…for Emma’s IEP, that is.  It is that time of year where we, as a team, sit down and discuss where Emma’s at, and what her goals should be.  I always stress out around this time because I never know if our goals will match up.  In other words, what I think Emma needs may not be what they think Emma needs.  For example, a few people on the team last year didn’t think Emma would need a full-time aide to help her in the classroom.  I knew her better then that, and I fought for the aide.  In the end, she got the aide (of course), but not without a few battles.  Did she need the aide? Absolutely.  Is she doing awesome with the aide? Absolutely.  (Insert “I Told You So” here)

So I can’t help but wonder what, if any, obstacles will come our way.  I won’t be naive to think that she will get everything she needs without any struggles from the team.  I always go into these with a firm stance on what I believe she needs as a student.  I’m not sure whether the team sees it as a benefit or not, but I think that it’s lucky for me (and Emma) that I used to teach.  I am able to see both sides of the table.  This also means I’m no fool and you won’t be able to pull the wool over my eyes.  I think a lot of parents are like that.  They know me better then that, now.  I am here to fight for what Emma needs, and no one will stand in my way.  Got that?

Phew.

If anyone has gone through the IEP process, it can be grueling, draining, and a battle.  One thing I highly recommend is hiring an advocate.  I have hired a wonderful advocate, Chris. He has been wonderful in supporting Emma’s needs, and ours.  What I like about Chris is that he has quite the education to back up his expertise.  But more than the education, he’s got the experience.  See, he’s got ONH as well.  So his input comes from a place of book smarts, as well as personal experience.  Can’t beat that combo.  He’s been a tremendous help with Emma.  And while he’s in Ohio, we just conference him in on telephone!

We have this IEP in 2 weeks.  I’m nervous…not gonna lie.  I don’t typically like meetings, and I definitely don’t like confrontation (though it’s never really gotten to that point).  I will definitely let you know how it all turns out!

If you’ve been through an IEP, what were your experiences?

The advice had to do with my blog, and came from this very creative and sweet lady!  She told me that if my blog is geared toward a more specific group (yes), then I need to keep that focus.  So, basically I need to fine tune my postings and shift more towards kids with special needs.  That’s why I’m here, right?  But honestly, I am trying to appeal to a larger group.  It seems as though I’m trying to please everyone.  And apparently that’s near impossible!  I also don’t want to come off as “preachy”.  Know what I mean?  I’m a normal mom, just like everyone else.  I don’t know any more or any less, but I think that the experiences I’ve had are worth sharing.  And the conclusions I’ve come to (after said experiences) might benefit someone else!  So here we go!

Remember my post about Emma’s diagnosis and how we came to that?  You can refresh your memory here.  I thought about that post a few days later.  I’m sure it left a lot of question marks and I’m surprised no one asked!  But, given these diagnoses, what did that mean for Emma?  How did it change her life?  And so now I’ll answer those questions.  I’ll break it down and give more medical answers.  It might be lengthy.  Bear with me!

Emma was originally diagnosed with Optic Nerve Hypoplasia (ONH) at the age of 4 months.  What did that mean?  To us, not much.  I remember hearing the description to mean that she had limited vision in her right eye, and because of that, it appeared “lazy”.  After seeing 2 of the best pediatric ophthalmologists in area, I was surprised they didn’t fill us in.  ONH is where the optic nerve is malformed or not formed.  Because of that, vision can be severely limited, and in most cases, there is no vision at all.  Emma is a lucky. She has it in one eye only (about 80% of the time, ONH occurs in both eyes).  And the eye that is affected does have usable vision.  Here’s a quick little anatomy lesson.  The optic nerve contains about a million strands or fibers.  Emma contains about 300,000 so that means her vision is only about 30% of what it should be.  But she can still use what she has!  Another cool fact is that vision in the affected eye(s) can sometimes improve!  Even better is that Emma’s eye is improving!  We have since switched pediatric ophthalmologists and now see the #1 guy (in our opinion) who is in L.A.  We consider ourselves to be very lucky that we’re able to travel every year to have her be seen by Dr. Borchert!

Before Dr. Borchert, we tried patching her good eye in order to strengthen her weak eye.  Oh, that was SO trying on everyone involved, especially her.  She hated that patch.  I can’t blame her!  She withdrew from us, and it was horrible to see.  There was a point in time where she was wearing that patch 6 hours a day!  That’s a LONG time for a toddler…she was probably around 18 months old by then.  This was, of course, pre-Dr. Borchert.  Once we saw him, he explained it very clearly to us.  Emma did have usable vision in her right eye.  However, it wasn’t enough usable vision to benefit from a patch.  The vision (if any) she gained from patching wasn’t enough to outweigh the information she’d be receiving from her good eye, if that makes sense.  She’d be missing out on so much more by covering up her strong eye (which, by the way, is about 20/25).  Does that make sense?  Hearing that from Dr. Borchert was music to our ears…no more patching!

