It’s been nine weeks since Evie was born and she’s getting very big. Things haven’t improved yet however and she is still seizing regularly, and her doctors don’t want to medicate her further unless her seizures start to interfere with development. Because she was a little bit premature as well, she’s got an extra window for what we would consider to be developmental delays.
At nine weeks she:
– Has just started to smile at us again, after stopping smiling for weeks when the seizures started.
– Sleeps upwards of twenty hours a day. She slept all night last night, fussing around feed times (when I dream fed her), before waking this morning, feeding, seizing, and falling back asleep. She was alert for 20 minutes, max.
– Very rarely cries. At all. She’ll give a bit of a shout if she is uncomfortable and she grunts and fusses a bit when she’s hungry, but the only time she really cries is if she’s getting tired again – or if she’s cold during a nappy change. Even then I don’t think she’s sustained any crying for more than a minute. Crying obviously takes energy she doesn’t have.
– Is still having upwards of 20-30 seizures a day. Yesterday she had three long seizures back-to-back – I caught the last three minutes of one on video. It feels a bit strange to still be uploading videos to youtube when her doctors still can’t tell us what is going on, but who knows – maybe someone will see it and give us extra information.
– Still has only sporadic vision. Yesterday she spent around 25 minutes looking and smiling at her father, before losing it again. For Evie, focusing and looking takes energy she doesn’t really have. She can definitely see sometimes, but other times, it’s like dealing with a blind baby. She knows our voices though and while she still startles if I pick her up without talking to her first, she calms down once I tell her it’s me.
– Still has poor head control.
– Is absolutely adorable cute. Especially when she’s awake and visually engaging, but even when she’s asleep.
– Has just woken up.
So utterly gorgeous 🙂 What a darling little cutie!
Aaawww!!! She is so beautiful man 🙂 Strongs for you lady, you’re an amazing mom! xxxx
She’s so cute! What a major set of events she’s been through in nine short weeks. I hope more good news will come soon
She is so beautiful! Love these pics!!
Oh how I live that middle picture, she is adorable! Hugs to you all, hoping somebody might recognize something in the videos that help xxx
She’s such a cutie 🙂
Love that smile
Awww, look at those perfect little ears and smooshable cheeks!
I was talking with someone who works in a hospital yesterday and she said that seizures can sometimes partially detach the retinas, and that would explain why Evelyn can sometimes see you and sometimes not. So it seems her vision will be fine once the seizures are either under control or stop altogether.
She’s just adorable, you guys! I think she looks way more like her daddy than Isaac did at this age, or is it just the photos?
With all my heart I hope you get some answers soon.
x
Omg, she is soooo cute!! Love those pics!!
V, she is adorable. It’s heart wrenching to read this though. You and Nathan are beyond good parents. What it must be like to be parenting two older kids as well as this little beauty….I admire both your fortitude and your love…endless love for your dear sweet baby girl who just cannot tell you how things are. Bless you dear V. Xxxx
She is so gorgeous, sweety. Really hope you get answers soon babes. xxxxx
She is so, so, so beautiful. You are amazing. I hope those damn seizures disappear as rapidly as they appeared. A-M xx
omg, she is just so cute, just want to squish her lol 🙂
Beautiful babe xxx
She’s absolutely gorgeous. So precious. I hope you find answers to her seizures. Such a tough time. Hoping for a miraculous recovery. xx
Very hard to read, must be incredibly hard to go through. So relieved though that she is seeing, even if it’s intermittent. Love you to you and yours. xxx
I have bad internet manners…have been reading your blog for years and never comment. Your little girl is absolutely gorgeous and I hope you get answers soon! Have the docs done a genetic micro-array yet? If it is something in her DNA at least you would know and have an answer and go from there. I knew something was up with my little girl at 9 months and everyone told me I was crazy until I forced her doc to do genetic testing at 12 months. Keep your chin up, hope the baby is well soon 🙂
She is gorgeous!!!
cutie 😀
Love – love – love those cheeks!! What a sweet girl. Sending lots of love and light your way!!
Oh that gorgeous smile 🙂
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