Epilepsy Means to Me

A post about what epilepsy means to a parent.

While Vivian’s epilepsy is controlled at the moment, it doesn’t mean that it always will be. So far we have been lucky to not see any more infantile spasms clusters or seizures, but we may not always be so lucky.

Epilepsy rarely stays the same in anyone.

Hoping that Fiona’s mum is getting some sleep tonight. I thank her for writing this.

Star In Her Eye

I’m usually late to parties, and last Thursday it was Epilepsy Awareness Day. So I’m arriving today. Here’s “what epilepsy mean to me,” as they say.

Epilepsy means that Fiona and this kit are never separated.

IMG_2433-0 Sealed, rectangular Tupperwear container with plastic syringe inside.

Epilepsy means this kit goes into the diaper bag, into my purse, wherever Fiona goes. Because inside the kit is the medicine to stop a seizure if it happens and if it goes on too long.

Epilepsy doesn’t mean that a person who is seizing can swallow his/her own tongue. I first learned this in a Cincinnati hospital after Fiona’s first seizure. That is one enduring myth, I thought. I was 33.

Epilepsy means that, when my husband and I went on a date the other night, and I found this Guide to Troubled Birds,

Book: Guide to Troubled Birds Book: Guide to Troubled Birds

 I thought…

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Goodnight Eva

Life just isn’t fair.

I haven’t been following this blog for terribly long, but in the short time I’ve been following Eva’s story, she has truly captured my heart.

I don’t have the words to express how deeply sorry and saddened I am and how I wish I could wrap Eva’s Mum up in love.

I am so sorry about your Peanut. She touched so many hearts.

What a difference a day makes.

Yesterday I was excited about Eva’s new high chair and today there is no Eva to sit in it.

Last night at around 9pm Eva woke crying. Both I and my amazing and brave housemate Ess went into comfort her. Ess passed her to me and we could tell something wasn’t right. Eva was taking great gasping breaths. Then suddenly she stopped.

She started to turn purple around the lips and it was at that point that Ess took over, putting Eva back down and starting chest compressions. We kept going until the ambulance and fire trucks arrived and then they took over. By 9.30pm they gave up and let my little girl relax.

A simple cold one day, and gone the next.

I don’t have clever metaphors today. I don’t have creative flow or inspired words. I have all encompassing grief that abates…

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Keep Reaching!

Another week (and a bit) done and dusted!

Last week, Vivian’s reflux was acting up a bit, which means we’ve been revisiting intake land, and have had to up her Gaviscon doses accordingly. She’s been struggling a bit to pass everything with needing this much Gaviscon, so when we go to see the pediatrician at hospital again, we will be asking about alternatives to Lactulose, which apparently is very dehydrating.

Monday we went to the Champion Centre and Vivian only stayed for a half session. She woke up at an awkward time, and was due back to bed when we needed to be there, so she got pretty tired about half way through and had had enough!

Throughout the week Ben has been working with Vivian on her rolling and sitting. So far she rolls to her right much easier than her left, while on her tummy. She doesn’t like putting weight on her right arm to push over to the left, so that’s what we’re to focus on now. That and weight-bearing through her elbows, and getting her wrists to turn in towards her face (think of a baby doing little bicep curls).

Her ACC physical therapist was really pleasantly surprised about how well she is picking things up, like touching her toes. While she doesn’t do it unassisted on the floor yet, she does try at least and got her toes a few times while we have been relaxing on the bed. After Vivian warmed up with the PT, she attempted a few quick toe grabs while we were talking above her, which is great.

Vivian Toe Touch


Vivian’s little personality is starting to really show during these therapy sessions. The therapist can try to get Vivian to look turn to one side and Vivian will instead keep her head straight and turn her eyes. Cheeky! She is a sucker for a really sensitive snail toy that a lovely Mum sent us from up north; she found the toy too noisy, but it’s awesome for Vivian because it provides instant feedback when Vivian makes a move. Eventually the snail gets the better of her and she will turn for it.

After her PT session, Vivian had a quick play and then we zoomed off to get her fitted for her very first pair of glasses. Unfortunately they only come in two colors (guess which ones) but they should be pretty darn cute. Vivian’s really not going to love them touching her face unfortunately, so we will need to work with her to desensitize her to having them on. If all goes well we might be able to pick them up this Friday after Vivian’s hearing aid appointment.

