It’s been almost two weeks since Skyler was taken to Oklahoma for her surgery. It was difficult for us to leave her yesterday because we won’t be able to visit her for the next five days (we need to return to work back in Arkansas). Though it’s not all sad for us, Skyler is recovering really well and before we left the NICU she even played with us!

Skyler has never paid much attention to her toys before…we tried playing with her by using some stuffed animals as puppets but she never showed any interest. Because of this, we came to the conclusion that it will take awhile before she can enjoy or react to her toys. But yesterday she surprised us, she showed great interest in this beanie baby called Eggbert. It was really fun watching her through the camera. Thanks to this video, our sadness from leaving her was completely replaced by joy.

We can’t describe the level of  happiness we feel just by watching her clip with Eggbert. We hope you enjoy this video as much as we do. With her Lissencephaly, it’s discouraging sometimes to think of what she may not be able to do. But when she reacts like this it helps us focus on what she can do and gives us some hope that she’ll continue to surprise us.

There are two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle. - Albert Einstein

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Skyler is still at the NICU in Oklahoma recovering from her g-tube and fundoplication surgery. Even though she’s been in the NICU since she was born, we can still participate in her care. Every four hours we like to help in changing her diapers, taking her temperature, changing/removing her hand and foot splints and giving her hands, feet & legs a nice massage with some stretching. This is something we always look forward to, makes us forget that our circumstances are different from other new parents. In this video, Skyler’s Dad is changing her diapers. Before she always has seizures or spasms during her four hour routine, but now at 6 weeks old, she doesn’t seem to mind and appears to enjoy a little bit of activity.

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This video was taken just two days after Skyler’s g-tube and fundoplication surgery. Due to Skyler’s frequent muscle spasticity and seizures it’s very rare to see her smile. We were very lucky to finally catch her smiling and fortunate to be able to share it to the world.

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