Patching really does work!

We have been patching Alayna's right eye for almost a year now.

Valentines Party at school

Her left eye has always been weaker but, today we had her three month ophthalmology appointment and the great news is her left eye is just slightly weaker now than her right.  Last appointment in the fall her left was showing 2 levels weaker!

Yahoo!   It has really changed in the last 3 months!

That darn patching is working!

I am thankful to the preK crew as they patch her while she is in school each day.  mwah!

The Dr. wants to continue patching her for the couple hours a day as her left is still lagging behind the right.

I did ask if she could predict how long we will be patching and she couldn't give me an estimate.  She said eyes continue to develop until around age 8 so we could be patching a minimal amount up until then.

For Alayna's sake I hope that the next three months show as much progress and we can either stop or decrease the amount of time she is in a patch per week.

the girls passing out their Valentines to their classmates

We hope you have a great Valentine's Day!

New glasses...finally!

At the end of October the girls had their yearly ophthalmology appointment.  Both were given new prescriptions for glasses and we headed out to the optical places that are covered under our insurance to get new glasses.

Dariya's first pair of glasses were from Specs 4 Us. However, after she tossed those into the lake during family pictures we opted to try a regular pair of glasses.  Unfortunately, her bridge is so flat that the glasses kept sliding down her nose.  So this year I was determined to go back to Specs 4 Us to get both  girls glasses.

Sounds easy right?

Wrong!  In the whole metro area of optical places that take our insurance we found one that wouldn't even come near the girls, some that wouldn't order the frames for us even though they could do it on a customer approval and would be out no money, one place bent over backwards to order the frames in for us, try them on the girls and size them up only to figure out they don't take our insurance.   The lady there felt so bad for giving us the wrong information she personally contacted other opticians that were on our insurance and gave them the information on how they could order the frames (she had done ALL the work) and help us all to no avail.

It took us over 2 weeks and contacting Maria Dellapina, the creator of Specs 4 Us to have her help us find an optical shop that takes our insurance and would work with us to order what we wanted.  Maria went out of her way to contact a place here locally and explain how they could order the glasses and not be out any money.   Honestly, if she wouldn't have called they weren't going to order them.

It was a hassle that I hope we won't have to redo next year as we now have hopefully streamlined the process with the optician we used and they were delightful to work with once all was said and done.

But, I think the final outcome is beautiful!!!

Post surgery opthalmology

Alayna had her follow up appointment with her ophthalmologist today.

Her eye is straight and very much in line now after surgery.  The doctor was very pleased with the surgery outcome.  However, Alayna is still favoring her right eye, albeit slightly over her left so we must continue with the dreaded patching everyday.  She has gotten out of the routine with our beach trip and all but refused to wear the patch last week for my mom while I had treatment.

Thankfully Alayna starts school next week and is usually very good about leaving the patch on during school hours which is plenty of time each day for her to wear it.

We will follow up with both girls at the end of October for their yearly vision checks.  Dariya's poor glasses are so out of shape they hardly fit her anymore.  Hopefully by then Alayna's brain will kick in and recognize that left eye so we can stop patching!

Surgery update

Pre surgery - playing with some little pet shop animals

Alayna did really well with surgery today.  The nurses were all smitten with her.
We were at the hospital about 5 hours total of which surgery lasted about 1 hour and 15 minutes.  She had an uneventful recovery and was discharged about an hour and a half post op.

Her eyes aren't as red as I thought they would be.  Hoping that doesn't get worse!

Once home she had a little lunch then took a nap.  She was in pretty good spirits and not in much pain until the Motrin wore off.  We could tell pretty quickly that her eyes were hurting as she kept covering them and trying to rub them.  Once she had another dose of Motrin she was ok again.   She had the usual clingy kid syndrome you get with a child that doesn't feel her best which is to be expected, otherwise we count today a huge success.

We have a follow up Monday to check that there is no infection.

We won't know for a couple weeks if the surgery was a success as it will take her brain a little while to process the new placement of her eyes.  For now we don't have to patch (and I am praying we never have to again!) #sodonewithpatches

Thank you for the prayers, we appreciate everyone of them.

Pre surgery physical, check

Today Alayna had her pre-surgery physical with her pediatrician.

It kind of seemed like a waste of time.  It was mostly information the doctor could check off and verify without seeing Alayna in person.  But, there were a few questions about her current health etc, the fact that we are rule followers and there will be NO eye muscle surgery if we didn't have this physical so off we went.

Of course, Alayna wooed our pediatrician by reading a book to her, telling her our phone number and address, and her birth date and age.

She was declared healthy and we got our golden ticket to have surgery next Friday!

We celebrated by having a swim party in the backyard.

Yes, we know how to party!  Who says you can't have fun in 3 inches of water?

We would love prayers for a great surgery and recovery for Alayna!  thanks!!!

Ophthalmology update

Alayna had her 8 week follow up with the ophthalmologist this week.  Unfortunately, the patching (read hold her down and super glue a patch on to keep it on) isn't helping much.  Her left eye is still tending to drift inward most of the time.

Therefore, we are opting for eye muscle surgery on June 21st.   At this point the doctor is planning on doing both her eyes (they work together like windshield wipers) however, she isn't ruling out just working on the left one.  It is a half day outpatient surgery in which the whites of her eyes will be very red for a few days to weeks afterwards but, not much pain, at least that is what I am praying for.

For now we keep patching each day for 5 hours, or as long as humanly possible to keep it on her. (You can tell I LOVE patching right?)

