Surgery, Snow and Sunshine!

It has been a long time since I have posted.  Life has been busy and hectic!  Work is overloading right now, and all the snow days have messed with all of our schedules.

Julia had her second strabismus surgery on Jan. 14th.  She was a trooper.  I was a mess.

She was happy as a clam with her new toys and scrubs.  They gave her some happy juice and she willingly went with the nurses.  She came out of anesthesia pretty well and we were home in a jiffy.  Honestly, I don't see a huge difference in alignment but am hoping that as the muscles "settle" things will straighten up.  I don't know if I am willing to do another surgery so I hope I don't have to face that decision.

As far as her eyes go, things are status quo.  We go for a low vision evaluation with Lighthouse for the Blind in March.  They will look at her functional vision and determine if there is any equipment (magnifiers, technology, etc) that she would need.  If there is any, they provide it free of charge, along with training. Once that eval is done, we will begin to prepare for transition to the school district and out of early intervention.  Right now she is seeing her vision instructor once a month and a speech therapist twice a month.  We will have to see what services the school district thinks she needs.

SNOW!!!  We have had so much snow - it has been overwhelming.  So far we have had 7 snow days.  

Several of the snow days were so very cold that we couldn't even head outside.  But when we could, we played in the snow.

Jed loves the snow.  Wants to play, dig and sled.  Julia is more like me.  She tolerates it for a few minutes, and then is ready to go in and have hot chocolate and watch cartoons.  The beauty of all the snow is that Julia is potty trained!  We were stuck at home for 5 days, so we just put on underwear and went for it!  She caught on quick, and is in underwear full time now.  Hurray for not having to buy diapers!

A lot of the month was trapped inside.  We did a lot of coloring, busy bags and any watched a lot of movies (my kids can recite all of Charlie and the Chocolate Factory and Mary Poppins.

Do you see what I see?

After several months of bitter cold and crazy snow, we have had a small heat wave! Jed has been begging to fly a kite, so Daddy got him one.  They were able to fly the kite on the deck yesterday afternoon.

Today it was really warm, so we decided to enjoy the sunshine and head to the park.  My kids have a lot of energy and maybe a touch of ADHD so any chance to run around outside is welcome.  They loved swinging, climbing and sliding.  Jed is fearless and will tackle any obstacle or playground equipment.  Julia is a bit more hesitant, but once she gets comfortable, she will run around with the best of them.

Of course, it is supposed to chill down again tomorrow, and flurries are in the forecast.  We probably won't get to the playground for another couple of months.  But we enjoyed it while we could!  Until the weather warms, we will enjoy the days inside!

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. 



 



Testing

Just a quick post.  It seems like I never have time to blog anymore now that school is back in session.  Mornings are crazy with getting ready, putting in Julia's contact, and loading kids into the car.  Afternoons are playing, cleaning, cooking, bathtime.  I wouldn't trade it for the world.

Julia had her first visit with the vision diagnostic tester.  It is sort of like an audiologist that does the fancy hearing tests, but this one was for vision.  We sat in this little plain room and she held up all kinds of cards for Julia to look at.  They were in sets of three - and it would have the same pic on each card, just in a different spot (top, middle, bottom).  The cards were gray and the pics were just white outline drawings.  Each set of three had a different pic (a train, fish, apple, etc).  I just held Julia while Jackie (the diagnostician) got her attention and kept going through all the cards.  We did her right eye, then her left, then her right again.  It was hard with her right eye because her nystagmus is really bad when she is patched (nystagmus is when her eye "jumps") and she has to really turn her head to get her eye in just the right spot to be able to see.

So how does this tell us anything about Julia's vision?

Apparently, the white outlines on the cards get thinner and thinner.  So at some point Julia is unable to distinguish the pic from the gray card and will stop looking at the pic or following it as it moves from top to bottom when she flips the card.  Pretty neat trick if you think about it.

Then Jackie got out a fancy camera and had me hold Julia's head straight to get some pics of her alignment.  She also took some pics with her natural gaze (with her head tilted).

So the info will all be sent to her surgeon and vision doc and we should have results in less than 2 weeks.  I am anxious to find out how much Julia can see.

In more fun news, we finally had Julia's baptism.  She looked so pretty!  My baby is getting so big.  And, I won't say this too loud, but Jed is doing really well with potty training.  Life is good here!

 

 

Happy Father's Day! (and some potty training too)

Happy Father's Day (belated) to all the Dads out there.  James is an amazing Father to Jed and Julia.  He is our protector, provider and brings fun to our lives on a daily basis.  Can't imagine life without him.

Dad sleeps while Jed plays.

Jed and Julia decided to make some "flowers" for Daddy for Father's Day.  (Really, I made them do it and they were not really thrilled with having paint on their hands and feet - but we got it done.)

This is about as creative as I get.

We had a quiet Father's Day at home - just spending time together.  On Monday we started the dreaded...Potty Training!  Yikes, it is tough.  We had tried a month ago and it was an epic fail.  Jed has been showing more signs of being ready so I figured I would give it another shot.

Potty training requires juice, towels and underwear!

I was a little worried about the carpet!

So it is going okay.  Having some accidents, but also going on the potty.  He is pretty excited about his Mickey Mouse underwear and getting a piece of candy when he goes.  I hope the excitement lasts long enough to get him fully trained!

This is what Julia was doing while we frantically ran to the potty every 15 minutes:



8 months is definitely not too old to nap in the swing!

So life is hectic but good.  Julia's contact is still popping out on a daily basis, but I am just trying to deal with it.  Her EUA is tentatively scheduled for Tuesday, June 26th.  She'll have tubes put in her ears during the procedure as well.  Other than that, we are just enjoying our summer!