Pages

3.26.2010

My baby's eyes

 They are beautiful eyes, don't you think?
(taken Saturday at the zoo)

So Tuesday was Darcy's big day at the eye center.  One advantage of living where we do is that there is nationally ranked eye care within an hour's drive.  The pediatric department is TOTALLY set up for kids and was AWESOME!  Immediately upon walking in I was so thankful that the first opthamologist decided to go ahead and refer us on.

God continues to go before us in all we do. That was confirmed when our "randomly assigned" doctor who is working on her pediatric glaucoma fellowship turned out to be fluent in Mandarin.  Hearing a familiar language really put my girl at ease and she complied with all she was asked to do.  So we didn't have to wonder if it was vision or mis-communication anymore.  The doctor was able to talk with Darcy and get her to do everything necessary in order to test her sight.

After several rounds of dilation drops and being checked and rechecked by both the fellowship doctor and the specialist, a plan of action was put in place.  First of all we were happy to hear that the sight in her strong eye is pretty decent ~ like 20/50.  Then we were thrilled to hear that while the sight in her weak or "helper" eye is pretty poor (like 20/200) that she does indeed have vision in it.  The specialist was quite surprised and her exact words were, "I wouldn't have given a nickel for her to have anything more than movement recognition in that eye with all the distortion from the pressure build up."  Apparently the glaucoma has been there for at least a year and likely since she was born.  And with her high pressure the specialist is amazed that there hasn't been more damage to the optic nerve.

She also said that we are at the point that a few more months may be critical, so we are going ahead with the surgery on April 7.  She will be having a goniotomy procedure.  (Link included here for those of you who want to know exactly what that is ~ like I said, Ian has already watched one on YouTube.)  It is the least invasive of the surgical procedures for glaucoma (actually outpatient) but Darcy will be put under general anesthesia, so your prayers that morning will be appreciated!

We were also given a prescription for eyeglasses for my beautiful girl.  We believe that her glasses will give her 20/20 vision in her strong eye and will improve her "helper eye" up to about 20/100.  The good news is that glasses look great on her face.  The bad news is that toddler glasses ~ the ones with the little "wrap around" ear pieces ~ are hard to find.  And expensive.  So far we've found three to choose from.  And with the amount we're going to have to pay for them, I want to LOVE them, not sorta like them. 

These are my favorite of the three.  Yes, they are Disney.  Yes, they come in pink.  Yes, they are ridiculous in price.  I like them, but I'm not sold just yet...

Anyway, back to the end of our day at the eye center.  After a detailed discussion about the surgery, the hopeful outcome, what the next step will be, and of course the risks involved, we rushed over to Darcy's pre-op exam.  The nurse practitioner was really great and we enjoyed our time with her.  And I just had to share that while she was going through the questions, she asked about Darcy's diagnosis.  So I told her that right now the neurologist is calling it Type II Sturge Weber Syndrome though we won't have complete confirmation that it is Type II and not Type I until we have a MRI run.  Then I actually started to explain to her the difference between the two, forgetting that while SWS is extremely rare, that the specialized team at that university clinic sees many SWS patients from the around the state.  But instead of being put off with me for "teaching a nurse" about a condition that she has MUCH more experience than me with, she gently said,  "I've seen a lot of Type I SWS patients, and Darcy is nothing like them.  I believe that MRI is going to tell you the same."

So then, some three and one half hours after we walked in, we were back on our way to the car, glasses prescription and pre-op orders in hand.  One more piece of the puzzle in place...

28 comments:

Jess and Tim said...

Kristi~~
I think Darcy will look great in her glasses! I am sure she will adapt right to them with no problem!! If you already ordered her main glasses I know of someone in the adoption community who may be able to help you with a spare pair.

Praying for you! I will definately pray for Darcy as she gets that pressure relieved.

Hugs,
Jess

Jennifer Taylor said...

What a blessing that there wasn't a language barrier at the clinic with Darcy! I'm sure that helped tremendously. We will keep her in our prayers over the next couple of weeks as I'm sure it will be rough for her and you. I'm sure she will look precious in her new glasses!

Andrea said...

She is so beautiful in every way. What a special gift from God to have a Mandarin speaking doctor! LeighAnna just had a basic eye exam and I can see how a language barrier would make that so difficult. We'll be praying for the surgery!

Leslie said...

I'm so glad to hear that everything went so well - and how cool is it that her doc speaks Mandarin? I hope that things continue to improve and that she likes her glasses. We'll be praying for Darcy and for y'all through the surgery & recovery. It's so wonderful that we live close to such excellent health care. Thinking of all of you!

Lindy said...

Darcy does have beautiful eyes!
I can't wait to see her in pink glasses.
(Did she get a haircut?)

Pam said...

Your baby has BEAUTIFUL eyes! What a blessing for Darcy to hear all that was going to happen to her in Mandarin. And what a blessing the nurses words were you, too.

Anonymous said...

I know this may sound crazy but we have a good friend up hear and her little girl's vision is borderline legally blind in her left eye and pretty bad in her right. I dont remember the exact measurement. Anyway she found some beautiful glasses/frames at Target. She wanted something that Audrey Anna could wear to play in and would hold up but not cost an arm and a leg. They have worked extremely well so far for her. I dont know if your Target has a vision center in it but it might be worth looking into. So glad that you are getting some good news. We will keep you in our prayers.

Julie Shively

Cindy M said...

