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3.18.2010

The new kid in town

 Proudly showing off her birthday nightgown.

Actually calling Darcy the new kid in town pretty much seems like it can't be true.

I mean, sure, we did have a total and complete melt-down today leading up to nap because she wanted milk and I didn't understand her (at first polite but then frantic and sobbing) request.  After I finally (with Kylie's suggestions) figured out what she wanted, we added milk to her signing vocabulary...

But other than that, it feels like she's been here in our home with us for months already. Sometimes I even find myself wondering if she and Caleb came from the same mould.

Wish they had been eating their cupcakes beside each other instead of across the table from one another (so I could have gotten both in a picture) that night ~ it was a mirror image going on for sure!

But then I have to stop and wonder if it were actually she and Kylie.

 A second "little momma" lives in the house.

 We continue to make break-throughs daily, this little one and I.  Take for instance her nightly bottle.  Which for a second I must side track and recall the complete disbelief on our guide's face when she asked us if we brought a bottle along with us and we said no.  I mean, really, she was just weeks shy of turning three.  How were we to expect that she still took a bottle at night?  But oh how glad I was that she did, bottle time is wonderful for bonding.  Except that first night she refused to let me do more than sit her on my lap.  She put her back to me and grabbed the sippy cup out of my hand (we've bought a bottle since we've come home).  But tonight as I gave her the bottle she laid back in my arms and gazed at me as she let me stroke her face.  

And many nights I wake up either with her arms around my neck, her hands on my face, or her fists wrapped in my hair.  Sure, I'm a light sleeper and all, but it warms my heart that she wants to be so close.  Because at first she wasn't too thrilled with her new mama.  Besides, one day she'll move to Kylie's room (that's Kylie's current prayer request at night ~ that "soon Darcy will feel safe to sleep in her bed in our room so we can be sisters together") and our queen bed will feel huge again.  
In addition to starting to trust me, Darcy is learning the routines of the house.  Dishes to the sink after a meal, dirty clothes to the laundry basket after bath, shoes to the closet before bed, toys put away in their respective spots.  And the funny thing is that frequently she is reminding her brother who is lost in his cars.  It cracks me up to hear her yell, "Hah!  Ge ge!"  (Hah is her little yell to get your attention, it sounds sorta like hey, but not really.  And ge ge is  Mandarin for older brother) at him across the house.  

She is also learning to endure her eye drops.  Those got started  on Saturday night.  (They would have started on Thursday night, but we decided to wait for her to be added to our insurance before we paid for the drops.  I stopped by Thursday to get them and they were going to be nearly $300.  After insurance they were $60).  By now she climbs up in my lap when she sees Ian coming with the bottle, rattling off something in Pingyao (what we were told her dialect was) and holding her hand out for a tissue.  Then comes the smile as she's also learned that in exchange for the torture that she gets two M&M minis.  

 "Maybe if I wear sunglasses Mom and Dad won't recognize me and then can't put my drops in"
Yes, she's wearing four pair.  No, it wasn't really anywhere near "drop time."  I also had to include this picture full size to document how her pants slide down.  Poor girl has no hiney to hold them up...

Speaking of eye drops, the day before we even started them, we spoke with the pediatric childhood glaucoma specialist (or rather I listened as her secretary spoke to me) and learned that we have an appointment to meet with her on the 23rd, immediately followed by a pre-op consultation, and Darcy has surgery for her right eye scheduled on April 7.  I questioned if they were going to give the drops a chance and was told that Sturge Weber related glaucoma is notioriously difficult to control with drops, so they are putting us down for one of two surgeries (to be determined during our visit with the specialist on the 23rd) but can simply cancel the surgery if the drops work.  This way we are already in the system in order to get things moving to preserve whatever vision Darcy has left in her right eye.  Sorta made my head spin.  My darling husband on the other hand was immediately on You Tube and found a video of the surgery Darcy is most likely to have.  He was like, "Hey honey, check this out!" but I saw a needle and an eyeball and decided that he could be the "family expert" on what was coming down the pipes.  I'll be there to love on my girl, but I'm not gonna watch it!

So, I said Sturge Weber related glaucoma.  Following our visit to the local pediatric opthamalogist and then our pediatrician, Sturge Weber was put on the table.  Fair enough.  Some additonal research (to help explain what it is to family) revealed the following.
"What Does Sturge-Weber Syndrome (SWS) Look Like?
The most apparent sign of SWS is a birthmark or port wine stain (PWS) on the face. The PWS is due to an overabundance of capillaries just beneath the surface of the involved areas.
When the port wine stain covers the eye and forehead region of the face, SWS should be considered.
In rare instances, SWS is present even in the absence of the PWS. SWS consists of three basic types involving a PWS on the face, eye or the brain."

One thing I want to point out is that, in our case, a child with Sturge Weber looks like any other everyday kid.
She runs and plays on the playground

and gets excited about birthdays. 

