Neurofibromatosis Clinic

These yearly appointments always overwhelm me.  They make for a long day...And the information we get is quick and concentrated.

Here is some advise on how to make the most of your NF Clinic Appointment.  I hope it helps!

• Plan for a LONG appointment! These appointments can take a while....Mostly because you are seen by a number of different doctors.  This is GREAT...But can also make for a lot of waiting around.  Bring a book and activities for your child.  (and Food.  Bring Food!)
  
• BE ON TIME!  Typically WE schedule our NF appointment a YEAR in advance....So be respectful - and know that there are other families that will be affected if you are late.
  
• Write your questions down (and remember to bring them with you. *lol*)  Note ANY concerns that you may have...NO-MATTER-HOW-SMALL-THEY-ARE!  
  -You will see many doctors during this visit...So make sure you are covering any issues you would like to discuss.
  Take the time to write the answers you get down....I know for me...I am great at asking the questions....But LOUSY at remembering what the doctor actually said to me.
  
  
• GET REFERRALS!  This is a GREAT time to let-it-all-out and get answers and referrals for your child!  At our appointment...We got referrals for: MRI, Sleep study, Medication changes, dietitian, pain management clinic, behavior clinic and psychiatry appnt....Don't be afraid to ask....and be open to suggestions!
  
  Our appointment was a little different than yours will be....After all, I had THREE kids being seen...But the general idea, is to be ready....And try not to get overwhelmed.  These appointments are to HELP guide you through this diagnosis.
  
  If you have any specific questions about your NF appointment...Please comment below and I will respond.

THRIVE ON!!

NF Clinic

We were totally prepared for a long day.  We packed a lunch and some snacks and headed out to Aurora for our yearly check-in with the genetics department at the Children's Hospital.

We are PROS when it comes to these appointments...We know that there will be A LOT of doctors and A LOT of questions.  I am so happy that I was able to get all 3 kids in - the same day!

Our morning got off to an early start with ALL 3 kiddos receiving eye exams.  These aren't your general, walk-in type exams....The doctors here specialize in early detection of Neurofibromatosis complications. Since about 40% of people with NF have tumors called Optic Gliomas, yearly exams are very important.

Out of my 3 NF children--One has an Optic Nerve tumor.

The exams took a couple hours, since we had to dilate --  

I noticed after we left the Eye Clinic that Braden's eyes showed something weird.  One pupil was large, the other had gone back to normal.  So I called the eye clinic and they told us to go back over, just to make sure everything was okay.....

And it was.  The DR told us that this COULD have something to do with Braden's Optic Glioma....The eyes returned to normal within a few hours.

After lunch, we headed to the genetics clinic.  It was a revolving door of doctors. 

During our time at the clinic- I got to meet the president of the Colorado Chapter of CTF.  She came into the room and shook my hand, telling me how excited she was to meet me.  This totally threw me off...But it was pretty awesome.

She knew all about 'Thriving with NF' and my book....And she asked me to come to some of the events that are coming up, to promote and sell my book.  This was a bit of a head-rush type of thing...And really made my day. :)

I also got to meet another family dealing with NF.  Life sure got put into perspective (again) when I saw their faces and met their young son.  It scares me to know that NF can be so unpredictable in how it affects people.  This family seemed so defeated.  

They were happy to have met me....But I left them feeling like I should have done more for them.  I don't want to come off as someone who is totally living life with no worries...Because -trust me, I HATE NF as much as anyone who is dealing with it....But I felt this feeling in my gut....That I need to be doing MORE!

I sit behind the comfort of my computer...And write.  I tell stories about our NF journey, that HOPEFULLY helps people feel less alone....And maybe - Just maybe helps to change someones attitude about how they act/respond.

I don't know...Maybe it's time to be more OUT THERE...Get in front of audiences and groups that want to hear about HOW I came to THRIVE with NF.

I've done radio, magazine interviews and have even done a keynote -- and I LIKE how that makes me feel...But I have never really considered myself a "Speaker"...(That's my hubby's job title)

Maybe it's time I change that about myself.

THRIVE ON