The doctor was pretty sure that she wouldn't need her glasses after we get her eye muscles in line and her brain to recognize that left eye.

I am just kicking myself for not switching ophthalmologists sooner.  I think Alayna should have been patched when she was very little and this would have taken care of this issue and she might not have needed the surgery.

As the girls get older I am becoming a better advocate for them and instead of trusting a professional just because they are a professional I am trusting my mommy instincts more to know what is best for them and to ask more questions.  I urge all parents to do the same.

Eye patch struggles

We had a great run the first few weeks of Alayna leaving her eye patch on during the 5-6 hours each morning she is supposed to wear it.  But, lately she has taken it off,  or instructed her sister to do the dirty work, numerous times each morning while at home.  She is leaving it on during preschool but taking it off on the bus ride home.

So today before she left for school we pumped her up and offered a reward (not really knowing what that reward might be) for leaving her eye patch on "like a big girl" until MOMMY took it off.  So when she got off the bus today with her eye patch on AND her socks and shoes still on.

We celebrated.

I did a happy dance, Daddy did a happy dance when he came home for lunch and then Alayna told him to give her a kiss "on the lips."  So that it just what daddy did.  One big kiss right on the lips and she was a happy girl.

Rewards come in small packages around here folks.

Hopefully it will motivate her for a while!

Pucker up Dad!

The pirate look is in

The girls had their check up with the ophthalmologist Tuesday morning.  Dariya's glasses are working well and her eyes look really good.

However, Alayna's left eye has amblyopia (lazy eye) it turns in slightly especially when she is tired, even with her glasses.  The doctor originally tried the glasses hoping that would solve the problem.

The doctor admitted that her amblyopia isn't too bad but she didn't want to ignore it and have it get worse. We will patch her right eye for 5-6 hours daily in hopes that her brain will get her left eye working up to full strength.  We will follow up in May with the ophthalmologist.  Praying that the patching works quickly!

We are hoping that this takes care of the issue and that she doesn't need any further correcting like surgery.

Thankfully when I showed her a patch she immediately related it to a little girl that goes to our church who uses patches.  When the time came for me to put a patch on she was all ready and prepared then after about 5 minutes she wanted it taken off.  However, she was easily distracted and left it alone and went off to school and came home happily wearing the patch.  I intended to take it off right when she arrived home but she didn't seem bothered by it and didn't ask about it so I left it on for another hour then took it off.

Once off she wanted it back on.  Funny girl.  I am guessing she got some extra attention at school today from it and loved the attention.

Hope each day goes as smoothly.

I can see clearly

We were able to pick the girls glasses up last week.  Dariya's are really cute and she is wearing them all the time.  Alayna's however, she isn't sold on and neither am I. 

 Hmm thinking to myself that going shopping on the day you were given a cancer diagnosis really wasn't such a good plan.  

Don't get me wrong they are cute but, they are just a bit wide for her petite face.  

I didn't realize until we picked them up how wide they truly are...

We opted to go with regular frames instead of the frames made specifically for kids with ds.  Nobody in the metro area takes our insurance and carries those frames.  

So we opted for cute and covered instead of cute and $400 a set of glasses. Obviously, they sink just as well as the ones typical glasses anyway.  

Thankfully Ms. Juanita said that both girls are wearing their glasses at school.  Let's pray that continues.

I promise Dariya was not drugged, she just looks like it

Had to include a cute one of Dariya as the top photo caught her off guard but it is the only cute one I have of Alayna wearing hers so far.

First day of school for Aidan & opthamology update on the girls

Aidan began 3rd grade today.  He was up at 6:15 to be sure that he wouldn't miss the bus (at 8:30)!  Oh yes, he is a worrier.  Thankfully he was excited about the day this morning and couldn't wait to get to school to see all his friends and to experience life as a 3rd grader.
The best part of his day was recess even though it was raining and they had to play inside. 

The girls and I had his usual, first day back to school chocolate chip cookies prepared when he arrived home.

After we got Aidan off to school, the girls and I headed to the opthamologist for our 9:15am appointments.  They both did very well even with the 3½ hour length of the appointment. 
They both had their eyes dilated then we waited, and waited and waited.  Seriously, the whole waiting room was empty and the check in girl was going to lunch.  I asked if she would make sure they hadn't forgotten about us.  Thankfully they hadn't and we only had to wait another 30 mintues!  Fortunately, I came prepared with our iPad and goldfish (would have packed a lunch had I known).  Elmo singing the ABC's is Alayna's favorite thing right now.

Alayna's eyes still have a slight astigmatism and she has a slight nystagmus however, her vision is in the normal range so check up in a year for her.

However, I knew that Dariya had glasses in Ukraine (even though she never wore them) but, what I was unprepared for is how bad her vision really is!  Oh my goodness the poor girl's eyes are worse than mine (which my uncorrected vision is really poor). Bless her I felt so bad that she has been functioning without glasses this whole time.  Now we are trying to find frames that will fit her non-existant sweet little bridge of her nose.  

We have a name of a type of glasses (Erin's world) that are specifically made for kids with ds but, so far nobody in town that carries them is covered by our insurance.  Go figure!  Will keep trying and hopefully she will be seeing 20/20 in no time!  Any ds mamas out there that have any other good frames to try let us know please.

Dariya also has an astigmatism in one eye and that one eye isn't working as hard as the other.  We will try the glasses first but if it doesn't self correct she will need some patching.

Dariya will go back in 2 months for a follow up with her new glasses.  Prayerful she will gladly wear them.

Next appointment August 24th: Cardiology for Dariya to access her heart status!