Vision specialist

So with the holidays and everything, I never updated on what happened after the functional vision assessment that Julia had.  When the specialist came to the house, she "played" with Julia and then told me that she recommended that Julia be checked quarterly.  This meant that she would be on "monitor" status.  I am very familiar with "monitor" status because I teach special ed.  In high school, if you are on monitor status, you will be dropped from services after a semester if you don't need the
extra help anymore.

Well, the vision specialist (she works for Delta Gamma), the occupational therapist, and Julia's case manager came to the house to review the functional vision assessment.  There was a lot of discussion and I contributed as much as I could.  It again was very surreal to be the parent in this meeting and not the special education teacher.  The team decided that Julia does need vision services so the vision specialist will be coming to the house once a month to work with her on functional vision.  She also will still receive occupational therapy once a month as well.  The vision specialist/occupational therapist will be working on fine motor skills, scanning, and mobility, especially when it involves depth perception. 

We also talked about how hard it was to keep her glasses on.  At the time (this was back before Christmas) she was still hit or miss with keeping them on.  A goal was put in her IFSP about glasses.  The great news about this is that when she gets her next prescription, First Steps will pay for a set of glasses!  Hooray!  That is definitely great news since she will probably need a new pair shortly after surgery.  Now I won't have to just replace the lenses, but can get her new frames as well.

Some days I swear that Julia can see really well.  I wonder if it is the mom in me wanting the best for my daughter (can we say denial).  Like today, she was picking up nerf darts off the floor, and that was without her glasses!  Other times I notice that she has trouble.  She doesn't use her peripheral vision so she will trip over things on the floor and has a lot of trouble with steps.  She is very, very hesitant to let go of me in an unfamiliar setting. 

I have my moments where I wonder if she really needs these services. The normal person would never know that her vision isn't great.   But then the special educator in me reminds my nagging conscience that First Steps wouldn't have qualified her if she didn't need the help and that preventative services are always more successful than trying to catch up later.

So right now we are just patiently waiting for surgery day.  I had a little tearful moment today when Julia was in the tub.  Without her glasses on, you can really see her eyes.  They are definitely turning more hazel/brown colored.  I got a little sad because the pupil in her right eye is not centered in her eye.  It is small and a little oddly shaped.  My heart hurts for the future and Julia having heartache over being "different."  I love my little girl and she is absolutely perfect.  But not everyone sees the perfection that I see.  I see the courage, intelligence and sense of humor that she has.  I mean really, she takes eye drops like a champ (nothing like her brother - it is like wrestling a wet squid to get drops in his eyes), she has had more appointments than I can count and is about to have her fourth surgery.  She is a champ.  She is beautiful.  She is my Julie-bean.

And the results are in

And they are not what we expected.  I knew that Julia's right eye would not have "normal" vision.  I expected a number like 20/200 (which is legally blind).  I had steeled myself to hear that and be okay.  I figured the left eye would come in somewhere at 20/40 or so.  Her left eye is a bit farsighted, but at the last appointment we decided to wait on glasses because we were hoping she would grow out of it.  So I finally got a call with the numbers and...



20/400 in the right eye

20/100 in the left eye

I was stunned.  I had never expected her left eye to be that impaired.  We are counting on her left eye to be strong and healthy so that if we never attained good vision with the right, well, we could count on the left.  Now her "sound" eye (as the doc calls it) isn't seeming so sound.

Even the doc was surprised, which sparked great anxiety in me.  I didn't understand how my baby's vision is so terrible but she runs around like a maniac!

To make matters worse, we had a terrible incident with her on Sunday.  Jed accidentally ran into her and she fell straight back onto her head.  She immediately started screaming, but when I picked her up, she stopped.  I figured she had calmed down, but when I looked at her, her head was tilted back and she wasn't breathing.  Her eyes rolled back in her head and she went limp.  James started screaming her name and I froze.  After blowing in her face and even puffing air into her mouth, she started screaming.  She cried and cried, but was lethargic and sleepy.  So we immediately went to the ER.  Of course, by the time we got there, she was acting completely normal.  Docs said that she probably was so stunned that she tried to take a long, deep inhale but got "stuck" and held her breath.  She didn't have a concussion or anything so we came home.  It was the scariest moment of my life.  Scarier than handing over my baby to a surgeon, scarier than learning about phpv and cataracts, scarier than anything I have ever experienced.  I keep seeing her image in my face and it tears me up every time.  I thought I was going to lose my baby in that moment, and it was too much.  I couldn't take it.

Well, that incident, on top of the new vision information has set my anxiety on edge.  I am by nature an anxious person and always feel better if I can "do" something or "fix" it.  Well, I can't fix this and it makes me crazy.  I'm walking around with a ball of nerves in my stomach feeling like I am constantly filled with adrenalin.  It is a horrible feeling and I'm not sure what to do (short of becoming a zombie on a ton of anxiety meds!)  So I text some imoms and realize I'm not alone.  Read some other blogs and know that other families are facing the same challenges.  Talk to my husband and my mom and accept that I am a great mom that is taking care of her baby in the best way she can.

So, after emails with the doc, contacting First Steps about more vision services, and lots of tears - I have done all I can.  We are seeing the doc Oct. 2nd (perhaps earlier - he told me to call his nurse to get squeezed in) and he is going to do the Cardiff test himself to make sure the numbers are right.  And we will go from there.  He is also going to go over the results with the surgeon to see if/when we should do the strabismus surgery.

There is a bit of good news though.  The fabulous nurse, Tracy, from the Eye Clinic called and said that Julia's back up contact was in.  The company sent a three pack (so we have three back ups!) and the cost is only 90 dollars for all three!  I don't know if this is an apology for messing up so many lenses or their normal bulk price, but it is great.  I can't figure out how one lens is 150 and three are 90, but whatever.  Maybe they made a few extra and since they are custom and don't really sell that size they are discounting it.  Who cares - I get cheaper lenses!  But wait, it gets better...



The doc emailed me and he spoke with our insurance and they are approving the lens!  So I am getting three lenses at no cost.  That made my day.  Gave me just enough boost to keep going.  So we will get up tomorrow, put the contact in, collect our patches, and go about our day.  One day, one patch, one contact at a time...we will do this.