Awana Night

The kids all go to Awana at a local church.  Even Lila!  After about the 3rd week in January and seeing her brothers go have fun, she was ready.  She said bye with a smile and walked right on in to the Cubbies room.  She loves Cubbies, and wearing her Cubbies vest, and holding her Cubbies bag and looking through her Cubbies book. 

In February, Scotty was picked to hold one of the two flags at the beginning of the night.  He was a little shy about it but did it and I could tell he was proud.  What fun!

 

Scotty holding the Awana flag

 

notice big brother Benjamin in the background

 

Scotty also finished his 1st Sparkys book that

night and got his award and 2nd book!



Lila's Surgery Date is Set

We realized Easter this year is March 31st, so we opted for April for the surgery because the earliest we could do it is March/April per the craniofacial surgeon. We were waiting on the scheduler to get surgery dates from the pediatric neurosurgeon in order to be able to schedule the surgery with the craniofacial surgeon, Dr. Fearon (whom we love).  Both the ped craniofacial surgeon and a ped neurosurgeon will be performing the surgery.  The surgery will be 5 1/2 hours from when she is first put under to completion, allowing time once she is under to do their markings and separate her hair into many tiny ponytails.  Dr. Fearon really is something.  Her head will NOT be shaved!  She will NOT have a straight surgical line.  He separates the hair in a zigzag fashion so that it isn't as obvious when the hair is wet that there is a scar there.  He is so concerned with the children not feeling different - he gets "it."  So about 2 hours I think is prep time and not the surgery.  She will be in Pediatric ICU the first night and a regular room the second night.  I will stay with her and my wonderful mom, Gagi (a.k.a. Marcy), is coming over to help the week of her surgery.  Tom will be at the hospital a lot,  but since we are so very blessed to have a world-renowned craniofacial surgeon in our backyard, he can also be home a lot with the boys so their schedules stay as normal as possible and to keep them busy because we know they will be concerned about their little sister.  Tom's awesome mom, Nonnie (a.k.a. Connie) will be here for much needed help right as my mom leaves to go home.  Lila's eyes will be swollen shut for about the first two days - that will be the hardest part, Dr. Fearon said and we agree. She won't understand why she can't see. Please pray for us and her. 

 

one of my favorites because it shows her gorgeous smile,

which usually she doesn't show in lieu of silly faces

 

the ever popular peace sign

 

of course we had to take a picture of the back, too

Her surgery is going to be Friday, April 19th.  We are the first case at 7:30.  We will be at the hospital the whole day before surgery with many doctors appointments and tests (bloodwork, MRI, ped neuro appointment, Dr. Fearon's appointment I think, a photographer for pictures, a geneticist, etc.).  The scheduler said she will be sure to leave time for us to have lunch, so I know we will have a full day on Thursday. 

one of those silly faces I was referring to

 

You know it's a busy year when you will have maxed out your medical deductible by February and your family max by April.  It was very difficult scheduling this surgery.  We want to get it over with so Lila's head is protected, and well, so it's just done and behind us.  Yet knowing it is coming up is very hard.  I know what they will be doing and it's on my amazing, sweet little girl. We just keep praying the surgery is textbook and her recovery is textbook.

Benjamin

We have been dealing with some health issues with Benjamin over the last 1 1/2 years.  We thought over the last 14 months that we had figured it out and he was on the road to recovery.  He was diagnosed with hypercalciuria and osteopenia at age 8 (right before he turned 9).  Over the last year with a low-sodium diet - yes, LS diet at age 9, and medication, we thought his bones were thickening and he was on the road to recovery. 

He had another bone mineral density test done and some other tests run in November, 2012, right before we left for China. In January we got the results.  Everything was worse.  More calcium is being lost from his body and now he has osteoporosis.  Our 10-year-old has what most people don't have until they are grandparents, if they have it at all .  We have actually been to the doctor more with Benjamin than Lila in the last two months.  They are trying to figure out what is going on. 

We have an appointment with a ped endocrinologist later this month in March.  His new ped nephrologist changed the medicine that wasn't working and we are praying the new medicine will work.  We find out the first of April just before Lila's surgery. Still on the low-sodium diet. Please be praying we pinpoint the cause(s), that it can be fixed or maintained so that his bones can regenerate, and that his quality of life remains intact.  It's difficult to not become overprotective, but we can't.  So he will be doing soccer and baseball this spring (we did consult the nephrologist) and a conditioning class at the local rec center.  He needs lots of weight-bearing activity to stimulate bone growth.

The next BMD test won't be done for a year since bone growth is so slow.  We are working to limit the amount of bloodwork done, too.  The poor little guy has been stuck quite a few times this year already.  We have a topical numbing gel now to help with blood sticks, even if it's just mental it helps with the stress of going to get it done.

Guess Who's 10?!?!?!?!?!?!!

Well, it's finally happened.  My baby has turned 10! In February we celebrated the milestone that is 10.  I remember actually thinking when he was a baby that someday he would be so much older and realized it would be 2013 when he turned 10.  I remember thinking, as he slept on my lap as a 10-month-old with his little legs not long enough to reach my knees, that someday his legs would be so long they would go way past my knees when he sat on my lap..... 

We decided to have family time instead of a big birthday this year with Lila just getting home and being away from the boys for 2 weeks while we were in China.  Our awesome family in TX came over for the festivities.  We had a fun-filled weekend at Great Wolf Lodge and Lila got to meet more cousins.  She loves Max and Macy, especially Macy because Macy is girly, too, and I know Lila enjoyed playing with another girl for a change.  Benjamin had a great weekend, and brought in his milestone birthday with a bang.

 

Hylands and Cabells Unite! (Yea for Scotty!! At least

*somebody* looked at the camera. ha ha)

 

 

 

the big 1 - 0 !!

