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Thursday, September 29, 2011

Big things around here!

Guess who can drink out of a sippy cup on her own????? Oh yeah, this girl! And guess who is super proud of herself? That would be ... this girl! And guess who is beyond measure ecstatically over-the-moon tearfully thrilled about this new development? That would be this MAMA! I can't tell you what an amazing feeling it is to teach Sunshine to feed herself with a cup and be successful! I also can't even begin to describe the feeling of pride I have for my girl ... like my eyes welled up with tears when she "got" it.
It's a simple milestone for almost all kids. But not our kid. This is a BIG deal for our little lady. Trying to teach a cleft kiddo who literally physically can't suck how to drink out of a sippy is a pretty miraculous feat. But it's not even just that. For the first time in almost 4 months, Sunshine ate & drank her first meal completely unassisted, on her own earlier this week.
And again, that may not sound like much, but it means the world to us. For the past (almost) 4 months, we have been feeding Sunshine a bottle by squeezing it into her mouth - this is something that unfortunately, she just can't do herself as much as she would like to do it. Also unfortunate (for us) is the fact that she is a sipper, rarely ever finishing a bottle in one sitting. She usually only takes a few gulps at a time. That means that we are squeezing a bottle off and on all day long. It can get a bit ... tiring ... to say the least.
So this whole cup thing is AMAZING. Liberating for everyone even. Sunshine no longer has to wait for us to help her (and get frustrated in the process) and we now just need to make sure her cup is full. And Sunshine is so stinkin' proud of herself. And that itself is just awesome to witness. Can ya tell I'm jazzed? If you can't, let me tell you - MY cup is pretty darn full :-)
So how were we able to make this work? It's the Nuby silicone spout cup. I cut the inside of the bite straw to allow more liquid to flow through it. She always bit the bottle nipple, so it was pretty easy to transfer that over to the cup. So once she tips the cup back, biting the straw allows the drink to flow into her mouth - no sucking required! And she is now a PRO! Wahoo for my girl!
In other awesome news, Sunshine's physical therapist asked that I get her "real" tennis shoes to help support her ankles. A happy accident side effect to having new tennis shoes is that they make it much more difficult for her to scoot around on her bottom. So she actually started crawling! At 16 months! LOL! Go figure! She still scoots mostly, but more miraculous (albeit slow) progress coming from our girl!

She is still terribly physically delayed though. In fact, the PT has suggested orthotic braces because of her low muscle tone and lack of control over her feet & ankles. Ugh. I think we have decided to hold off on those for a bit and just wait out her progress. *Every* thing is so traumatic for her. I don't know why, but every visit from anyone is traumatic ... the multitude of doctors appointments, blood draws, surgeries, therapies, etc. ... she screams, thrashes, kicks, etc. through all of it. And seriously, the last thing I want to do is add one more specialist into the mix ... one that will require me to restrain and hold her down so she can get casted for molds of her feet. Yup, that one would be very traumatic and I just don't want to put *us* through that. We have another surgery in a month and a half ... isn't that enough?

Honestly, the physical therapy is probably MORE than enough for her. LOL. God Bless Sunshine's therapist - she only sees her kick, scream, throw herself back ... you get the idea. The great thing is that she is giving me more tools and tricks to help Sunshine get moving but ... well, I often feel like every day, all day is a physical therapy session. It's not pretty. And the progress is just so. darn. slow. Unfortunately Sunshine's low muscle tone and extreme flexibility have left her not able to trust her legs to hold her up. Getting her to do anything therapy-related is downright painful for everyone involved, even without her therapist here!

I *know* that she will walk one day ... and what a sweet day that will be.

9 comments:

  1. Yes, she will! I'm so happy about her sippy progress and crawling...I know what a great big deal those are!!! :o) And you know I understand very well how tiring and frustrating it is to feel like you're the therapist all day. Grace, grace, grace to you as you love your beautiful girl into trust and security. She'll get there!

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  2. Congrats on a wonderful ordinary miraculous achievement! You GO GIRL FRIEND!
    Nancy

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  3. HI Nicole,
    Our friends adopted a little 15 month old from China about 4 years ago who couldn't sit up or walk and only weighed 13 lbs. She is doing great, she walked on her own about 6 months after being home. She will always be a little peanut being 5 and wearing 3t but other than that she is doing wonderful. Our little one is awaiting us in China and is 15 months and has some big delays, I can't wait to get her home and give her this mama's love. So happy for you. We are hoping to get our little one in March or April.

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  4. Awesome! I love the little milestones! She is just a beauty!

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  5. Ohhh, big deal, very big deal for a very sweet girl (and mama!).

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  6. We know how you feel on the slow progress thing. Speech therapy has been slow going for us. We are finally making some progress but we too have another impending surgery this month. So ready to conquer these things and not have to put them through more. Lifting you and your little one up. Totally compassionate.

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  7. Hi, Nicole! great to meet you last night! your family is beautiful and i love the post on the sippy cup "FREEDOM" :).... great job and congrats to all of you for the huge achievement!! see ya soon online/ at the group! Amy

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  8. Way to go Brooklyn!

    As for walking, for PI kids they are not actually considered delayed for walking until after 18 months. Cori actually did not walk until after she was 2yrs old according to her file. She still has gross motor delays and low muscle tone but she has been progressing so well on her own that her pediatrician has not had us do PT with her.

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  9. Love how jazzed you are about it! You are her biggest cheerleader! :) And, I can't wait to read that post after she takes her first steps...I may hear you cheering from 2 hours away. :)

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