This is Vivian’s latest sound discovery:

What I was actually trying to record #babyyodeling #hopeforvivian

A post shared by Gwen (@gwenami) on

This week we have Vivian’s pediatrician appointment coming up so keep your fingers crossed that she’s put on a decent amount of weight, please :)

Hope you have a wonderful week!

Next Steps

Vivian’s doctor appointment on Tuesday went better than we expected.

She has had no further seizures since Monday afternoon; the neurologist wanted us to get more of her seizures on camera and of course as soon as he said that they (thankfully) stopped.

After asking tons more questions about Vivian’s spasms, the neurologist suggested we stick with Vivian’s current medication for a bit longer, because she isn’t having daily seizures like some babies with infantile spasms do. He said there is a small chance they could go away while on the current medication, so we are keeping our fingers crossed that it happens.

He also confirmed that Vivian will be having an EEG done this Tuesday, to find out what we can see. I am very happy that they are finally moving in the right direction on getting all the information we can about what’s going on with Vivian’s brain.

We also talked about next steps if Vivian continued to have more spasms; the doctors gave us a prescription for prednisone to get filled immediately if she does have more, so we don’t have to wait around for someone from the hospital to get one for us. The recommended dose is enough for an adult with acute arthritis…a lot for a little baby. The side effects are daunting – irritability, rapid weight gain, facial swelling, high blood pressure, immunosuppression. The list goes on.  I really hope we don’t have to get that prescription filled.

If we have to use it, she will most likely be on the steroids for 6 weeks. If they don’t work, we move on to the vigabatrin. It looks like we will not have to look elsewhere to get the treatment we need for her now that we’ve put a plan in place with her doctors on what happens next and we’re getting her EEG done, which is a huge relief!

The rest of the appointment went fairly well; Vivian’s pediatrician was impressed with the video clip I included in the last post. I don’t think she expected Vivian to be so active and happy. Vivian was actually very settled during the appointment. So much so that when the neurologist tried to get her to fuss at him, she wouldn’t. She just cooed at him instead. He had a super calming effect on her- we told him we needed to have his number so he could come soothe her when she was inconsolable for us.

We also discussed her treatment for reflux and are sticking with the current medications at the moment (gaviscon, prilosec) and assessing again in two weeks, with the speech and language therapist.

Vivian even managed to gain weight between Friday and Tuesday, when we were so sure she would have lost weight from having the rough weekend due to having seizures and low feeding volumes. Some days she has excellent feeds and others she doesn’t. There is no rhyme or reason that we can discern, and when we don’t know why she is having a crap day of feeding it really takes its toll on Ben and me, especially because of the weekly weigh-ins by the Neonatal Outreach nurse. We have spent so much time stressing about how much she is eating and feeling  pressured to get as much milk into her as we can. It’s enough to make you cry on the bad days when she’s screaming and won’t eat and we can’t figure out why.

The only bad thing that came out of the appointment is the discovery that Vivian’s head circumference hasn’t grown at all since she was born. The pediatrician said we would need to keep an eye on it. Of course Googling this led to me reading up on microcephaly, which can lead to even more developmental delays and can also cause seizures. Add that to the list of secondary diagnoses stemming from Vivian’s rough start. Trying not to worry about that too, now. Failing! I guess that’s part of parenthood?

Bonus: Vivian didn’t really cry on the trip to and from the appointment. Definitely a first! Here she is in her car seat, watching the world go by:

Watching it all go by


I think her eyes are turning brown. I told her to stop that. They are meant to stay blue, damn it.

Hope your weeks are going well. Leave us a comment and tell us what’s going on in your world.

Staying hopeful

Vivian started having more seizures last night, so the doctors finally scheduled an EEG for her – possibly within a week or so – and it looks like we will be changing Vivian’s medication after our doctor’s appointment tomorrow. The increased dose of her current medication is obviously not working :( As unhappy and terrified I am at her having more seizures, I’m glad our doctors are finally on board.

The seizures only happen when she is on her back, which is very strange. This led to a very exhausted family last night after 5 hours of nonstop crying due to seizures every time we would get Vivian settled. Ben and I were just beside ourselves as it looks like she is just so afraid during them and then afterwards is so inconsolable. She ended up so exhausted that she passed out on my chest (very rare) last night and today we finally figured out that if we prop her on her side they don’t seem to happen, so for now this is our solution:

Side sleeping

We were going to take her into the hospital again, but the registrar called and said there really was no point, as there is nothing they can do for her in the short-term. This was very discouraging and frustrating to hear, but later on we actually spoke to the neurologist via phone and got a lot more solid information from him about where to go from here, including a more thorough explanation of why an urgent EEG isn’t going to change our options at this point now that the Keppra (levetiraceatam) isn’t working.