 

 

 

 

 

 

Yes, Lila let Aunt Lisa hold her right away! She knows good peoples.

 

  

 

You just have to snap the camera with this many kids.

 

You just have to snap the...wait, did I say that already?

(yes, this is a different picture, second try)

 

 

 

 

Ahhh, the never-ending MagiQuest....

 

 

Our birthday boy....you look cool, Benjamin

Homeschool Field Trips in Jan and Feb 2013

In January and first of February, we went on field trips.  The first one was to a cool animal shelter where the kids got to see cats and dogs up close.  We went with our good friends Lewis and Anita.  The next one was to the Dallas World Aquarium. 

 

 

Scotty is so photogenic!  This doggy was so sweet and cute, but huge (think backyard bombs) and sheds a lot.

 

Dallas World Aquarium

 

 

 

Not the best pic of mom, but any picture with my kids is a good one.

 

waiting to feed some cool birds

Sealife

We also went to Sealife in January with our friend, Lewis.  The boys really loved it, especially Benjamin.  Lila was a little young for it but still had a good time.  Afterwards, we had promised Benjamin he could do the bungee jump and Scotty decided to try it, too.

 

feeling baby sharks

 

 

Scotty, Lewis and Lila watching the fish

 

 

Legoland

In January, we finally made it to Legoland.  A friend of our jokingly called it Germland, but it still is a lot of fun and the kids LOVE it.  If you have the chance to go to one, do it.  Lila had a blast and was not overwhelmed.  In fact, she was in her element with the karaoke room even though she didn't know any of the songs.  She LOVES music and dancing.  I have a video somewhere.  If I can figure out how to upload it and it won't crash the system, I'll try to put it on. It's A D O R A B L E.

 

Our friend Jaime

 

what a handsome guy!

 

 

 

Scotty and Lila have found common ground in Legos and megablocks.  It's helped them bond.

 

Our other handsome guy!  He's standing in front of the Lego miniature of Great Wolf Lodge in the Lego miniature city.

 

What a great dad!  He met us on lunch so he could spend time with the kids.

Lila's Diagnosis - Finally Confirmed

Lila went to see our wonderful pediatrician, Dr. Han, the first of January.  After checking some bloodwork (ouch!) she was amazed at how healthy and well Lila is doing.  Dr. Han can also speak Mandarin, which we weren't sure if she did, which I know helped Lila at her first visit.  In fact, we've had so many visits in the last 6 weeks with Dr. Han that Lila knows her name now and sometimes talks about her!  Scotty was sick, Benjamin - well, that's another post but we're dealing with some serious health issues with him, and then little Lila.  As a screening, and because we were questioning a certain condition, Dr. Han ordered some x-rays. 

 

 

 

the little patient, I mean itty bitty cutie

 the techs were so sweet with her

 

 

 

We went to Dr. Han on Jan 9th and decided to give the kids a break from doctors and go Friday, Jan 11th to get her x-rays.  The boys went to a play care facility since we homeschool, and Tom and I took Lila to get her xrays. 

 

That afternoon about 2 pm we got a call from the Ped's office that Lila had an unhealed or improperly healed broken right collar bone!  They got us in at a great ped orthopedist on the other side of town (about 45 minutes to an hour with traffic and road construction).  We rushed there about an hour later and Tom left work to meet us there.  They took more x-rays and found that Lila had NOT broken her collar bone (thank God) but rather a pseudo joint.  Her right collar bone isn't attached to her shoulder. 

 

The pediatric orthopedist did some more checking and confirmed, as we knew back in July, that Lila has cleidocranial dysplasia.  It is a condition of the bones but does not change how long she lives or cognitive development (which we already knew - she is very smart).  Praise God that her condition is not life-threatening.  We just couldn't imagine that.  We already know a lot about CCD because we did a lot of research on it before she came home.  The missing cranial bone IS related to CCD and there is a gap there because the bones just never grew together.  She will have cranial surgery and then probably a lot of dental work.  That is the majority of what she faces.  She doesn't have any restrictions and a woman with CCD on a group I've found laughed and said many people with CCD probably have an unfair advantage in things like gymnastics because many are hyper-flexible (which Lila is).  We are glad to have a diagnosis and that is has such a great outlook.  It basically is life as usual.  She is our most outgoing, adventurous, and social child so we are very thankful she can do whatever she wants (after surgery, that is).

Pictures from the week of Christmas

We took Lila to the craniofacial surgeon December 28th and he was very pleased.  He said she had good bones on the top of her head that he thought would make a good forehead.  If you didn't know, she is missing a large portion of her skull from her forehead to the anterior fontanel.  That's why her adoption was expedited.  She went to see our pediatrician the first of January, but that's a different post.

 

These two pictures are two of my favorites.  What a beautiful, beautiful girl...inside and out.

 

 

 

 

 

Our first trip to McD's. They have them in China, so we knew Lila would recognize it and hopefully be more comfortable seeing something familiar.

 

She has always slept so well. What a sweetheart. (that's a tattoo on her cheek : )

 

She still loves cell phones (xiao jia)!!!

 

It didn't take long to get into Mahney's closet (Mommy's)

 

Yes, as experienced adoptive parents who have taken all the classes and read most all of the books, we went against all conventional adoptive wisdon and more with Lila's personality - on New Year's Day, after calling to be sure they weren't slammed, we went to the mecca that is Chuck E. Cheese.  Lils's first words upon entering the flashing, busy world of Da Mouse???  WHOAAAAAAAAA!!!!! and then she ran into the game area to play!!!!

 

 

 

She got the hang of the ticket muncher in no time and wasn't scared at all. We had a great time.