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.