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. 



 



Glasses

Julia's glasses have arrived.  I'm not going to say that it has been easy, but "fingers crossed" she is adapting well.  She still will take them off her face if she is not playing or she is tired, but it is going better than I've expected.

 

And the best thing is - I really think she can see better with these glasses.  She is grabbing for my face when she looks at me like she can actually see my face.  It brings tears to my eyes to watch her stare at things because I really think she is seeing more detail than she ever has.  I am praying that she is using both eyes together too.  We head back to the doc on Nov. 2 to see how her acuity is and how things are going with the glasses.  So right now I am just enjoying no patches (yeah!) and no contact (yeah!).  Here are some of the things I won't miss this month:

 

 

 

 

She is trying to get a cracker in her mouth while wearing mittens!

 

And now, just for fun...a few pics of our life.

 

Glow sticks in the tub with the lights off.  Try it - so fun!

 

Here is what it looked like with the lights on!

 

 

Setting up his microphone.

 

Singing!

 

And can you believe it - Julia's birthday party is tomorrow!  My beautiful baby is going to turn one on Monday.  It is definitely bittersweet.  I'll post pics of the party as soon as I can.

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?