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.

Thankful

HAPPY THANKSGIVING!

So lots of people are doing a "month of thankfulness" on facebook.  I wish I was that dedicated.  But after an awesome message at church on Sunday (thanks Pastor Phil) I do realize that I have a lot to be thankful for.  So here goes...in no particular order. 

I am thankful for:

1. coffee
2. DVR on the TV
3. internet
4. logic puzzles
5. bubble bath
6. warm beds
7. fun toys
8. applesauce in a pouch
9. glow sticks
10. pizza
11. sleep
12. bubbles
13. books
14. digital cameras
15. central heat/air conditioning.
16.  and much, much more

Now, I know some of those sound fluffy or irrelevant, but I really am thankful for all the little things that bring me joy.  As for the big things, sometimes words can't express your gratitude.

My husband - the caring, sweet, helpful man that he is.  He brought me out of my shell and showed me a world that I never knew existed.  I wasn't truly alive until I met him.

My kids - my beautiful, wonderful, smart kids.  They are my heart walking around on this planet.

My family - so supportive, helpful and loving.  I love that my sisters are more than sisters and are friends.  I love that I see my parents every week and can talk to them about everything.

Health - while we have definitely had our challenges, we are healthy.  My kids can run and play and jump.  And we have health insurance that helps with the surgeries, appointments, and contacts. 

My fellow imoms - they truly "get it."  I am amazed that I have been able to connect with a little community of moms that are experiencing the same cataract journey.  Between camopatchsunday and the instragram conversations, I know I am not alone. 

I have so much to be thankful for.  I really do have a wonderful life.  There are lots of ups and downs - we've had good times and bad - but we really are blessed. 

And I am thankful that I have figured out the easiest, fastest, least painful way to let my kids visit Santa.  Before you enjoy your Thanksgiving dinner, just hit Bass Pro.  They are open on Thanksgiving, and since everyone else is scarfing down turkey, it was empty!  This is the second time we have done this, and it is awesome.

And besides seeing Santa (which Julia refused to do), they have a whole kids area.  And you get a free 4x6 pic with Santa!  Jed was able to do every activity that was there, with no waiting! 

First he rode the carousel.

Then he shot the rifles (don't worry, they were laser).

This is what Julia did while Jed had fun.

Driving the remote control monster truck.

 

I hope everyone had a wonderful Thanksgiving!

 

 

 

Pumpkins and Patches

So Halloween has come and gone, and we had a great time.  We went to the pumpkin patch last weekend and picked our pumpkins.  They were carved and put on the porch.  And for Halloween, we went trick or treating and enjoyed a lot of chocolate!

At the pumpkin patch!

Jed rode the pony!

Picking a pumpkin.

Jed with the pumpkins.

Scooping out the guts.

Carving pumpkins.

Jed was Tigger.

Julia was a pumpkin (for about 5 minutes)

Finished product!

 

 

 

And now that the festivities are over, it is time to head back to reality.  We've been having a bit of a rough time with Julia and her glasses.  I was convinced that she could see better with them on, but I just couldn't convince her of that fact!  We were having trouble keeping them on her face.

 

I love my glasses right now!

 

Eventually, she took them off and broke them.  If you notice in the pumpkin patch pics, she isn't wearing glasses because they were broken.

 

Definitely broken.

 

When she broke them the first time, we went ahead and ordered her some miraflex glasses.  Good thing we did because a couple weeks later she really broke her glasses!  The miraflex actually arrived the next day so we went and picked them up.

 



My new specs!

 

We still have trouble keeping them on, but she wears them more than she would wear the wire frames.

 

They are on...

And they are off!

 

 

Julia saw her eye doctor on Nov. 1st.  First we did the Cardiff test to check her acuity.  She didn't enjoy being patched for the test, but she seemed to respond to the cards.

 

Then we visited with Dr. Hoekel.  He said that her acuity was better - one line better in each eye, which brings her to 20/80 in the left and 20/300 in the right.  He also noticed that her eye is MUCH straighter with her new glasses.  He checked out the glasses and then looked at her eyes.  He was impressed with how she is using her eyes and wanted to dilate her eyes just to double check that nothing had changed.  So before he put in the dilating drops, he tried to measure her pressures but she was crying way to hard. 

 

After her eyes were dilated he double checked her prescription and it hasn't changed at all.  She is steady at +6.00 in her left and +13.00 in her right.  We talked a lot about our options and he thinks that we should continue with the glasses for now.  Even though there is still a substantial difference between both eyes, it seems like she is trying to use them together and she is definitely seeing better in the glasses.  I asked if it would be better to go back to a contact in the right and keep the glasses on the left.  He said that he had thought of that too, but since her eye is staying so straight with the glasses, he wants to continue using those.  It seems that her visual system is trying to reach a state of "balance" with her left eye becoming a bit more farsighted as her right eye is decreasing.  He did predict that her left eye will always need correction - but I knew she would need glasses anyway, so that wasn't a big shocker.  He is going to run her information by the surgeon, just to get an opinion and see if he would do anything differently.

