I hadn’t had enough sleep when my children started to argue this morning. Amy reacted (poorly) to Isaac calling her a pufflehead and Isaac reacted (loudly) to being called a ragamuffin, because don’t you know that is all WRONG, because Amy is the ragamuffin and Isaac is the pufflehead.
In case you can’t tell, my children have a lot of hair. Tangly, messy, big hair. Amy looks rather Russell Brand-esque this morning in fact.
And the whining. My GOD, the whining.
The school holidays are finished and it feels like I spent most of that time in the hospital with Evelyn. I might be a little bitter about this, as I struggle with a lack of sleep today and children who seem equally tired.
Evelyn had trouble staying asleep last night. Every time I settled her, she’d seize and wake herself up again at the end of it, crying. The medication hasn’t helped with the seizures at all, but it has made her incredibly sleepy. Which would be okay, provided I could sleep too, without someone shouting, or pulling hair, or demanding that I attend to their wants. Apparently I am the only one who can feed them, or something bullshit like that.
We’re in this weird limbo at the moment – the baby is still having seizures, the metabolic results still aren’t back, her current medications aren’t helping and we don’t follow up with her Paeds team until Thursday.
Thursday is alternately very soon and an age away. Time is fluid when you’re dealing with something like this. Elastic and taffy-like, stretching and drawing together.
So, we wait.
There’s an awful lot of waiting in situations like this.
Waiting is hard. I do love the fact that “pufflehead” has become an intergenerational name. As I recall David reacted poorly to being called a pufflehead as well. *grins*
I am also loving the pufflehead. Indeed, also the ragamuffin 🙂
Elastic time is sticky and difficult and altogether not fun. I hope the week isn’t too difficult and that Thursday brings something useful for you.
Also, kisses to Miss Evie, and hugs to you all. We’re still petitioning the universe on your behalf daily.
It has been a long two weeks … school goes back tomorrow, which is yay! for me and probably not so yay! for the kids. Haha.
Sounds like not so great a night for you and the little Miss. Playing the waiting game, especially when the health of a little one hangs in the balance, and the future is not so certain, is not very much fun.
Hopefully, Thursday will come round quick for you and hopefully things will get moving along for you and Evelyn.
sending hugs and will be thinking of you both xo
Thursday is forever away. I know this as I am waiting on Friday when I hit that magical 34 weeks where if something happens I won’t have to go to Sydney.
I imagine having the school holidays in hospital really sucked. We have just started holidays here and in hospital is where I will be.
Anyway. I really hope Thursday comes with some answers and a plan.
xoxo
Elastic time is so difficult to deal with. Makes you feel all out of place
I hope that by Thursday you get some answers
In te meantime try to distract yourself
Much love and light
Xxxxxxxxx
I’ll be keeping Evelyn & you in my prayers. I hope they figure things out soon.
Pufflehead! I love it! Ragamuffin too, but I’ve heard that before, Pufflehead is new to me.
School holidays are just beginning here, the supermarkets are going to be so crowded…ugh!
I hope Thursday brings all kinds of good news for you.
I’m following along with my heart in my throat for you. I know this elastic Time you speak of. It’s ability to be infinite and speed up when you don’t want it to. When you sit holding that baby while she seizures and watch the other children going about their day as if you are in two places, outside your body and yet not fully present in either place. I know this waiting game well and it’s not a fun one to play as there are often no winners. Hugs to you and your precious puffleheaded ragamuffins. Xo
I hope Thursday comes quickly and you get the results and good news! Also, I hope you get some sleep soon…
I hope Eve’s EEG results are being interpreted by a paediatric neurologist, in tiny babies it is incredibly difficult to interpret the results. Complex cases may need further referral to a pediatric epileptologist at a comprehensive epilepsy center. I say this because as you know epilepsy is another of our families conditions. It may be worth ringing to say the med’s are not making a difference to the seizure’s. (although they may know this already from you) I don’t have enough information to know what you have been told about appropriate dosage etc. especially in a newborn Veronica. But just because the next appointment is on Thursday, it does not mean you cannot inform them that the pheno is not working. An incredibly tiring, stressful time for you and Nathan. Along with trying to normalise everything for the other two. I imagine, Amy possibly internalising much of the stress about having a poorly little sister. Isaac and Amy’s argument reminds me that no matter how stressful life in a family is, it is the most ridiculous of sibling arguments that can blow up into chaos and at the same time remind one that family life is beautiful. I hope for your sake and hers obviously, Amy feels better soon as the time at school is at least a little bit where you have only two to look after. I am worried that the ongoing sleep deprivation you are suffering is taking its toll on you Veronica. I know my son was much older and therefore able to verbalise about his situation but I found that some people as soon as the word, seizure, crisis, or fit which is a word I hate were mentioned, left my life, it seems even these days there is a great deal of ignorance surrounding the condition. I hope with my heart that you have some answers on Thursday. With tiny babies it can be so difficult to determine the reason for seizures and it seems as though life is turned into a waiting room. Not knowing can be a very hard burden to bear, I know. The type of crying Eve does post seizure may be part of the seizure albeit indicating that its nearing its end. If I am a little right in any way, it is different to the type of crying when a baby is hungry for example. Forgive me if I am wrong. You are a strong strong woman Veronica and although you would walk across hot coals to take away her pain, I know you will deal with this time, with dignity and love. I just wish I could be nearer to hold your sweet girl for you for a little while, while you catch up on some sleep. Thinking of you all and still holding out my virtual hand to you.xxxx
I charge half a dollar per minute to listen to children argue, and I simply cannot understand the language of whining. Usually I’ll say, “I’m so sorry, I think you just said something I was supposed to understand, but I can’t understand whining! Please try again?”
🙂 I am sending you love, woman. I cannot fathom the intensity of having a baby with seizures, and I know how frightening that can be. I do work in neurosurgery, which is closely related to neurology. So if I can ever help in some way – looking up information, journal articles, etc. Please let me know. It would be my pleasure.
Sending prayers and love. Have nowhere near the knowledge your other friends do but I’m listening and hoping with everyone as well…
My heart goes out to you beautiful Veronica. Hang in there. Xx Jess
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