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!

EYE will not give up

I sometimes feel like throwing in the towel.  Patching is hard.  Watching your baby struggle is torture.  The constant eye doctor visits, the glasses, the patches, all of it.  I honestly sometimes want to throw in the towel and call it quits.  She has enough vision, right?  Is she really going to see more if we keep patching?  ACK!

We just saw the eye doctor yesterday, and it wasn't great news.  Another surgery is planned.  This time to correct the muscles (again).  Except now the eye is floating upward instead of inward.  They also will do an exam under anesthesia (EUA) while she is under anesthetic.  They want to get a good measure of her eye pressures.  Her prescription keeps changing so drastically that they want to make sure it is not glaucoma causing the growth.  This is surgery number 5 for my little champion.  It is so disheartening and it gets frustrating to feel like you are constantly getting bad news when you go to the eye doctor.  I am looking forward to the day when Dr. Hoekel says, "You can stop patching now!  Those years of frustration, the tears, the bribes have all paid off and your daughter can see!"  That is my prayer.  I want to hear that sentence one day.

Thankfully, our ophthalmologist and optometrist are great.  They are really supportive and encouraging.  But I admit, I was holding back the tears on the drive home.  It just gets so tiring, you know?  It just feels like it is one thing after another and my little girl can't seem to catch a break.

Don't get me wrong.  I count my blessings everyday.  I have two beautiful children that are healthy and happy.  I have supportive family and a wonderful husband.  But I still wish I didn't have this battle to fight.  I don't want to hand my baby off to a nurse (again) for a surgery.  I don't.

The good news is that Julia was able to finally read the Allen chart and identify the car, horse, cake, etc.  This is the first really good measurement we have had of her vision.  She has done the Cardiff test before, but that is a preferential test, so it isn't completely accurate.  She was able to read the 20/60 line with her left eye and 20/160 with her right.  Her prescription changed again, so we are getting new lenses for her glasses.  She was so brave and so good!  She sat calmly and let the doctors look in her eye, shine lights in her eye, everything!  6 months ago, we were holding her down and prying open her eyes for the exam.  She is growing up (sniff, sniff).

So I guess I won't give up.  We will keep patching, keep trudging on, keep trying to improve her vision.  In my head I know that it will be worth it in the end, my heart just doesn't feel it right now.

Thankfully surgery isn't scheduled until after Christmas.  So we are going to enjoy the holiday.  Good thing I ordered some Christmas themed patches!

Surgery, Slides, and Sickness

Nope, those things have no specific relationship other than they have been my last few weeks.  So lets tackle them one at a time.

SURGERY

New "lovey" for the hospital (thanks Grandma Joan).

It is over!  The doc had a cancellation so they bumped up Julia's surgery. It really was a blessing.  Less time to fret and be anxious.  They called on Tuesday and said there was an opening on Thursday.  So we made arrangements and phone calls and got ourselves ready.

Eyes before the surgery.

Had to be at the Hospital at 6:15 am.  Julia was great until they tried to put the hospital bracelet on.  She wailed.  She did not want to be touched at all.  I knew then that it was going to be a long day.  She got into the gown, we talked to a ton of different people (and answered the same questions over and over) and then the time came for her to go back for surgery.

Chillin with Daddy and waiting to get started.

They had given her some versed (not sure if that is spelled right) so she was a little loopy, but not loopy enough to just go to a stranger.  So I walked her to the OR doors and handed her over.  Then as I walked away I could hear her crying as they walked in.  So of course I teared up and then when I got back to the room, James was teary as well.

Waiting to go back for surgery.

Surgery was about an hour and the surgeon came in and said everything went fine.  He also took measurements for an IOL and said we could move forward with that in a few months.  I'm waiting for the Dr. H to talk with the Surgeon to develop a more definite plan.  We have an appointment scheduled in 8 weeks to see Dr. H and figure things out.

We finally got to go back to recovery and get my baby!  She was inconsolable.  She does not come out of anesthesia well and we have dealt with this every time.  This time she was strong enough to try to rip out her IV and heart monitor leads.  She needed some meds to calm down and then we were finally able to go back to our room.  After an hour of cuddles, we got the IV out, got dressed and came home. 

 Tired

 Thirsty.

Sleepy. 

Snuggly.

 

 She slept all afternoon and then was back to her usual self!  She ate a big dinner and ran around with her brother.  It was seriously the easiest of all our surgery recoveries.  And her eyes are so straight.  She looks amazing!

Eyes after surgery!  So straight!

SLIDES

This weekend (yes, just a few days after surgery) was the birthday party for my niece and nephew.  It was at this place called Jump4Fun.  We actually had Jed's 2nd birthday party there.  Doc had said that Julia had no restrictions, so we just let her have fun!  Jed had a blast and probably would have played there all day if we could have.  Julia was hesitant, but then enjoyed climbing up the slides.  She didn't enjoy going down them as much as she did climbing up.

 

 

 

 

 

 

 

 Yes, every pose from Jed is a different time down the slide.

SICKNESS

And a bug has hit our house.  Julia has an ear infection, so we saw the doc yesterday for some antibiotics.  We had been treating it for 6 days with antibiotic drops, but it hadn't cleared, so she needed something stronger.  Thank God for ear tubes.  I can't imagine how much pain she would have been in without the tubes.  If the gunk flowing out of her ears was any indication, she would have been miserable.

Waiting for the doc.

Still waiting.

Literally, I got home from being at the doc with Julia, and James told me that Jed had been throwing up.  He puked several times last evening and once in the middle of the night.  So I kept him home from daycare and we have been cuddling today.  He hasn't been sick today, just tired, so hopefully it was a short-lived virus. (I'll save you from a pic of a puking kid.)