 

We also talked about the future.  He said that we will just take it one appointment at a time.  He said we will probably introduce bifocals around age 2 when she gets bigger glasses.  Right now he sets her focal point in her right eye at about 35 cm.  So anything farther than that is not in focus.  Bifocals will allow her to see both near and far since the lack of natural lens prohibits her from doing that adjustment on her own.  He also said that we may do the IOL at age 2, but that if her eyes continue the way they have been, she may not need the IOL!  If her prescription in both eyes ends up pretty close in numbers, the IOL will actually cause more problems by correcting the right eye while the left is still needing lenses.  I told him that would be great - that I wanted to wait as long as possible anyway for the IOL.

 

The only bummer is that we are starting patching again.  I expected this, but I am nervous about her wearing glasses and a patch.  We are patching 2 hours a day.

 

So overall, this has been the best appointment!  I always am so anxious and wound up going these appointments and have learned to anticipate bad news.  So it was great to get some good news and feel positive about the future!

 

 

 

Functional vision assessment

Julia had her functional vision assessment yesterday.  It was done by a vision specialist from Delta Gamma Center for Vision Impairments.  This is a local non-profit that provides all kinds of awesome services for kids with vision impairments and blindness.  Delta Gamma works with First Steps, which is the early intervention agency for our state.  Julia has been receiving services from First Steps since she was 3 months old due to her vision issues.  Until now, she could not receive services from Delta Gamma because you have to have low vision in both eyes to qualify.  So she received OT from a therapist that specialized in low vision, but didn't work for Delta Gamma.  When we received the results of her acuity testing, her case manager from First Steps put a request into Delta Gamma.  Her doctor agreed that an assessment would be a good idea, and so that brings us to yesterday.

Lindsay came to our house and basically "played" with Julia for over an hour.  She did simple things like placing bright colored objects at different levels and in different places to see if she would scan the room vertically and horizontally.  She watched her try to put things into boxes and take them out.  She tried to get her to track objects.  She took objects from behind her and moved them around to the front to see when she would see them in her peripheral vision.

Overall, Julia did really well.  I do think her new glasses are really helping her see better.  Lindsay noticed that her eye still does turn when she is focusing on things and she did see the nystagmus.  Julia's head tilt hasn't gone away with the glasses either.  Lindsay's recommendation is that Julia be placed on "monitor" status, which means she won't receive direct services from a vision specialist, but will be assessed quarterly to make sure she is developing as she should.  Her concern was that as she grows, she may struggle with print, pictures and other smaller items that kids look at as they grow out of toddlerhood.

Her biggest concerns were that Julia can't see things when there isn't a contrast.  For example, when working with the big duplo blocks, if the base is green, she won't pull up any of the green blocks.  She can't see that they are there because of her lack of depth perception and her poor vision.  But she will pull up the yellow blocks.  She also was concerned about her vision on the right side.  She really didn't turn to look at anything when Lindsay brought it around her right side.  She encouraged me to try putting things on Julia's right to force her to look that direction, even if it means turning her body.  She doesn't want her to get into the habit of not looking to the right since she can't see well out of that eye.  But other than that, Lindsay feels she is behaving like an average one year old!  Hurray!

The other great information I got from Lindsay was a recommendation for a different optical shop that carries miraflex and offers really good deals (apparently they do buy one/get one free so you can have one pair of glasses and one pair of prescription sunglasses!).  We did not have a good experience with the optical shop that made her current glasses (why would you recommend wire frames to an infant is beyond me) but I didn't know what other shop would carry miraflex.  Apparently we aren't the first family she has worked with that has had problems with that shop and she too was perplexed at why they are so adamant that people not use miraflex frames.  So the next time we need new lenses or frames, we will be going to this new shop.

I will get a full write up from Delta Gamma of the assessment, and we will have to have another meeting to re-write her IFSP to include the monitor status (as a special ed teacher, I knew that we would end up with another meeting and more paperwork - I'm just glad I'm not the one writing it!).

So for now, Julia receives monthly visits from her occupational therapist.  She will have quarterly visits with Delta Gamma.  I have monthly visits with Missouri School for the Blind through a program called MOSpin, which is an educational program for parents of children with vision impairments.  And we also see Parents as Teachers a few times a year.  It sounds like a lot, but really, it isn't much.  And it is worth it to make sure that Julia gets all the help that she needs.

So for now we are waiting for her new miraflex glasses to come in and we see her eye doctor on Nov. 1st for a repeat acuity test (Cardiff acuity test) to see if the glasses are helping her vision.  We will also see if we are keeping the glasses for the right eye or going back to a contact and where we are going with patching.

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.