Tuesday, September 3, 2013

Update: Mila

I'm going to blog about each of the girls separately starting with Miss Mila, ONLY because I have the funniest video ever of her from last night and I want to share it! She keeps us laughing and is definitely the class clown in the family! I grabbed my phone real quick while we were eating dinner last night as I watched this unfold......
(I think blogger is having a problem with videos, working on getting them to play!)
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Most kids feed the food they don't want to the dog....Mila's learned she's not allowed to do that so I guess she thought she'd try feeding it to Sofia ;) Apparently Mila didn't like her dinner, or maybe she just wanted to share with Sofia! Either way, she knew she was caught in the act, but tried to smooth it over! 

You can see how she tries to get out of trouble by being funny as well! How could I possible not laugh?
video

She has all of a sudden decided she is ready to walk like her sisters! She is consistently taking 5-6 steps from her chair or from a standing position and is getting closer to starting to take 7-10 steps more consistently! She is able to push to standing from the middle of the floor and take 3-4 steps now and she's learning to put her arms out to catch herself when she falls instead of diving face first!!! We are SO very proud of her. After hearing some specialists say she may never walk without the use of a walker, you can imagine how excited we are as we experience every single step with her! I can just hear her saying, "Oh ya? that's what you think? I'll show YOU!" We're still using her walker for long distances because she tires VERY quickly. Her goal right now is to build up endurance. With such low muscle tone it really takes a lot out of her to even take those 7-10 steps, or to walk in her walker for a few minutes. 

She is starting to "talk" more. We're using a "total communication" approach with her, which means we are teaching signs, spoken words, and using PECS (a separate blog post coming about that). She calls appropriately for mama and dada, says "more," makes dog, duck, cow, and cat noises, says "beep beep" for car, and has a word approximation for "help." She's starting to initiate her own play activities more frequently and calling for us to help her with a toy when needed. She's starting to use more and more signs. Her favorite lately seems to be "go" when we stop during our walks or stop at a red light! I walked into her room and saw her signing all the words to one of her favorite signing time songs (it was playing on CD)...when I asked her to show me she refused! That is how she earned the nickname "Ninjabean" from my friend Jo! She's able to feed herself a small meal with a fork and is doing pretty well with her spoon too (it's just REALLY REALLY messy!!!). 

Her new favorite game for the past few weeks is to pop up in her crib as I'm getting her room ready for bedtime. She pops right up after I lay her down, throws out her binky and just LAUGHS hysterically! I run over and tickle her and she burries her face in the pillow, repeat (as many times as I allow haha). She has the girliest laugh and most high pitch scream I've ever heard, too! I just love her little personality. 

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She gives THE BEST hugs and snuggles too, every single time I hold her. It doesn't get any better than a hug from this sweet chunky love! Speaking of chunky.....Mila is nowhere on the down syndrome growth charts, and it toward the top of the typical charts these days! She is 31 pounds and 36 inches (which puts her only 6 pounds and 6 inches under her FIVE year old sister!) Can you believe our tiny 7 pound baby girl is now at the other end of the charts? I love her fat baby legs, but as she's moving more I can already start to see her slimming down and losing some of that baby fat......good news is she has a lot left to go :) 





We were sad to find out her eye surgery was not successful :( They did muscle surgery to try and help her from "posturing" which I posted about before. Basically she tips her head way back to get her nystagmus to stop so she can see clearly. This is her "null point." The surgery attempted to change her null point so that her head posture was in a more natural position. We were informed that about 25% of kids need a second surgery to completely correct the problem but were also told we'd most likely see a ton of improvement after just one surgery. At first we thought we saw some improvement because she wasn't posturing as much to watch TV, then we realized she wasn't doing that because she couldn't see much-she was having some swelling due to an allergic reaction from the ointment :( So she has another appointment in a couple of months to discuss a second surgery :( 

 Waiting for surgery....

These were apparently the smallest socks they had and she HAD to wear them they said, okay then! I guess they double as pants! 


Clowning around! 



 Not so fun! 


Poor dolly babe....this was, to date, her easiest surgery....figures it didn't work LOL! 

And if you notice Mila rockin' some cool purple headphones and mama's old school iPod, it's an attempt to meet her auditory sensory seeking and decrease her whining.....first quiet Target trip with Mila..... :) 


We've been busy with lots of therapies. We're in the final "6 months until she's 3 and ages out of early intervention" stretch and have added and increased some of her therapies to really give her as much as we can during these last 6 months. When she turns 3 the only way she will get services is if we enroll her in preschool. Having a March birthday, we're not sure we'll send her that late in the school year....we always have the option of outpatient therapies through our insurance, as well, but the in home therapies are just so nice! I'm going to be taking her and Sofia to a mommy and me dance class once a week and I think they're going to love it! 

Here's a picture of Mila with Uncle Bub and his AWESOME SHIRT! My friend took this picture of Mila pouting on the playground and Bub had it made into a shirt...so funny! Equally as awesome is Mila picking her nose in this photo. 

And clearly Daddy has been letting them watch WWF...well okay, he was at work when this pictures was taken, and I might have encouraged their craziness by laughing right along with them.....Sofia has no idea what's about to hit her hahaha!
(when you can stand from the middle of the couch, it must be counted as "therapy" and so I couldn't tell her to behave and stop jumping on the couch! P.S. no babies were harmed)

I continually look back on our journey to Mila and on how the Lord filled us in at the very last minute with details about her health and needs and just how sick she was. I know, for a fact, had we known that before meeting her, we'd have run the other way. Oh it breaks my heart thinking of life without her....I'm so thankful the Lord knows our hearts best and that His plans are better than anything we could ever imagine! Having been through all of her surgeries, sleepless nights, health scares, wondering if she'd even LIVE, well all that has bonded us to this beautiful child in ways that most people can't understand, unless they've lived it. I find myself trying to imagine preschool and letting her go a little more as she grows up, and I just can't imagine. Even though she's our middle child, she'll always be my baby....

Up next.....an overdue Sofia update......she IS turning TWO in less than a week, ya know! OH MY! 

4 comments:

  1. She's amazing in every way. It's so cool to see how far she has come. She is a comic and she's going to show the world what she can do no matter what the Doc's say.

    You have surely been blessed with amazing children.

    Wendy

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  2. Oh MY is right!! This little one is a character for sure! Love these little videos of her being spunky and figuring out how to redeem herself!! It's just amazing that she is the same little Jelly Bean you first met with sad, hollow eyes and airplane arm posture. Praising God for her today!! ((((HUGS))))!!

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  3. So fun to see Mila's video.
    She is just so cute.
    It's awesome to see her progress.

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  4. Her giggle is absolutely delightful! You can't help but laugh right along with her lol! Praying for a better surgery outcome next time if it happens! Lori

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