And the reason I was able to write this post is because I am sitting at home with a sleeping boy!  So there are positives to everything.

So now we are waiting to discuss the implant, have another dilation/refraction and hopefully Cardiff test to see where her acuity is.  In the meantime, we are just plugging along (we need to start planning for Jed's birthday (how can my boy be turning 3!), looking toward summer, and of course saving up for OeyeO!

 Eye is straight - even when patched!

Vision specialist

So with the holidays and everything, I never updated on what happened after the functional vision assessment that Julia had.  When the specialist came to the house, she "played" with Julia and then told me that she recommended that Julia be checked quarterly.  This meant that she would be on "monitor" status.  I am very familiar with "monitor" status because I teach special ed.  In high school, if you are on monitor status, you will be dropped from services after a semester if you don't need the
extra help anymore.

Well, the vision specialist (she works for Delta Gamma), the occupational therapist, and Julia's case manager came to the house to review the functional vision assessment.  There was a lot of discussion and I contributed as much as I could.  It again was very surreal to be the parent in this meeting and not the special education teacher.  The team decided that Julia does need vision services so the vision specialist will be coming to the house once a month to work with her on functional vision.  She also will still receive occupational therapy once a month as well.  The vision specialist/occupational therapist will be working on fine motor skills, scanning, and mobility, especially when it involves depth perception. 

We also talked about how hard it was to keep her glasses on.  At the time (this was back before Christmas) she was still hit or miss with keeping them on.  A goal was put in her IFSP about glasses.  The great news about this is that when she gets her next prescription, First Steps will pay for a set of glasses!  Hooray!  That is definitely great news since she will probably need a new pair shortly after surgery.  Now I won't have to just replace the lenses, but can get her new frames as well.

Some days I swear that Julia can see really well.  I wonder if it is the mom in me wanting the best for my daughter (can we say denial).  Like today, she was picking up nerf darts off the floor, and that was without her glasses!  Other times I notice that she has trouble.  She doesn't use her peripheral vision so she will trip over things on the floor and has a lot of trouble with steps.  She is very, very hesitant to let go of me in an unfamiliar setting. 

I have my moments where I wonder if she really needs these services. The normal person would never know that her vision isn't great.   But then the special educator in me reminds my nagging conscience that First Steps wouldn't have qualified her if she didn't need the help and that preventative services are always more successful than trying to catch up later.

So right now we are just patiently waiting for surgery day.  I had a little tearful moment today when Julia was in the tub.  Without her glasses on, you can really see her eyes.  They are definitely turning more hazel/brown colored.  I got a little sad because the pupil in her right eye is not centered in her eye.  It is small and a little oddly shaped.  My heart hurts for the future and Julia having heartache over being "different."  I love my little girl and she is absolutely perfect.  But not everyone sees the perfection that I see.  I see the courage, intelligence and sense of humor that she has.  I mean really, she takes eye drops like a champ (nothing like her brother - it is like wrestling a wet squid to get drops in his eyes), she has had more appointments than I can count and is about to have her fourth surgery.  She is a champ.  She is beautiful.  She is my Julie-bean.

What a difference a year makes.

Exactly one year ago, on this day, I was sitting at my very first appointment at the pediatric opthamologist.  I knew something was terribly wrong with Julia's eye.  I could tell in the way the pediatrician had talked to us at her well-baby visit the evening before.

This is the day of the appointment.  I immediately noticed the cataract in the picture.

That day is pretty blurry, yet some things are crystal clear.  I remember what I was wearing (black pants/purple sweater) and what Julia was wearing (turquoise flower outfit).  Julia was amazing all day.  We were there for several hours doing several tests.  I was terrified that she would scream, because she had been screaming most of her short life.  But she didn't.  I think she just knew, in her baby wisdom, that this was a rough day for mommy and she was quiet the whole day.

I remember hearing the words "cataract, surgery, contact lens."  I know I asked what would happen if we didn't have surgery.  Getting the answer, "She will be blind in that eye," was not reassuring.  I remember the fellow explaining that the lens is shaped like an M&M and they were going to "suck" the chocolate out (that is the cataract) and I remember being told about a stalk.

Waiting for first surgery.

I actually didn't freak out until the next day.  Once I got on google and started doing some research, I realized that my daughter probably had phpv.  I realized we would be patching.  And I was terrified that this wouldn't work.  That my baby wouldn't see.  That her eye wouldn't grow and wouldn't develop.

And then we waited for surgery.

Which is ironic, because here we are again.  One year later, and we are again waiting for surgery.

We have been through 3 surgeries, countless patches, at least 10 contact lenses, 3 sets of glasses and probably 15 eye doctor appointments.  I've endured the stares, the comments, the snickers and laughs from strangers.  I've also experienced the support of wonderful imoms, friends and family. 

After second surgery.

Other imom's told me, "One day your life won't be consumed by the EYE."  I don't think I believed them.  But it has happened.  Her day is more about being an active toddler and less about the EYE.  Yes, she wears glasses.  And yes, she still patches.  But she also walks, climbs, plays with toys, and throws food off her highchair.  Don't get me wrong - the EYE is always there, in the back of my mind.  But I am learning to trust my mommy instinct and trust the doctors.

We lost a lot of these.

I can't believe it has been an entire year since we first learned about the EYE. 

This year was long, painful, wonderful and momentous.  It inched along like a turtle, yet flew by in an instant.

I never imagined this day would come.  A day where I finally feel like we are normal.  Just a little family, living life, enjoying one another, and sticking patches on an eye.

My little man.

My beautiful doll.

LOVE