Which brings me to the visit with the neurologist.  We walked in and after he observed Darcy for a few minutes and asked me about her medical history (which of course is limited) he looked at me and asked, "So why are you here?"  And it wasn't a smart alec way that he asked.  He asked me to put my mind at ease and while he did confirm that Darcy has SWS, he gave his medical opinion (that can't be 100% confirmed without an MRI) that Darcy has Type 2 SWS.  So there it is.
(Type 2 involves a vascular malformation on the face and the possibility of glaucoma, but no evidence of brain involvement.  Recognizing the facial port wine stain is often the first sign.  Throughout the life of the individual, connected symptoms may include glaucoma, cerebral  blood flow abnormalities, headaches and various other complications.)
When I questioned him to learn if seizure activity could have gone undetected in China (which would change her classification to Type 1 which is MUCH more involved and unknown) if they were petit maul seizures he assured me that SWS seizures would be grand maul "jerky movement" seizures.  Then he gently suggested that we have an MRI scan in a few months to put my mind at ease, but AFTER we deal with the pressing issue, which is her eye.

Oh, and yes, we are planning to see what a dermatologist (we are lucky to have one of the country's leading pulsed dye laser surgeons here in our greater metro area) can do about her port wine stain.  We've gone back and forth on this one,  (Honestly I think that making decisions that can be viewed as cosmetic are loaded) but in the end have decided that if we can help prevent her PWS from thickening and becoming raised later in life that we will do it now.  I called his office as soon as we got our referral, but he is so booked up that our appointment is the first week in June.  At least we have some time to build language skills before that round of treatment begins...

14 comments:

adoptionroad said...

Very excited that your neurologist wanted you to stop wastin' his time. ;-) jk... that is how I felt when we saw the cardiologist and the cranio facial surgeon and the audiologist. They all looked at me as a waste of time and I breathed a deep sigh of relief that my kid was "normal" or at least as normal as a kid with UMA can be. Thanks for explaining SWS. Its nice taking diagnosis and seeing them in real life... especially when they are attached to very cute 3-year olds!

adoptionroad said...

And I should note that while I was writing this comment I kept looking down and wondering why there was a photo of you in an airport in Taiwan. Man you and your sister look alike! Are you sure you aren't twins?!

TanyaLea said...

I love learning about other special needs. It sounds like you have been busy and doing all your homework. Praying that the drops to the trick and the surgery isn't necessary. Darcy is such a hunny!

I loved how you talked about feeding her bottle to her and she let you rub her cheeks and hair while looking up at you...so precious! I had a full visual going on!! And enjoy the cuddles while you can...even in your bed... they grow up WAY too fast!

Blessings,
~Tanya

Di said...

I am glad taht the neurologist was so positive! What a relief and blessing for you all but mostly for Darcy herself. It looks like family life is just as it should be!

Laurie said...

It's so nice to have a plan, isn't it? It makes things so much easier when you know what you're dealing with and you have the best professionals to guide you through it. Keep us posted on the appointments- I know you will!

Chocolate Mom aka Blupoetres said...

Wow, I learned so much reading this post. Never knew of SWS or the PWS, thank you for sharing your experiences with us. I was really touched reading how she finally cuddles up to you. I know how wonderful that feels with my own son and it is definitely one of the best feelings having a little one wrap themselves up with you as their comforter!

Pam said...

So glad to see you well little Darcy is loving her mommy and how well she is doing with her siblings! Wow!

My head is spinning with all of Darcy's appts. and how well you're handling that angle of getting her home. SO glad to hear that you were wasting the neurologist's time! THAT is very good news!

Rachelle said...

OH yes, speech melt downs... we have then daily. SO ready for speech therapy. Many prayers for Darcy's eye.

C.C. said...

Great news from the neurologist!! Now you know more just what you are dealing with. I can't wait to get to know Darcy more....I love her sassiness already:-)

Grandma Shultz said...

Darcy, you are such a brave little girl and so intelligent. You are learning signing and some words and phrases already. This morning when you told me "I love you" on the phone, I about cried. In fact, I thought you had handed the phone to Caleb or Kylie and they had said it. Your eye drops are going to help you and you are becoming very brave to let Mommy and Daddy put them into your eye each day. I'm so proud of you. By the way, I really like all of your sunglasses!
LaoLao

Stephen said...

Everything about this post is beautiful. From the adorable pictures of Darcy to your effective way of communicating your and your family's complete love for her. I'm with CC - looking forward to getting to know her more.

Ally said...

Little Darcy is just beautiful! We will keep you all in our prayers and pray the drops do the job! I love the M&M story.

Nancy said...

Thanks for the neuro update. I'll be praying for her eyes and upcoming appointments.

Glenda said...

Such a sweetie. She's doing so well. And you all have just hit the ground running with the Dr's visits. She is going to be just fine. It's wonderful that she allows you to cuddle her.