Seeing as this is leap year and so Evynne actually has a birthday on February 29, we thought we'd pop in and celebrate her life and achievements! It's been an entire year anyway since our last update. It's been incredible to see the mercies of God upon her life and to be able to see her happy and healthy on her very first "real" birthday.

Evynne has made spectacular gains in all areas. Perhaps most notably is her new-found ability to walk! Since this summer, we decided to double up her physical therapy visits, utilizing both the school PT and also a PT with pediatric expertise in an outpatient clinic. Starting in the late summer she began to stand up on her own and now since Christmas, she's started walking by herself without the use of her walker. We will be picking up her next pair of AFOs (ankle-foot orthotics) soon; she has grown so much she has been needing a new pair about every 6 months. Her braces help immensely with her stability while walking and she will usually ask to put them on. She's still not very good at balancing and we use the walker for any long distance or in populated area. She falls often-- and the downside of being potty-trained is that there is no cushion on the rear end anymore-- but she is extremely determined nonetheless. A few of her favorite phrases are "By myself!" and "Show me how." 

And speaking of speaking, Evynne's language use has skyrocketed. She's always surprising us with new phrases and clever insights. She understands everything that is going on, and while she still has a significant speech delay, she is able to make her needs known consistently. When she was evaluated for special education at preschool last year, her speech and language scores were the lowest of all categories, lagging far behind her cognitive skills. With that dissonance came a sense of frustration and some negative behaviors, especially manifesting in scratching others. We are so happy that Evynne's frequency of scratching has dramatically decreased as her language and overall development has progressed. She still has lots of room to improve in her peer interactions, which gives us reasons to be thankful she can attend preschool for free 4 mornings a week. 

Evynne had one more big seizure this summer that took us back to the ER, but we were thankful to be discharged home with an extra medication to help prevent breakthrough seizures instead of being admitted to the hospital again. She continues on her medication Keppra everyday and we have an extra medication we give for when she's sick with vomiting or a fever, since that seems to be a big provoking factor. 

She got glasses this year and they have made a huge difference in how she interacts with the world, especially in her preschool classroom. Her cortical visual impairment (CVI) presents a bit of a barrier in the classroom, impacting everything from story time to crafts to navigating around people and objects, but she's working with a teacher of the visually impaired who has been a huge help in implementing strategies to improve her access in the classroom environment. Besides the CVI, Evynne still has strabismus (crossing of her eye) on the right side and nystagmus (shaking of the eyes) bilaterally. We put a patch over her strong eye for a couple hours a day in order to help strengthen her weaker eye. We travel to Denver every four months to see an ophthalmologist about it, as it's still possible she'll need a correctional surgery.

While Evynne still uses a g-tube for her nutrition and  hydration, her feeding skills have come a long way. Her abilities to chew and move food around with her tongue have decreased the number of times she chokes and vomits on oral food, though it still does happen from time to time.  Her favorite foods include chips, bacon, and 'cumbers (her word for cucumbers). She is always up for trying new foods and has learned to spit them out instead of vomit them out if she doesn't care for it. We tried a new procedure this year to improve the vomiting, a Botox injection into her small intestine to speed up digestion, and it really seems to have helped improve her tolerance of her g-tube feeds. The downside is it wears off after a few months and has to be done under general anesthesia, but it seems to be worth it. She's been gaining weight very well over the past 6 months or so since we've begun the injections. In fact, at our latest visit with the GI doctor, we have started formulating a plan to wean down her g-tube feeds this spring in order to coax her to eat more by mouth. I could never had guessed we'd ever get to the point where we would talk about getting off the tube!

The last swallow study showed improvement in her ability to manage liquids. We still need to add a thickener to her drinks, as she sputters and chokes on thin liquid, but she's now a level 1 instead of a level 2. (Regular water is level 0.) She has been working on drinking from an open cup, which is quite a challenge for her but she is extremely motivated and loves practicing.

At home, Evynne's favorite things include doing dishes, taking baths, vacuuming, and playing with magnet tiles. She also mostly enjoys the company of her brother, though some of it just looks like bossing him around. (She's really good at the "z" sound, which is unusual for someone with a speech delay, but it's probably because she says "Zane! No!" all day long.) Her most favorite thing is just to be involved in helping around the house (hence the vacuuming), frequently uttering the phrase "Mama, I help!" as she accomplishes things like setting the table by using every piece of silverware out of the drawer.

Her strong spirit and feistiness that served her well in the NICU days is certainly alive and well. While it lends some challenges to parenting, we are so thankful that  her stubbornness also presents itself as a resiliency to overcome her many challenges. And many challenges she has had! Sometimes we stop and think how different her life was four years ago, and how thankful we are that God has brought her to this point, happy and healthy.