She started wearing glasses at 18 months.  We had baby steps with the glasses…but I was surprised that it really didn’t take her long to get used to them.  I really felt like she realized how much better she could see…even at that young age!  I’ll tell you what, I have always made sure, though, that her glasses are nothing short of adorable.  If my girl has to have an accessory on 24/7, it’s gonna be cute, right?  Right now our glasses are purple!  We have some pink ones that need to be fixed (another issue with a kid who wears glasses…we’ve probably gone through 10 pairs since her first!  That’s just how it is!

At the age of 22 months, she had surgery to correct strabismus in both eyes.  That’s the fancy word for lazy eye.  Because her right eye didn’t work very well, it went “lazy” on us.  You can see that in this first picture.  We decided to have the surgery for 2 reasons.  First, we thought that if the eyes were “set” correctly, that would help her poor eye work with her strong eye.  Secondly, we did it for aesthetic purposes.  Forming a child’s self-esteem starts young, and we didn’t want her to feel poorly about her eyes when they couldn’t see straight.  We had already encountered comments by people who just weren’t very tactful.  The surgery was a success.  Even to this day, her eyes don’t really cross unless she’s really tired.  And with her glasses on, they cross even less.

I think that brings us up to speed as far as her vision’s concerned!  So now that I’ve given you a short novel to read, I think I’ll save the other “big” diagnosis, Septo-Optic Dysplasia, or SOD, for tomorrow.  I don’t want to bore or confuse anyone!  But I do want to encourage comments or questions…let’s get some feedback!!

By the way, have you ever seen a cuter little girl with pink glasses?  I didn’t think so!

Emma with her patch on

Emma was born on February 17th, 2004. She came at 41 weeks of pregnancy, 18 hours of labor, and an emergency C-Section. She did not want to come out! But once she did, she was a beautiful and happy baby weighing in at 6 lbs, 11 ozs, and 19 inches long. She had no hair, and big blue eyes. She was perfect in every way!

We didn’t know about Emma’s diagnosis of Septo-Optic Dysplasia until she was just over 2 years old. She had gotten the diagnosis of Optic Nerve Hypoplasia when she was 4 months old, however the two ophthalmologists we saw neglected to tell us that 80% of kids with ONH also have hormone deficiencies.

On March 23rd, 2006, we took Emma to the ER because she was dehydrated from a flu bug. When we got to the ER, we found out her blood sugar was 11 (a healthy level is anywhere from 80-110) and her sodium was also dangerously low. They hydrated her and got her blood sugar and sodium back up. The problem was that once they stopped, it would drop again. At that point, she went through numerous tests, including a spinal tap (which came back clean). We spent the night in the hospital because they couldn’t find out what was wrong with her. It was a terrifying ordeal. During the night, she had a few seizures, which we later found out were mini-strokes. In the morning, they decided to transport her to Phoenix Children’s Hospital because they couldn’t find any answers. I was thinking that she must be in pretty bad shape to be transported to PCH…that’s where the really sick kids go. Not only were we at PCH, but we were in the Pediatric Intensive Care Unit (PICU).

We stayed in the PICU for 5 agonizing days. They did so many tests on Emma, I lost count. I don’t even remember what they tested for, but I do remember some of the tests being sent to places like California and Texas. It would take days to receive the results of those. Emma had so many tubes and cords coming out of her little body. She had messy hair from a couple of EEG’s. She had bruised arms and legs from attempts at getting a good vein for IV’s. After a few days, Emma woke up more, she was able to eat again, sit up again, and eventually start playing.

I can’t speak for my husband, but I felt like I was in a daze. The days ran together and everything seemed blurry. It’s worth mentioning that I was 7 months pregnant at the time, which might account for the lapse in clear thinking and memory! Brett was a champ. He stayed with Emma every night at the hospital. I went home because we decided that since I am a very light sleeper, it was best I sleep in my own bed. After all, we had another child that I was caring for.

On March 30th, we finally got an answer. After the neurologist, endocrinologist, ophthalmologist, and pediatrician met, they all agreed Emma had septo-optic dysplasia. Of course neither of us had ever heard of it…it was completely foreign to us. To find out that Emma would need oral medicine 3 times a day, let alone a shot every night, was completely daunting to us. It was hard to comprehend. We learned how to give her the shots in the hospital, and how to take her blood sugar, as we’d do that a couple of times a day for the next 2-3 weeks. We learned all about adrenal crisis, and the signs of it. We learned about stress dosing and quick sugars! We learned it all from a wonderful nurse, Fran, whom I still email and call regularly to ask questions and get advice.

I know my head was spinning when we got home. But we did it…I got myself completely organized with a system for her medications. I got her emergency medications in a diaper bag, as well as an emergency kit for the car, stocked with quick sugars, snacks, and other necessary items.

It’s been 2 years since Emma’s diagnosis. And every day I thank God that Emma is still with us. I didn’t realize, at the time, how close we were to losing her. She is a happy and healthy little girl with a mild (in my opinion) case of SOD. Brett and I think of her condition as a life sentence, not a death sentence. God gave us this special little girl to teach us something, and she had done just that. She’s taught us love, patience, faith, trust, and how to give shots, and we are so blessed to have the privilege of being her parents!

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