Eye update

I was going to put some fun pics in this post, but my computer is being wacky and won't read the photos off my phone or camera.  So it is pic-free, but still exciting!

Julia had her quarterly eye appointment with Dr. Hoekel on Tuesday.  I get so nervous leading up to these appointments.  I'm always afraid we are going to be dealing with another surgery or another setback.  After the last appointment went so well, I was sure I would be getting some bad news this time. 

Julia was awesome.  She sat in my lap and let Dr. Hoekel look closely at her eyes with the microscope and with the prisms.  Her right eye does float up sometimes, but it is only occasionally.

She got the dilating drops and we waited in the waiting room.  We finally went back and it was time to check her prescription.  She was still great and let the doc look at her eyes with the light and the lenses.  Her right eye has dropped another diopter, bringing it to +7.00 with a +2.75 bifocal.  Her left eye stayed at +5.25.  Dr. Hoekel is stumped.  He is not sure why her eye continues to grow.  I am shocked because when we started this journey, I figured she would be in a super high-power contact for years.  Now she is down into glasses and it is looking like an IOL won't even be needed!  He said a "normal" farsighted eye in a child changes .1 diopter a year.  So an entire diopter change would take a decade.  Julia's eye has changed almost 10 diopters in less than a year.  Crazy!  This means her little eye is growing and growing.  Dr. Hoekel assured us that while it is unusual, it is not a bad thing.

She is using her right eye some, but definitely not equally with the left.  We couldn't get a real acuity test because she hasn't quite grasped the concept of the picture charts (I tried the flashcards, she didn't get it).  He estimated the right eye is probably somewhere around 20/200.

We also talked about vision therapy.  He wasn't against it and actually said it can be really helpful but he is only familiar with exercises that can be done with a verbal child.  The author of "Fixing my gaze," Susan Barry, has actually met with Julia's surgeon a half dozen times.  Dr. Tychson, the surgeon, believes that Susan actually had nystagmus (trembling eyes) and was able to achieve stereovision because she was able to calm her nystagmus with vision therapy.  Dr. Tychson has recently published several articles on nystagmus and actually has a full time monkey lab where he does research.  (the monkey info was a little freaky, but I am glad Julia has such a smart doc!).  Dr. Hoekel said that Julia's nystagmus should get better over time, but will probably never completely go away.

So Julia is getting a new lens for the right side of her glasses.  Since it is a doctor change, and is within 90 days of purchase, it is free!  Hurray!

We also discussed patching and how difficult it is.  Dr. Hoekel said that if it gets to the point where she will not cooperate, he can have a plano lens put in the left side of her glasses and we can use dilating drops in her left eye.  I don't want to do this because it essentially leaves her with fuzzy, fuzzy vision in the left eye 24/7.  Research shows that it works as well as patching, but requires drops daily instead of just 2-3 hours of patching.  So we are going to persist with the patch.

So that was a long update, but overall, a fantastic appointment.  I may look into some vision therapy after our next appointment, especially if we can get a more accurate acuity reading.

Finally...a good appointment

Julia had a great appointment with her pediatric opthamologist!  Finally!  No surprises, no bad news, no scheduling surgery or anesthesia.  I was so happy and relieved.  Here is the rundown...

Her eye pressures are 14 and 17.  Normal is 16 +/- 4.  So these are great!

Her right eye has grown a millimeter and a half!  This is a front to back measurement, not side to side.  Basically this means her prescription has changed two diopters in that eye.  The left eye only grew a half a millimeter, so the prescription really didn't change.  This is very strange...but good!  It means the prescription in each eye is getting closer and closer which is a good thing.  It also means the right eye is catching up to the left eye in size. 

Her cornea is still SUPER steep (hers is a 56, a normal adult is a 43). 

Doc says it seems like her visual system is trying to find an equilibrium.  He is stumped, but pleased.  It seems Julia's eyes are not behaving like he would expect.  We are just going to keep checking in every 3 months to see how it goes.  At this rate, it is quite possible that she won't need the implant because the script in each eye will be so close together.

