We saw the neurologist for Evelyn last week. The official line is wait and see. We don’t know anything and we won’t know anything until she starts to display differing symptoms as she gets older. It’s hard, this wait and see. Wait and see if she improves, or goes downhill. Wait. See. Horrible. I have a phone appointment with our Paediatrician tomorrow to get the results from her last lot of blood tests and that’s it until after Christmas.
Encouraging things though are this:
This is Evelyn holding her head up briefly the other day. It didn’t last long and she hasn’t been able to repeat it (I say she’s storing up energy for next time) but she did it and I am so very proud of her.
Yesterday she giggled for the first time. I nearly cried.
Everything else continues along steadily. She’s still having episodes regularly, she still sleeps more than any baby ought to – especially a baby who is over four months old – and her eyes still aren’t great.
But she is deliciously kissable and every little thing she manages is a huge achievement. Go Evelyn.
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Isaac saw the doctors too regarding his stomach issues and we’re looking into starting the FODMAP diet with him. I expect the adjustment period to be a bit hellish, but we hope it’s going to help. Just waiting on seeing the dietician now.
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I held Evelyn’s feet in my hands and kissed them until she smiled at me. I looked at them; at the silvery scars on her heels and the remnants of failed cannulas and I tucked them back under her blanket for her; safe from air and touching and harsh needles.
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I’ve been reading a lot. This year has been rough and I’m ready for it to be over. I keep dreaming that my grandmother is alive and that everything is okay with Evelyn and then I wake up and nothing is right. I’m not as mentally healthy as I could be, but I suspect a lot of that will be fixed by the holidays. Until then, I’m reading and I’m writing and I’m kissing my children.
How are you?
Comments
18 responses to “Wait and see.”
She is adorable! and she’s making progress, that’s good. Hang in there.
Your children are delicious and eminently edible. Thinking good thoughts for Evelyn.
Hey there – she is beautiful, and I truly hope that you get more answers than wait and see soon for your gorgeous little one.
I love that she giggled xxx
That little face! I’m do glad your evie has some good things going on right now. My evie had just been diagnosed with proper asthma so I’m frantically learning everything. I spend a lot of time kidding my children too, it’s good fort mental health. Love to you xx
That warmed my heart V. Glad you can see some sweet little changes. The photo of her with big bro is lovely. I do hope that some peaceful times are coming up. Love D x
WOW she is so cute. How does she hold that head up? Her head is HUGE compared to the rest of her body. The weight of those sweet chubber cheeks alone makes it a monumental effort! Give her a snuggle for me! I am hoping for unexpectedly good things as she ages.
Oh, those little toes! Evelyn is the sweetest, squishiest baby. “Wait and see” is so rough. Keep reading and writing and kissing your children sounds like the best you can do in the meantime. I hope answers are coming your way soon.
I still want to smoosh those adorable cheeks
I’m sorry you don’t have any solid answers.
Sending love
Oh god Veronica :: tears up ::
That photo of her feet and your comments, so beautiful and heart rendering.
Sending you all the strength I have to help you get through these days.
Go Evie 🙂 The kind of stress you are under is difficult to fathom. Thank goodness you and your husband are young and strong and have family support and love. Why does our brain torture us with dreams like that? Maybe just to give us some surcease from the unrelenting worry and grief if only for a few hours.
I wish, as always, I could offer more than sending my love.
Oh, that must be so so hard to not be able to do anything and to just have to wait. I hope the adjustment for the diet for Isaac goes as smoothly as possible.
Go Evelyn! Great that she giggled!
Think of you often, and send my love and positive thoughts. I love your updates, especially the photos of your adorable children. Despite all the hardships, I think your kids are incredibly lucky to have you two as their parents! I agree that Evelyn looks very kissable – hold out for the miracle, it may just happen yet!
She’s just gorgeous. Loving that she’s making some milestones, that must be so exciting. I’m so sad to hear you’re in such a dark place, and I do hope you reach out when you need to, as I’m sure there are so many of us here if you need us:)
Oh Veronica, I wish those dreams were true. Sometimes it’s so hard to accept our reality, and yet that’s all we have. So kissing your children, and cherishing their darling little feet is the best thing to do. I think about Evelyn often. Her face is seared into my mind’s eye and it comes to me at different times of the day. I keep thinking about those five seconds when she held her head up and how your heart must have soared.
What gorgeous photos of Evelyn and Isaac.
I’m glad that Evelyn has held her head up, even if only briefly, and that she giggled (how lovely). She is beautiful.
I’ve been on the FODMAPS diet for a year so let me know if you have any questions I can help you with.
Such beautiful children. Yay! Go Evie for holding her head up and having a giggle!
Just did a quick search about the FODMAPS diet and from what I’ve read so far, it looks interesting. Keeping my fingers crossed for you and Isaac that it works.
Good luck with the blood test results as well.
Sending (((hugs))) and well wishes to you all. 🙂
Look at those sweet toes!
And yeah that she’s holding up her head like that…. three cheers.
M