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!

Another appointment...another surgery

Yes folks, it is true.  Julia is having another surgery.  This is her third eye surgery and her fourth time under anesthetic.  One time under anesthetic was an EUA (exam under anesthesia) and ear tubes.  That doesn't count as surgery, or does it?  Heck, I am counting it.  My brave girl has been through too much.  She deserves every badge of honor she can get.

So here is what happened.

A few weeks ago, I noticed that her right eye was starting to turn in again.  I would stare and stare and try to get her to look straight at me to see if it would turn.  I convinced myself that I was just being a neurotic imom.  Then when our daycare provider mentioned that she had seen her eye turn, I knew I wasn't being neurotic.

So I called her normal eye doc.  The call I got back from the nurse was that he would feel more comfortable if I saw the doc that did her surgeries.  That makes you feel good, doesn't it?

So we went.  We saw an eye muscle specialist and then the surgeon.  The consensus was that it was time for eye muscle surgery (strabismus surgery). 

Insert imom freak out right here.

I have this bad habit of not panicking until I leave the doctor's office and stew on the info for about 24 hours.  I think in the office I am just shell shocked at hearing she needs surgery and can't even think of what questions to ask.  So I followed up with an email to her regular eye doc (who assured me that her surgeon is awesome and talented and he trusts him) and then called the nurse to ask a few more questions.

Now I am satisfied that she needs the surgery and it is the right time, just nervous about my baby going through this again.

You see, the other surgeries she was 9 weeks, 5 1/2 months and 9 months.  So I just handed her over.  She wasn't really clingy yet.  Don't get me wrong.  It is still amazingly hard to hand over your baby knowing that she is going under anesthetic.  But, I know this time she will freak out.  Hopefully I can walk her back so she isn't traumatized by being carried away by a nurse.

I am also happy that the recovery for this surgery doesn't require an eye shield or intense drops.  That is a relief.

So she is scheduled for Feb. 5th.  We will go the week before for new measurements (they measure the degree of turn to know how much to adjust the eye muscles).

I have already decided that she needs new pj's and a new lovey for surgery day.  She deserves something for going through all this craziness.  She may not understand presents, but I know she will like a new, soft lovey.

After surgery she will get checked for a new prescription and probably get new glasses.  And we will keep patching and patching.  (hopefully we will leave patching hell soon)

So mark your calendars and say a prayer for us on Feb. 5th.  And afterwards she will look straight at me with both eyes!

Can you tell I am trying to be the "positive, I'm not scared at all" Mom?  I may be keeping it together outside, but inside I am terrified.

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?

And the results are in

And they are not what we expected.  I knew that Julia's right eye would not have "normal" vision.  I expected a number like 20/200 (which is legally blind).  I had steeled myself to hear that and be okay.  I figured the left eye would come in somewhere at 20/40 or so.  Her left eye is a bit farsighted, but at the last appointment we decided to wait on glasses because we were hoping she would grow out of it.  So I finally got a call with the numbers and...



20/400 in the right eye

20/100 in the left eye

I was stunned.  I had never expected her left eye to be that impaired.  We are counting on her left eye to be strong and healthy so that if we never attained good vision with the right, well, we could count on the left.  Now her "sound" eye (as the doc calls it) isn't seeming so sound.

Even the doc was surprised, which sparked great anxiety in me.  I didn't understand how my baby's vision is so terrible but she runs around like a maniac!

To make matters worse, we had a terrible incident with her on Sunday.  Jed accidentally ran into her and she fell straight back onto her head.  She immediately started screaming, but when I picked her up, she stopped.  I figured she had calmed down, but when I looked at her, her head was tilted back and she wasn't breathing.  Her eyes rolled back in her head and she went limp.  James started screaming her name and I froze.  After blowing in her face and even puffing air into her mouth, she started screaming.  She cried and cried, but was lethargic and sleepy.  So we immediately went to the ER.  Of course, by the time we got there, she was acting completely normal.  Docs said that she probably was so stunned that she tried to take a long, deep inhale but got "stuck" and held her breath.  She didn't have a concussion or anything so we came home.  It was the scariest moment of my life.  Scarier than handing over my baby to a surgeon, scarier than learning about phpv and cataracts, scarier than anything I have ever experienced.  I keep seeing her image in my face and it tears me up every time.  I thought I was going to lose my baby in that moment, and it was too much.  I couldn't take it.

Well, that incident, on top of the new vision information has set my anxiety on edge.  I am by nature an anxious person and always feel better if I can "do" something or "fix" it.  Well, I can't fix this and it makes me crazy.  I'm walking around with a ball of nerves in my stomach feeling like I am constantly filled with adrenalin.  It is a horrible feeling and I'm not sure what to do (short of becoming a zombie on a ton of anxiety meds!)  So I text some imoms and realize I'm not alone.  Read some other blogs and know that other families are facing the same challenges.  Talk to my husband and my mom and accept that I am a great mom that is taking care of her baby in the best way she can.

So, after emails with the doc, contacting First Steps about more vision services, and lots of tears - I have done all I can.  We are seeing the doc Oct. 2nd (perhaps earlier - he told me to call his nurse to get squeezed in) and he is going to do the Cardiff test himself to make sure the numbers are right.  And we will go from there.  He is also going to go over the results with the surgeon to see if/when we should do the strabismus surgery.

There is a bit of good news though.  The fabulous nurse, Tracy, from the Eye Clinic called and said that Julia's back up contact was in.  The company sent a three pack (so we have three back ups!) and the cost is only 90 dollars for all three!  I don't know if this is an apology for messing up so many lenses or their normal bulk price, but it is great.  I can't figure out how one lens is 150 and three are 90, but whatever.  Maybe they made a few extra and since they are custom and don't really sell that size they are discounting it.  Who cares - I get cheaper lenses!  But wait, it gets better...



The doc emailed me and he spoke with our insurance and they are approving the lens!  So I am getting three lenses at no cost.  That made my day.  Gave me just enough boost to keep going.  So we will get up tomorrow, put the contact in, collect our patches, and go about our day.  One day, one patch, one contact at a time...we will do this.