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!

IFSP and snowdays

This blog is a little overdue.  I am a bit jealous of some other imom's that seem to find the time to blog a bit more often than I.  Not sure how they find the time - they must be superhuman superwoman supermoms.  I struggle to just get laundry done, dishes washed and kids bathed!  Someday I'll figure all this out.

Over Christmas break we had one day of snow.  Jed hasn't really been able to play in the snow, so this was his first opportunity to go outside and go sledding.  He was thrilled and kept saying, "I love playin in the 'no."  We went down the hill in the back yard over and over and he quickly realized that he would go a lot faster if I rode with him (I didn't tell him that it is because I weigh 5 times as much as he does!).

The snow only lasted a day - but it was sure fun while it was there!

 

 

If you look close int he pic above, you can see Julia photobombing.  And the wooden sign is a Christmas present from my hubby.  I've wanted one for ages so he found a place that makes them and drove 2 hours to get it and surprise me.  I love him.

 

Just an update on Jed.  I know I focus a ton on Julia -since her eye is why this blog started in the first place - but Jed is too awesome to leave out. 

 

He has started talking.  A lot.  Like never stops.  He comments on everything and his vocabulary amazes me.  He is potty trained (almost night trained too) and I am so proud of him.  I love when I ask him to do something and he says, "All right" in his little voice.  Every morning when we are leaving for daycare he makes me roll down the window so he can say good bye to Daddy. 

 

James says, "Bye Jed."

 

"Bye, Daddy."

 

"I love you Jed."

 

"I love you too Daddy."

 

Melts my heart every morning.

 

He is very polite.  Always says please and thank you and is quick to say, "Nice job, Mommy!" when I do anything remotely good.  He is starting to be more independent and wants to play in his room with his toys.  But he doesn't want to go alone - he wants Julia to play with him.  He really loves his little sister, he just sometimes hugs too hard. 

 

As for Julia, we just had her IFSP meeting.  These are the meetings we have every 6 months with First Steps (early intervention) to review her goals and services.  I got a little teary when we looked back at some of her goals.  I remember when her goals were to sit up on her own and to take a bottle faster.  Now she is working on being more confident in unfamiliar situations, scanning horizontally and vertically, using her peripheral vision and speech.

 

 

Right now she is doing great.  She will stop at a crack in the driveway because she can't tell if it is a step or just a crack.  But that is good!  At least she doesn't just step over everything - that could be dangerous since she doesn't have depth perception.  She is starting to try to use a fork and is completely off bottles.  She doesn't really do any pretend play, but she will dump out the buckets of play food and follow her brother around.  We are continuing vision services once a month and OT once a month.  We meet again in 6 months and will go over goals again and possible add in speech therapy.  She isn't really saying any words yet, but I'm not concerned yet.  She obviously understands things that we say to her, she just hasn't started talking.  The OT wants us to ditch the binky.  I'm not thrilled about it, but I understand her reasoning.  I told her we weren't going to attempt that until after surgery in a few weeks.

 

I found out that since she is in First Steps she qualifies for a 2 hour a week preschool program at United Services when she turns 18 months.  I'll need to find transportation there and back since it is during my work hours, but I am excited for her to be working with teachers and around other kids her age, even if it is only for a short time each week. 

 

 

I look at my little girl and realize that she is turning into a little person - she isn't a baby anymore.  That is a very sad thing, but also an awesome thing.  When I see all that she can do and remember all that she has overcome, I am very proud.

 

I'm nervous about her upcoming surgery.  I know it is necessary and I will be happy when her eyes are straight, but I am ready to have it over with.  I am just praying it will help with her head tilt too.  It has gotten more noticeable that she tilts her head to the left to see.

 

This is the "I didn't get my way" face.

 

 

So things are trucking along in our household.  I know she doesn't have her glasses on in these pics, but usually by evening, she is done with the glasses and won't wear them.  It happens every night when she starts to get tired.  I probably should force her to wear them, but I figure that after a long day of patching and wearing them, her eyes are probably tired.

 

So keep us in your prayers.  We see the doc for new measurements (of her eye turn) on Jan. 29 and then surgery in Feb. 5th.

 

And just for fun...

 

 





 







 

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.

Christmas

Christmas was awesome.  I love the holidays and giving gifts.  Both kids were super excited with their presents and had a great time.  The only hard part was that things were VERY busy.  I worked through Friday and then Saturday Julia had appointments with her OT and vision specialist (she gets vision services now - I'll have to update on that soon).  And I had to finish wrapping.  James was off hunting all day Saturday, so I was at it alone with both kids.  The good news is that he got a buck so we have more meat in the freezer.

Sunday was church and getting food for Christmas.

Monday I had to do some last minute shopping.   I don't recommend going to Wal-Mart on Christmas Eve.  Not a great idea, but I had to get some drinks and things for Christmas.

Christmas eve we always go to church.  I usually sing with the Christmas choir.  We have candles and sing Silent Night and everything is beautiful.  James got stuck in the nursery with the kids since they wouldn't sit through service.  Maybe next year.

Jed before church.

Julia before church.  I think she is trying to eat her hair bow.  And it has become almost impossible to get pics of them together.

 

After church we have dinner out with my family.  We went to a Japanese restaurant and it was awesome.  My family is very supportive and we do a lot of things together.  We all go to the same church every Sunday and have lunch together every Sunday.  It was wonderful seeing everyone dressed up and the little ones were so excited for Santa.

 

Jed trying to use chopsticks.

Julia trying to use chopsticks!

 

After dinner we went home and put the kids to bed.  Santa came and filled the tree with presents!

 

 

Christmas morning was wonderful.  Jed really understood Christmas this year and loved opening all his presents.  He was so excited.  Julia had fun too.  I think I had the most fun watching them open and be excited!

 

One of Jed's favorite gifts was his fishing pole.

Julia got a music set.  We are definitely gluttons for punishment.

Learning to fish!

Sibling love.

 

After presents, both the kids took a nap.  I snuggled with Jed before we had to go to my parent's for more presents and brunch.

 

 

 

We had brunch at my parent's house and got even more presents. Again, it was so fun watching the kids get so excited about everything.

 

Yes!

 

That evening we had James' family over for more presents.  I guess I was too busy with food and things because I didn't even snap any pictures.  Which is a bummer because the kids had fun with their cousins.

 

Now we are trying to get back to "normal."  We still have to patch and take naps and clean our rooms!  Unfortunately, Jed developed some sort of eye infection on Wednesday.  He got some antibiotic drops and so far (knock on wood) Julia hasn't caught it.  It actually cleared up pretty quickly.

 

Jed had to deal with drops for a change!

Still using the pedi wraps.  But she can still play with toys!

What's missing?  She is obviously a mini Houdini.

Drawing on the new easel.

Sharing!  See the new tool bench in the background?

Hold me Mommy!

 

 

Such a more relaxing Christmas this year.  Last year Julia had surgery on Dec. 22nd so the entire holiday was spent worrying about drops and going to follow up appointments and stressing out about having to wait to put in a contact.  Much better experience this year.

 

We have two more Christmas parties to go to and a New Year's Eve party.  Julia has an IFSP meeting in January to look at her early intervention goals.  And surgery is still scheduled for Feb. 5th.  It's back to work on January 2nd.  Merry Christmas everyone!

 

 

 

 





 



 

 

 





 



 

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

 

 

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.