What a beautiful picture of your baby girl...I actually sucked in air. She just looks so sweet. I am thankful to see how God is so obviously right ahead of you.

Love ya!

Nicole said...

OK I now have 2 in glasses, and I have to say, we have tried lots of "kinds" We wore a strap with the metal frame ones with the nose pads (that was awful). Our favs are the plastic frames, did you know they can heat them and mold them (to make that wrap around hear feature) and then they stay put just like those pricey toddler ones??? They can, we got ours at Costco, but they told me any where can do it, just ask. It is amazing! We can get them reheated and adjusted anytime, which makes them last longer! Sharing cause I didn't know any of this!! Oh and Enick will be sporting some black plastic frames very soon, just like his sister Emmali! Check into it, we didn't like those wrap around ones, they really hurt Em's ears and also put pressure on her (lack of) little nose.
Sorry for the book !!! Darcy will look adorable in glasses!

Angela said...

Sweet, sweet girl. I love to see how God has shown Himself to be faithful to you all in this process.

Praying for sweet Darcy and your family...

C.C. said...

HAS to be a God thing that Darcy's specialist is fluent in Mandarin! Darcy is a very brave little girl:-)

bugs parents said...

We, too, have a little one in glasses. She started wearing them at age 2 shortly after she came home.

We have been through countless pairs of wire frames. They just don't hold up to the toddler abuse. Those frames, I've been instructed time and again, are to be taken off with both hands, not just grabbed from one side and ripped off. Try telling that to a 2 year old who is tired of them.

We switched to plastic frames and it's the best thing we've done. They can heat the frames and mold them to fit perfectly. Now, the glasses stay on and don't break! My suggestion would be to look into the plastic ones.

They also told us the wrap-around ear pieces can be added to most wire frames.

Kathy said...

I'm so grateful the eye appointment went so well. What a blessing to have someone to speak Mandarin. And the nurses's comment was very reassuring. Darcy does have such beautiful eyes. She will look even cuter with her pink glasses. I wonder - will Kylie be jealous?

Lilly said...

very good news! and a doctor who speaks mandarin is awesome! our ped is caucasian and has 2 chinese girls and she learned to speak mandarin and a big plus when we saw her. we are also seeing the eye doctor next week.

your girl is beautiful and smart and will do just fine. prayers your way on april 7 for HIS will. GOD will take care of that sweet little soul.

Grandma Shultz said...

Darcy, you are so beautiful. I can't wait to see you in cute little glasses. Know you will look sassy! God is definitely before you - the doctor spoke Mandarin?! What a blessing.
Love, LaoLao

Anna Grace and Andrew's Jie Jie said...

I am pretty sure those are the glasses Anna Grace has! I know your sweet girl will look Beautiful!!!

Journeymark Cards & Gifts said...

I am grateful you are getting some answers, and answers fairly quick. I can relate with the eye pressure, eyes dilated, and MRI's. However, I am an adult and to read that she is doing so well with her visits at her age, is such a sweet testimony of her spirit. How great that God provided just the right doctor???!!! He is so GOOD!!!

Carlie said...

Oh I'm so glad I popped in before bed, Kristi! Praise the Lord for sight in her eye! Darcy has been on my heart so much...I've prayed for her everyday. I know her surgery will go smooth and that MRI will show wonderful results...I'm with that nurse! I'm writing Darcy's name on my calendar on April 7th so we will be especially praying that day. Will it be outpatient?
We love you guys!
(and I'm cracking up that you and I both are literally on the same page tonight...I just got your comment!!!!!!)

Ally said...

I can't wait to see her cute little face with her new glasses. God is so good!

Di said...

I'll be thinking of you and your family on the 7th - I am so pleased that the news is positive!

Larry and Carol said...

It is truly amazing how God arranged the Mandarin speaking doctor to comfort and guide Darcy through the medical procedures. PTL! We will keep Darcy, the medical team and you (all 4 of you) in our prayers on the 7th.
Love A Carol & U Larry

Nancy said...

Wow, great news! I can't believe her doc spoke Mandarin too. I bet she'll look so cute in her glasses.

Melanie said...

Glad to read the update on her eyes. Will definitely pray for the surgery and all involved on the 7th. Can't wait to see her in little glasses. Also read your laundry post and I feel your pain. That would be a good business to start - people who come to your house a few hours every few days to do your laundry -folded and put away. ;) Love ya.

The Ferrill's said...

Kristi...just realized I posted a comment when my daughter was signed into her gmail...Carlie is Laine! Hope you weren't wondering who in the world that was!
Sorry!

Gavin's Family said...

I will be praying for Darcy and the upcoming eye surgery. You and Ian will also be in my prayers as it is just as hard on mom and dad to send your little ones down to surgery (even simple out-patient).

((hugs!))

Lisa said...

Praising the God who is going before you! So glad to hear that she got a good report! I'll be praying for surgery!

Tricia said...

Don't know how I missed this post over the weekend. I wasn't feeling all that skippy, though. I'm glad to hear that things are looking better for Darcy's eyes. She's so precious. It was fun to see her play with Abby last night. Wish we had more time ~ "relaxed time" that is. Looks like you've received some good glasses tips in your comments section too. I hope you can find a pair that are pretty economical.

Wife of the Pres. said...

Kristi, I'm going to mark April 7 on my calendar. I understand the feelings about surgery! So thankful already to see how clearly God is going before you and know He'll continue. Hugs, Leslie