like things.  The test is scored in relation to how many months old a child is.  Sara is 44 months old, and in this area she scored at 54 months.  Meaning, Sara is almost an entire year ahead!!

In fine motor skills Sara was ahead quite a bit last time we tested her.  This was due to the fact that she hadn't been learning to walk, run, and jump like other kids and therefore had more time to commit to learning fine motor skilled activities.  Now she has evened out, and scores at 44 months.  She can cut with scissors, hold a pencil correctly, and draw certain shapes fairly well.

Sara's receptive language skills is another area that she scored very high!  She absolutely understands language, and what you tell her.  She can follow three step directions, and do many things when asked.  She scored at 59 months in this area.  Basically she has the understanding of a 5 year old (or 60 months).  Guess I can't get anything by her any more! 

Lastly, is Sara's expressive language.  Last time Sara was behind in this area, and started having speech therapy at school.  Yesterday's test showed that she has caught up very well, and will no longer need therapy.  She is expressing herself in an age appropriate way at 45 months.  I'm so excited she's caught up to her peers.  I think school has really helped this!!

This was a great visit overall!  I learned some new things, and the testing confirmed what I suspected.  My daughter is super smart!  Of course I came home with loads of homework...appt to make, things to think about, and time to return for Sara's new shoes in a couple weeks. Its always nice to know that I'm not over looking anything; it helps me sleep at night to know I'm doing all I can for her.

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