Thursday, January 26, 2012

Doctors Doctors Doctors!

We're up to our ears in what seems like never ending doctor's appointments! December and January were a wash, I can't even count how many appointments plus the hospital stays....and February is slammed with appointments too. The problem is all of Zoya's annual appointments are coming back around right at the same time we're completing all of Mila's initial specialist appointments and all her follow up appointments! I spent a while on the phone this morning trying to get dates set up and my calendar organized! I called to set up:

*Reschedule Mila's kidney ultrasound she missed (yep they said we still have to do it) for Monday morning.
*Call cardiologist to ask about changing Mila's med dose (it's hurting her belly)...confirm her apt. on February 8th and Zoya's annual apt. on February 21.
*Call and stay on hold for what seemed like an hour and finally leave a message to schedule Mila's hearing evaluation, keeping in mind I'd like to try to schedule it the same day as her airway surgery follow up appointment in Pittsburgh so we don't have to make two trips on February 14th.
*Call Ear/Nose/Throat 3 times until someone finally answers to schedule Zoya's tube check appointment (February 21...and oh crap I just realized I scheduled that for the same day as her cardiology apt....darn it all!) Note to self: call ENT again to reschedule that...grrr
*Confirm Mila's Early Intervention Assessment appointment for January 31
*Write into calendar Zoya's eye appointment where she will likely be prescribed glasses-February 7
*Call Sleep Center to schedule sleep evaluation and possibly sleep study for Zoya (all kids with DS should have one done by the age of 4 and Princess girl is 4 months away from being 4 oh my)-March 29

And still left to do: Schedule Mila's shots, make an appointment for the feeding clinic in Pittsburgh for Mila, make apt. for bloodwork for Mila, and make an apt. for a massage for me! (that last one's optional....some day!)

These girls are worth it! A lot of times people say how hard it must be to have two children with special needs, and honestly there are so many things about them that are so much EASIER! But the doctor's appointments....the frequency and number of specialists is definitely a little more difficult...once we get all these initial appointments and surgery follow ups out of the way though, the appointments should definitely slow down a bit! I remember feeling a little nutty with doctor appointments when Zoya came home....but now I feel really nutty trying to keep track of two kids (go ahead you moms of many more than 2 and laugh at me!). I find myself giving the wrong name or birthdate because I get confused who I'm calling for after being on hold so long. I blame the brain of mush on the children....I've never been the same since..baaaaahaha!

Monday, January 23, 2012

Zoya Ice Skates!

We have a super adaptive ice skating program here called Gliding Stars. We tried Zoya last year and she was super anxious and nervous between the helmet, skates, and walker, and then the whole ice skating thing. She did like being carried around the ice and skating fast in someone elses arms though :) Well tonight we went just to visit and Zoya was asking to skate, so she went out with Mike and took a few laps. Well I told her if she wanted to go back out she had to do it my surprise she said okay. I found her a walker and we adjusted it for her (without skates on) and she was laughing and excited so she was carried out to the ice in her walker and sneakers (baby steps). She LOVED it and didn't show any anxiety at all. If you would have seen her the last time we tried you'd be impressed with how excited she was and how little reservation she had!

We put some skates on her and she was a little hesitant but did about 2 laps (being pushed, but trying to move her feet). She a little nervous but her excitement took over and she loved hearing people cheer for her! I am so very proud of her....she has come such a long way! Her confidence is budding and it's so amazing to witness, especially when I think of the scared little girl we met almost 2 years ago!!! Way to go Zoya girl, we are so proud of you!! You rock!

Sunday, January 22, 2012

Saturday, January 21, 2012

How's Zoya?

well....that changes from minute to minute.....

With all the chaos, Zoya has had a little bit of a tough time. She is having some anxiety again, which always seems to peek when her routine is drastically changed, as it was with this last hospital stay. She is over her carseat aversion, for the most pat....but now is terrified if we leave the room without her. It's been fun....and almost impossible to get Mila down for a nap with Chatty Cathy following my every move and screaming hysterically if I even step foot out of the living room. She's got her eye on us like a hawk, making sure to keep us in sight at ALL TIMES. She has been especially clingy to her Daddy...maybe because she's stuck home all day with me :) She's doing best when kept very busy! She's doing fabulous with Mila and Mila just loves looking at and smiling at her big sister! Zoya has been talking a lot more lately but gets her words all mixed up with that darn apraxia. She'll say "I want please swing" or "please I want play"...but at least she's saying please and we get her point and that's all that matters!  She tries SOOOOO hard to communicate with us and almost always gets her point across one way or another! We're so proud of her! She even ate lunch with her class in the big scary cafeteria for the first time and had no problems! She NEVER could have done that at the beginning of the school year, so accomplishments like that help keep her progress in perspective and it's a little easier not to get frustrated with minor setbacks like she's going through now. Her sleep has been a little off, but nothing terrible. She has been visiting with Grandma Liz next door and has asked me about 400 times since yesterday if she can visit "Lee" as she calls her. She even put her coat and boots on and said "Mama LEE house!"