So her new prescription is a +10.75 in the right, and +5.25 in the left.  But this is just for near vision.  She is getting a bifocal in her right eye, so it will actually be a +8 in the right and a +5.25 in the left with a +2.75 bifocal in the right.  We are getting her new glasses and had them made as transitions so she isn't so affected by the sun.  (And the best part is First Steps is paying for them!)  Here is a pic:

Obviously the color is a bit off in the pic.  It is going to be a burgundy pearl color.  I hope it looks good on her skin.  We also got a sheet of pics to start working on with Julia.  We are hoping to get her to be able to point to or name a pic when she sees it so we can get a better estimate of her acuity.  They look like this:

 

 

We are still patching.  We had a nice discussion on patching with the doc.  It has been pretty rough lately.  Hopefully with the new glasses things will go a bit smoother.  Her current prescription has her clearest point only 3 inches from her face!  No wonder she rips the patch off!  We are going to try for 3 hours.  I asked if we needed to do more and he said that obviously patching 6 hours a day will get more results, but we are in this for the long haul.  He said we need to balance quality of life and also not damaging her sound eye.  So we are going for a solid 3 hours a day.

 

So there you are!  A great appointment!  Thank you for all the prayers.  I know they helped.  I'll post a pic as soon as her glasses are in.

Easter

Easter was awesome.  The weather was perfect (the kids not so perfect - but that is to be expected).  We started with dyeing eggs last Sunday (while it snowed 14 inches).

I know I shared egg dyeing pics in the last post, but I had better ones on my camera that just got uploaded.

And of course, the Easter Bunny came and brought awesome baskets.  (The Easter Bunny really shouldn't go go Target anymore - he really goes overboard).

Then it was time to find all the eggs the Easter Bunny hid.  Julia wasn't super thrilled, but once she realized there was candy in the eggs, she was all for it.  Jed was very excited, and had to dump open every egg as soon as he found it.

He is a little ambitious.  What can I say?

Then they attacked their baskets.

 

 

Yes, I got Julia "egg" glasses for Easter.  You know it's funny.

And they got bunny ears.

And then they started eating candy.

Time for church!  We tried to get a pic of them all dressed up, but that is about as easy of pinning down an octopus.

So instead we had a family member take a family pic after church.  Not too shabby.

There was another egg hunt with the Schultz cousins.  I can't even tell you how perfect the weather was! 

As you can see, Jed ran everywhere...too and fro, running, running, running.  Julia stayed close to the front door.  I think the sunshine was bothering her eye.  And while the camo patch was gone, she was still sporting a camo basket for camopatch Sunday!

Time to see what we got!

Notice the chipmunk cheeks that are full of jelly beans.

She is probably eating a jelly bean too.

And a pic of all the Schultz cousins!

My kids never cooperate for photos.  Sigh...

 

And then another egg hunt with the Gierer cousins.

 

The bow was long gone by this point.

And Jed had lost his sports coat.

And finally, checking out the next haul of candy with some cousins.  Just hanging on the front porch.

By the time we got home the kids were overtired, over sugared and just plain crabby.  But I would do it again in a heartbeat.  Jed loved the entire day and Julia seemed to enjoy herself too.

Now we get to enjoy a week of spring break.  Poor daddy still has to work.  Julia and I will be heading to the eye doc tomorrow, so keep us in your prayers.

More snow

Seriously, I am sooooo ready for spring.  Next weekend is Easter and we are hovering around 35 degrees here.  And to top it off, we got over 12 inches of snow on Sunday!  So, we ended up with a snow day on Monday. 

This is not even the full amount!  It was still snowing at this point.

 

Don't get me wrong, I love being able to stay home with my kids, but I would prefer to stay home in May when the weather is better. You see, every snow day we have adds an extra day to the end of our school year. So now we are at May 23rd as our last day. Boo.

 

So the day it snowed, we decided to go ahead and dye our Easter Eggs.  Nothing fancy, but we sure had fun.

 

 

Julia is definitely becoming more aware.  She understands that she needs to wear glasses and is definitely becoming a pro at all things related to the EYE.

 

 

 And with having to stay inside comes the multiplication of germs. Both Jed and Julia have been through two rounds of antibiotics for ear infections. Julia and James both had the stomach bug. Julia's was really bad and she ended up in the emergency room. So glad that spring is around the corner. Maybe I can teach the kids to clean up their germs?

Nerves have set in. Julia is seeing the Pediatric Opthamologist on Tuesday and I am nervous. I seem to be more nervous when I think things are going well. It is like I am waiting for the shoe to drop. I am praying that this appointment goes well and there are no surprises. I am kind of hoping for a new prescription so that we can get new glasses. I would like Julia to have transition lenses for the summer, and since First Steps is paying for a pair, I figure this is as good of a time as any! Not sure if she will graduate to a bifocal yet or not. We will have to wait and see what good ole' Dr. H says!  The bad thing is Julia is fighting the patch again.  And boy can she fight!  We've been using the arm braces again because otherwise she will rip the patch off every 2 minutes.