The neurologist clarified what the pediatrician was trying to say on Monday: because they are sure these are infantile spasms, the main thing to do right away is to treat the seizures, not what we would see on an EEG. If they weren’t positive these were infantile spasms, they would be getting an urgent EEG done. Because any of the new medications we could try will take at least 10 days to work, the EEG we (now) have scheduled will still show the abnormal patterns of the infantile spasms and the abnormal patterns caused by Vivian’s brain injury.

So, the follow-up appointment tomorrow is still when we will figure out what the next steps will be.

I still don’t think they are giving Vivian much credit in the developmental milestone department, but at least he didn’t say they aren’t expecting much because she already has brain damage. Still not a perfect run through what I would have liked initially (I would have liked her to have already had an EEG done, or for them to have already scheduled one when we first saw these seizures), and definitely not the same thing as “we’re only treating these seizures because they are making her uncomfortable, not because they will affect her outcome.”

The neurologist also said we’ve caught them very early, and that he wouldn’t worry overly much about them causing much developmental regression now. He said if the seizures were left untreated for 3-6 months he would worry more about developmental regression, because they have a cumulative effect.

The two main treatment options we have to consider now are either steroids (prednisone) or a drug called Sabril (generic name vigabatrin). Each of them have some pretty hefty side effects, but due to Vivian already having possible renal impairment and possible vision problems, I think the doctors will suggest we try the steroids first. Still pretty afraid at this point, but a bit more hopeful that our doctors will actually be working cooperatively with us to try to get these seizures gone. I am hopeful that we will not need to change hospitals or look at going to Starship in Auckland.

I know that infants with symptomatic cases like Vivian have a harder time achieving seizure free status, but I will continue to have hope that Vivian is one of the success stories so she can have many more happy, seizure free days.


I recorded this yesterday before she started having more seizures. She is 10 weeks old today. Time has gone so fast. Tonight the seizures have stopped, and she’s been able to be settled to sleep pretty easily. Keep your fingers and toes crossed for us, please!

Also, a huge, gigantic thank you to everyone who has been praying for us, and to everyone who has contributed to Vivian’s Givealittle fund. The generosity we’ve been shown is so amazing. It’s good to know we will have some funds available to go to Auckland if we need to, and if we don’t, for whatever Vivian may need to help along her journey. Ben and I can’t thank you enough.

Golden summer days

Hello again.

I know it has been far too long since I last posted.  Work has eaten me up and I haven’t had much time to garden or do much else, aside from catching up on housework & laundry on my days off.  I also left our old faithful digital camera outside during a fine, misty rain a few months back and my phone’s camera is not as good as that one.  So my photographs have all been very fuzzy and not post-worthy.

On the garden front, not much is happening because I have no time!  It’s been a tad disappointing to have let my veggie garden get completely overgrown, but one day I’ll have it weed-free again.

Finally caught up on laundry today so I harvested our two tubs of Agria potatoes.  They are so golden.

Picture of this year's Agria potato harvest

The summer is flying by- we’ve been to the beautiful beach a few times and have had very lovely sunny days here.

My succulents on the porch are all very happy and low maintenance, which is awesome.  Finally found the name of my favorite one!  It’s a sedum rupestre ‘Angelina’.   Very happy flowers :)

Secum rupestre 'Angelina' bloom

Also, the first tree in our backyard that flowered this spring is a plum tree.  I’m not sure what kind though, but  the fruit is small and sweet, with red flesh.  Unfortunately it’s up on a ridge so I can’t really get to it.  I’ve only eaten a few windfall plums that the birds & bugs didn’t get to.  The back yard smells like fermenting plum wine at the moment, and I have to clear them in order to get to my clothes line.  YUM!

There are also heaps of blackberries taunting me from up on the ridge.  I wonder if I can talk Ben into climbing up there & picking some.

Hope your gardens are going well if you’re down under!  And if you’re up North, stay warm!  Lots of snow pictures circulating through my Facebook feed at the moment.

How is your season going?

Rainy day surprise

It’s rained all day today, much to my chagrin!

I really wanted to do some weeding today.  There is this awful weed taking over the yard.  Ben’s Dad told me the name of it, and unfortunately I can’t remember it at the moment, but it was a very fitting name for this damn weed.  I will ask him for the name again, and moan about it some more.  I’m sure any kiwis reading will know what it is as soon as I name it and stick a picture on here.

