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!

Pumpkins and Patches

So Halloween has come and gone, and we had a great time.  We went to the pumpkin patch last weekend and picked our pumpkins.  They were carved and put on the porch.  And for Halloween, we went trick or treating and enjoyed a lot of chocolate!

At the pumpkin patch!

Jed rode the pony!

Picking a pumpkin.

Jed with the pumpkins.

Scooping out the guts.

Carving pumpkins.

Jed was Tigger.

Julia was a pumpkin (for about 5 minutes)

Finished product!

 

 

 

And now that the festivities are over, it is time to head back to reality.  We've been having a bit of a rough time with Julia and her glasses.  I was convinced that she could see better with them on, but I just couldn't convince her of that fact!  We were having trouble keeping them on her face.

 

I love my glasses right now!

 

Eventually, she took them off and broke them.  If you notice in the pumpkin patch pics, she isn't wearing glasses because they were broken.

 

Definitely broken.

 

When she broke them the first time, we went ahead and ordered her some miraflex glasses.  Good thing we did because a couple weeks later she really broke her glasses!  The miraflex actually arrived the next day so we went and picked them up.

 



My new specs!

 

We still have trouble keeping them on, but she wears them more than she would wear the wire frames.

 

They are on...

And they are off!

 

 

Julia saw her eye doctor on Nov. 1st.  First we did the Cardiff test to check her acuity.  She didn't enjoy being patched for the test, but she seemed to respond to the cards.

 

Then we visited with Dr. Hoekel.  He said that her acuity was better - one line better in each eye, which brings her to 20/80 in the left and 20/300 in the right.  He also noticed that her eye is MUCH straighter with her new glasses.  He checked out the glasses and then looked at her eyes.  He was impressed with how she is using her eyes and wanted to dilate her eyes just to double check that nothing had changed.  So before he put in the dilating drops, he tried to measure her pressures but she was crying way to hard. 

 

After her eyes were dilated he double checked her prescription and it hasn't changed at all.  She is steady at +6.00 in her left and +13.00 in her right.  We talked a lot about our options and he thinks that we should continue with the glasses for now.  Even though there is still a substantial difference between both eyes, it seems like she is trying to use them together and she is definitely seeing better in the glasses.  I asked if it would be better to go back to a contact in the right and keep the glasses on the left.  He said that he had thought of that too, but since her eye is staying so straight with the glasses, he wants to continue using those.  It seems that her visual system is trying to reach a state of "balance" with her left eye becoming a bit more farsighted as her right eye is decreasing.  He did predict that her left eye will always need correction - but I knew she would need glasses anyway, so that wasn't a big shocker.  He is going to run her information by the surgeon, just to get an opinion and see if he would do anything differently.

 

We also talked about the future.  He said that we will just take it one appointment at a time.  He said we will probably introduce bifocals around age 2 when she gets bigger glasses.  Right now he sets her focal point in her right eye at about 35 cm.  So anything farther than that is not in focus.  Bifocals will allow her to see both near and far since the lack of natural lens prohibits her from doing that adjustment on her own.  He also said that we may do the IOL at age 2, but that if her eyes continue the way they have been, she may not need the IOL!  If her prescription in both eyes ends up pretty close in numbers, the IOL will actually cause more problems by correcting the right eye while the left is still needing lenses.  I told him that would be great - that I wanted to wait as long as possible anyway for the IOL.

 

The only bummer is that we are starting patching again.  I expected this, but I am nervous about her wearing glasses and a patch.  We are patching 2 hours a day.

 

So overall, this has been the best appointment!  I always am so anxious and wound up going these appointments and have learned to anticipate bad news.  So it was great to get some good news and feel positive about the future!

 

 

 

Not following the rules

It is mid-week, so I don't have time to upload any pics or anything.  But I need to unload/vent a little so I figured I'd give everyone an update.

If you remember, we had a crummy visual acuity test a month ago.  20/400 in the right and 20/100 in the left.  Doc was surprised, so we went back today for a follow up.  After lots of looking, dilation, and more looking - the verdict is in.

Julia's left eye is getting worse and her right eye is getting better.  Go figure.  It isn't "worse" and "better" in the normal sense, but I am not sure how else to describe it.  Basically, her left eye was a bit farsighted, but not anything out of the ordinary for an infant.  It was around 4.75 in June.  In July, during her EUA, it measured 3.75, so the doc figured she was growing out of it.  Today it measured 5.75.  Her right eye's prescription has decreased to around 13.00 and we started somewhere around 25.00 in January.

The doc is actually puzzled.  He has never had this happen and said that in all the books on refraction development, it does not describe this scenario.  It is almost as if the eyes are trying to "equalize" and meet at the same prescription.  Yet that really isn't possible when they are so far apart.  He took a long time to try and explain what "normally" happens and what is happening in Julia.  We talked about the nystagmus and the strabismus as well. 

The good news is that she is trying to use both eyes together and may be able to develop some binocular vision.  That is encouraging.

So for now, we are ditching the contacts.  Well, we will ditch them when her new glasses come in.  Doc wants us to try glasses with the correct prescription for each eye.  Since her prescription in each eye is getting closer together, he thinks the glasses may be a good option.  Hopefully with correction her eye turn will get a bit better, along with the head tilt.  He gave me the option of getting bifocals for her aphakic eye, but we thought it would be better to get her used to glasses first, before we add in the bifocal.  We are also going to stop patching with the new glasses.  We see him in one month to check acuity and everything again to see what we need to do next.  He also is going to share his findings with her other doc to see if he has any other suggestions.  I think my daughter has really stumped him!  This is a little scary as I just want her to develop "normal" vision and follow the "normal" path for kids with cataracts, but she just can't seem to do that. 

I will admit, I was a bit stunned and overwhelmed with the appointment today.  We just can't seem to go to an appointment and just have a "you look great - keep going" as the result.  I guess I just want answers and want to see into the future and make sure this all turns out okay.  Now I just have to figure out how to keep glasses on her.  I guess it can't be any worse than keeping on the patch.

And I can't believe she is turning one in less than two weeks!  Where has the time gone?