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!

 

 

 

Functional vision assessment

Julia had her functional vision assessment yesterday.  It was done by a vision specialist from Delta Gamma Center for Vision Impairments.  This is a local non-profit that provides all kinds of awesome services for kids with vision impairments and blindness.  Delta Gamma works with First Steps, which is the early intervention agency for our state.  Julia has been receiving services from First Steps since she was 3 months old due to her vision issues.  Until now, she could not receive services from Delta Gamma because you have to have low vision in both eyes to qualify.  So she received OT from a therapist that specialized in low vision, but didn't work for Delta Gamma.  When we received the results of her acuity testing, her case manager from First Steps put a request into Delta Gamma.  Her doctor agreed that an assessment would be a good idea, and so that brings us to yesterday.

Lindsay came to our house and basically "played" with Julia for over an hour.  She did simple things like placing bright colored objects at different levels and in different places to see if she would scan the room vertically and horizontally.  She watched her try to put things into boxes and take them out.  She tried to get her to track objects.  She took objects from behind her and moved them around to the front to see when she would see them in her peripheral vision.

Overall, Julia did really well.  I do think her new glasses are really helping her see better.  Lindsay noticed that her eye still does turn when she is focusing on things and she did see the nystagmus.  Julia's head tilt hasn't gone away with the glasses either.  Lindsay's recommendation is that Julia be placed on "monitor" status, which means she won't receive direct services from a vision specialist, but will be assessed quarterly to make sure she is developing as she should.  Her concern was that as she grows, she may struggle with print, pictures and other smaller items that kids look at as they grow out of toddlerhood.

Her biggest concerns were that Julia can't see things when there isn't a contrast.  For example, when working with the big duplo blocks, if the base is green, she won't pull up any of the green blocks.  She can't see that they are there because of her lack of depth perception and her poor vision.  But she will pull up the yellow blocks.  She also was concerned about her vision on the right side.  She really didn't turn to look at anything when Lindsay brought it around her right side.  She encouraged me to try putting things on Julia's right to force her to look that direction, even if it means turning her body.  She doesn't want her to get into the habit of not looking to the right since she can't see well out of that eye.  But other than that, Lindsay feels she is behaving like an average one year old!  Hurray!

The other great information I got from Lindsay was a recommendation for a different optical shop that carries miraflex and offers really good deals (apparently they do buy one/get one free so you can have one pair of glasses and one pair of prescription sunglasses!).  We did not have a good experience with the optical shop that made her current glasses (why would you recommend wire frames to an infant is beyond me) but I didn't know what other shop would carry miraflex.  Apparently we aren't the first family she has worked with that has had problems with that shop and she too was perplexed at why they are so adamant that people not use miraflex frames.  So the next time we need new lenses or frames, we will be going to this new shop.

I will get a full write up from Delta Gamma of the assessment, and we will have to have another meeting to re-write her IFSP to include the monitor status (as a special ed teacher, I knew that we would end up with another meeting and more paperwork - I'm just glad I'm not the one writing it!).

So for now, Julia receives monthly visits from her occupational therapist.  She will have quarterly visits with Delta Gamma.  I have monthly visits with Missouri School for the Blind through a program called MOSpin, which is an educational program for parents of children with vision impairments.  And we also see Parents as Teachers a few times a year.  It sounds like a lot, but really, it isn't much.  And it is worth it to make sure that Julia gets all the help that she needs.

So for now we are waiting for her new miraflex glasses to come in and we see her eye doctor on Nov. 1st for a repeat acuity test (Cardiff acuity test) to see if the glasses are helping her vision.  We will also see if we are keeping the glasses for the right eye or going back to a contact and where we are going with patching.

Birthday

Can you believe this...

Has grown up into this?

 

My baby is one year old.  Where did the time go?  I feel like time has moved ever so slowly as we have tackled contacts, surgeries, patches, glasses and doctor appointments.  Yet it has gone so quickly.  I feel like I blinked and my baby is grown. 

 

Julia is definitely my high maintenance diva.  She was high maintenance even before the "eye" issues started.  We dealt with reflux (she screamed for four months straight), RSV, pneumonia and then the Eye...and through it all, she has grown, developed and melted my heart with every smile, giggle, babble.

 

We had an awesome party for her.  Just the family, celebrating her birthday.  Here are the highlights.

 

The "Julia" wall  - pics from every month.

 

Presents!

 

Cake!

 

It was a great day.  I think every mom reflects on labor/delivery/birth when a birthday rolls around.  Makes you a bit nostalgic and teary. 

 

On a side note, Julia is having a functional vision assessment tomorrow with First Steps to see if she needs any vision services in addition to her occupational therapy.  I am thinking that she won't, since her new glasses really seem to help her see better.  Now if she would just keep them on for more than a few minutes! 

 

We just searched the house for an hour when we realized that Julia didn't have her glasses on.  I had been cleaning up the house and she was following me around.  I looked down and she didn't have her glasses.  We looked, and looked and looked.  I felt like we were back to our "contact days" of searching.  Down on our hands and knees around the whole house.  Couldn't find them.  I was ready to cry.  We just had new lenses put in these glasses.  We have a pair of miraflex ordered, but they aren't in yet, and I knew we couldn't have the assessment tomorrow without the glasses.  Finally found them.  Guess where...in the fridge!  She must have slipped them in the bottom shelf while I was putting things away from lunch.  Seriously - I love this girl, but she is definitely making me go grey!

 

Keep us in your thoughts for the assessment tomorrow and then again on Nov. 1st when we do another Cardiff acuity test and see the eye doc again to decide what the next step is for Julia!

 

Oh...and Jed hasn't had an accident in almost a week!  I think my baby boy is almost potty trained.  He isn't a baby anymore, he looks like a little person now.