Cheese from the cheese ball!

Patch off.

Here mom - I don't need the arm braces.

Here, you can have the patch too.

 

So wish us luck.  We will head to Children's on Tuesday (thankfully we are on Spring Break) and see what the docs have to say.  We also will be having therapy with the Occupational Therapist and vision specialist this weekend.  Hopefully spring is coming soon and we can put all the snow behind us!

IFSP and snowdays

This blog is a little overdue.  I am a bit jealous of some other imom's that seem to find the time to blog a bit more often than I.  Not sure how they find the time - they must be superhuman superwoman supermoms.  I struggle to just get laundry done, dishes washed and kids bathed!  Someday I'll figure all this out.

Over Christmas break we had one day of snow.  Jed hasn't really been able to play in the snow, so this was his first opportunity to go outside and go sledding.  He was thrilled and kept saying, "I love playin in the 'no."  We went down the hill in the back yard over and over and he quickly realized that he would go a lot faster if I rode with him (I didn't tell him that it is because I weigh 5 times as much as he does!).

The snow only lasted a day - but it was sure fun while it was there!

 

 

If you look close int he pic above, you can see Julia photobombing.  And the wooden sign is a Christmas present from my hubby.  I've wanted one for ages so he found a place that makes them and drove 2 hours to get it and surprise me.  I love him.

 

Just an update on Jed.  I know I focus a ton on Julia -since her eye is why this blog started in the first place - but Jed is too awesome to leave out. 

 

He has started talking.  A lot.  Like never stops.  He comments on everything and his vocabulary amazes me.  He is potty trained (almost night trained too) and I am so proud of him.  I love when I ask him to do something and he says, "All right" in his little voice.  Every morning when we are leaving for daycare he makes me roll down the window so he can say good bye to Daddy. 

 

James says, "Bye Jed."

 

"Bye, Daddy."

 

"I love you Jed."

 

"I love you too Daddy."

 

Melts my heart every morning.

 

He is very polite.  Always says please and thank you and is quick to say, "Nice job, Mommy!" when I do anything remotely good.  He is starting to be more independent and wants to play in his room with his toys.  But he doesn't want to go alone - he wants Julia to play with him.  He really loves his little sister, he just sometimes hugs too hard. 

 

As for Julia, we just had her IFSP meeting.  These are the meetings we have every 6 months with First Steps (early intervention) to review her goals and services.  I got a little teary when we looked back at some of her goals.  I remember when her goals were to sit up on her own and to take a bottle faster.  Now she is working on being more confident in unfamiliar situations, scanning horizontally and vertically, using her peripheral vision and speech.

 

 

Right now she is doing great.  She will stop at a crack in the driveway because she can't tell if it is a step or just a crack.  But that is good!  At least she doesn't just step over everything - that could be dangerous since she doesn't have depth perception.  She is starting to try to use a fork and is completely off bottles.  She doesn't really do any pretend play, but she will dump out the buckets of play food and follow her brother around.  We are continuing vision services once a month and OT once a month.  We meet again in 6 months and will go over goals again and possible add in speech therapy.  She isn't really saying any words yet, but I'm not concerned yet.  She obviously understands things that we say to her, she just hasn't started talking.  The OT wants us to ditch the binky.  I'm not thrilled about it, but I understand her reasoning.  I told her we weren't going to attempt that until after surgery in a few weeks.

 

I found out that since she is in First Steps she qualifies for a 2 hour a week preschool program at United Services when she turns 18 months.  I'll need to find transportation there and back since it is during my work hours, but I am excited for her to be working with teachers and around other kids her age, even if it is only for a short time each week. 

 

 

I look at my little girl and realize that she is turning into a little person - she isn't a baby anymore.  That is a very sad thing, but also an awesome thing.  When I see all that she can do and remember all that she has overcome, I am very proud.

 

I'm nervous about her upcoming surgery.  I know it is necessary and I will be happy when her eyes are straight, but I am ready to have it over with.  I am just praying it will help with her head tilt too.  It has gotten more noticeable that she tilts her head to the left to see.

 

This is the "I didn't get my way" face.

 

 

So things are trucking along in our household.  I know she doesn't have her glasses on in these pics, but usually by evening, she is done with the glasses and won't wear them.  It happens every night when she starts to get tired.  I probably should force her to wear them, but I figure that after a long day of patching and wearing them, her eyes are probably tired.

 

So keep us in your prayers.  We see the doc for new measurements (of her eye turn) on Jan. 29 and then surgery in Feb. 5th.

 

And just for fun...