See why she had so much fun...

And today Zoya got to spend some time playing in the snow with Daddy and Mya...I think Mya had more fun than anyone else (she's an Australian labradoodle for those of you who asked!)
Mya can jump!

Such a Daddy's girl lately!
Zoya seeking Daddy's comfort after she face-planted in the snow for the second time!

We'll just keep on pushing through for is settling down again and she is happier :)

Tuesday, January 17, 2012

Days Like This....

Parenting is tough, no question about it. Going from one to two children in a year and a half is tough. Parenting kids with special needs is tough. Sorting out attachment/anxiety/adoption issues in your children is tough. Parenting a medically fragile babe is tough. Don't get me wrong, I'm so thankful for all that we have and wouldn't change it for anything, but today I'm disappointed in myself and my lack of patience, my frustration, my fatigue. I'm annoyed I can't be better at this. I fell short today for sure. I'm feeling misunderstood. I feel like I can't talk about the hard stuff because we chose this. We chose (and continue to choose) to follow God no matter what that means. We knew that meant tough days/weeks/months/seasons. We are in a difficult season, and I know it won't last forever, but trudging through in the moment is hard.  We are being stretched in ways we never thought we could be. Hopefully we'll come out the other side stronger, more faithful. Days like today I question if we are right where we are supposed to be in this life. In my heart I know we are, but that ugly voice rears it's head more often than I'd like. If someone told us it would be this hard would we make the same decisions all over again? Probably, because this is what we were called to do, even on the worst, stinkiest, awful days where I feel like I couldn't have done any worse at this mother thing. I know we all have days like this, but I'm ready for some happier days...enjoying my girls and not stressing so much. We've been through a lot in these past 3 months, I need to cut myself some slack, but I'm so good at being my own worst critic, and it's so easy to let the enemy creep up on you and convince you that you've got it all wrong.

So thankful that tomorrow holds the promise of a new day and I can start all over....

Saturday, January 7, 2012

Hangin' at Home

A typical night at home.....where we've been spending A LOT of time...perhaps too much time! Ready for the Great Quarantine to be over!! But trying to make the best of it!

Tuesday, January 3, 2012

Christmas 2011

Well since we thought we'd be in the hospital for Christmas Day, we celebrated the weekend before. It was a great day, but there was a definite sense of stress on my part with the looming surgery. I enjoyed it as much as I could but wish I could have let go and enjoyed it a little more. We had a nice morning and just like last year, Zoya took allll morning to open her presents. She liked opening one and playing with it for a while. We had to keep telling her she had more presents!

From us and Santa she received a Sid the Science Kid Talking doll, a toddler MP3 player, and a baby doll that can go in the bathtub! Her favorite is the MP3 player, or as we call it, her radio. It came with 20 songs preloaded onto it and we added some more of her favorite songs. She could carry that thing around all day if we'd let her! She and Mila got a pretty cool doorway swing from Uncle Bub and that gift was MY favorite! So good for therapy, and Mila can use it too when she is stronger. From us and Santa, Mila received a white noise sheep for her crib, a travel mobile (that she loves and that worked fabulous in the hospital), and a floor mirror.

The first present Zoya opened on Christmas eve was from Aunt Debbie and as she pulled back the paper she yelled MINNIE! And sure enough it was a Minnie Mouse Doll. So from then on, lots of the presents she opened on Christmas she was trying to guess what was inside by saying "Minnie?" or "Elmo?" It was cute. She got to open some of Mila's presents too and would ask before opening "Mila?" or "Zoya?" just to make sure she knew who it was for before she opened it!

This is when she discovered Minnie Mouse was inside the wrapping!

She loves Minnie!

Modeling her new princess dress!
Family of 4!

So excited for her Sid Doll

"I love him!"
Mila and Mama
Zoya's MP3 player
Attacking Daddy
She loves her pillow from Uncle Bub and sleeps with it every night!

Loved the doll from her Great Grandma P.
Reading her books from Thom and Annie and family! (I LOVE the book called "Beautiful Oops" that they got her...just fabulous!!!)

Mila hanging out on her first Christmas

She loved the wrapping paper!

The bunny is from great grandma and it says "jelly bean!" So perfect!!

More wrapping paper

beautiful sisters

Love how Zoya is looking at Mila

Zoya's new swing

She thinks her mama is silly

Mila says "this is exhausting"

More to come :)

*Also I've gotten many inquiries about my Ginkgo comment. I'm working on a post (in my spare time ha!)