I also wanted to get Mr. Courgette into his spot out front in the raised garden bed.  I think it’s time I bit the bullet and stuck him out there.  Fingers crossed that he has enough leaves to deter someone from digging him up and making off with him!

I spent today making mental lists of things that I need to do (I should really get these down on paper), watching my new favorite channel, SoHo ( I had no idea Mad Men was so good!) and ignoring the laundry that needs doing.

I did get quite a surprise, today though!  Ben must have not read my blog post about us not buying things, because he bought me a new phone today.  It was a bit of an OMG moment when I realized what he’d done.

I’ve been watching these phones on trademe for about six months now, and happened to put one on our watch list, and he bought the darn thing.  It’s a used phone, but the seller took really good care of it, so it’s pretty much brand new and we got it for half of what the new ones go for.  So it’s not new, but it’s new to me!

I feel very spoiled. Very, very spoiled.  Thank you so much, Bennie!  I am a very lucky lady.

He has get out of jail free card until after Christmas, and can consider himself to be very lucky indeed ;)

Also, I’m not expecting any Christmas presents, because it was like Christmas for me when the seller dropped the phone off.

I did tell him that we’re not getting anything else for a while.  Saving now!  And I’m studying for my driver’s license test.  I used to have one in the US, but yeah…it’s a long story and now I have to go through all the learner’s stuff here in NZ to get another one.  A long story. And not as exciting as getting a new phone, I can tell you that!

I’ve been trying to figure out everything about it (yes it did come with a book, but I haven’t read it yet) for the last couple of hours, and it does so much more than my old phone does!

I love this phone.

I did stop to clean the kitchen and get the hoovering done, so I can say I did that today.

Also, there were a few more surprises today  — now & gwen has 25 likes on Facebook!  I was so excited to see that today that I actually squeed out loud.  And, this post is the 50th post here at now & gwen.  Thank you so much for reading this far without telling me to stop.  I appreciate it!

Have you gotten any good surprises lately?

Picture source.

Today’s ponderings

Just a quick post from me today — I know I said I’d do a garden update, but after spending a lot of time outside in the sun today, I just want to snuggle with cats and watch the new SoHo channel on Sky.  They’re playing A Game of Thrones! Expect mucho garden pictures tomorrow, I promise.

Here is what I’ve been pondering today:

Should I keep blogging every day?

Yesterday was the last day of the Ultimate Blog Challenge.  I enjoyed the challenge, and completed my 31 posts, but I can’t help but feel that the challenge was aimed at bloggers who run businesses.

Even though my blog isn’t probably what that challenge was created for, I did enjoy blogging every day when I could, so this month, I’ve decided to give NaBloPoMo a try.  National Blog Posting Month was originally in November, but it happens every month, so it’s something I can stick with, I guess?  The community there looks much more varied and I think I’ll like it a lot more, and if you do post every day in November, there are prizes to be won! Awesomesauce.

I guess I don’t have to think about making that decision anymore, since it was settled when I wrote the second paragraph.

Should I put Mr. Courgette in the raised garden bed?

Mr. Courgette is doing well in his pot on the back patio, but a slug got to one of his leaves (or perhaps snail…I’ve seen heaps in the compost bin).  I’m wondering if he’s big enough for me to put in the raised garden bed without fear of him being plantnapped. I think he won’t be vulnerable to slugs & snails in the garden bed, as it’s surrounded by gravel and they apparently don’t like it?

I have compared him with a picture of Ms. Courgette when I put her in the garden bed, and she looks to be a bit bigger than he was, so maybe I’ll wait.  I’m still not sure.  The plantnappers haven’t been back, as far as we can tell.

I shall mull this one over tonight, and decide tomorrow.

Should I move this blog to my own site/server set up?

I would love to hear from more experienced bloggers about this.  Obviously I’ve only just started blogging, so I’m not really planning on moving anywhere just yet, but it would be nice hearing what the pros and cons are from bloggers who have had blogs on wordpress/blogspot/etc. and moved their blogs to their own websites.

I think the main reason I’m considering it is because I’d love to one day be able to have the kind of blog that supports itself somehow.  I guess I’d have to tie myself down to a narrower subject matter for that, but one can dream?

I would also like a bit more freedom when it comes to what’s actually on the sidebars of my blog, and the design, too.

What have you been pondering lately? Care to give me any advice on my ponderings? :)

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