8 weeks seizure-free

A month has gone by and I haven’t had time to post!  Things have been very, very busy.

Firstly, on the infantile spasms front, we’ve gone just over 8 weeks without a spasm (I think). This is great news!

happy_vivian_5_months

Vivian still has some very strong startles sometimes that make me wonder if they are spasms, but it’s really hard to tell. It only happens in the morning, and I only really see her in the morning on the weekends, so it’s difficult to really get a good sense. Ben says she doesn’t really do it that often. I don’t know. If it keeps happening I’m going to try to get some on video to show the neurologist.

Last weekend she may have had an absent seizure (not a cluster of infantile spasms), which lasted for some time and I recorded and sent to the pediatrician. Our neurologist said if it was just a one-off it probably didn’t do her any harm, but to watch and wait to see if there are any more. It was pretty freaky- her eyes would go to her left, over and over, and she seemed unresponsive during it.

We have no follow-up scheduled with her neurologist any time soon that I am aware of.

On the feeding front, things are slowly improving. We had a pediatrician appointment the week before last. Vivian hasn’t put on any weight, but she hasn’t lost any. We are still working on getting her feeding intake up. It is very slow going. They want us to get her on a feeding schedule so that she doesn’t snack all day. So for now we space out her feeds to have gaps of 2 hours without food, to get her eating a bit more at each feed. It seems to be working, and has resulted in her sleeping at night a bit better as well. If she doesn’t start gaining weight again, I think we will have to consider fortifying the breast milk she gets with something extra to pack in some extra calories.

We are battling oral thrush yet again. Her pediatrician suggested we try Nilstatin for another 3 weeks between appointments because she was off the steroids, but it didn’t work, so back to fluconazole again. We have another week left of that. Hoping it works. We won’t be seeing her pediatrician again until after Christmas, so if it doesn’t, will have to get her into our GP, I guess.

Developmentally, Vivian is still doing things at her own pace. No rolling over yet, but half rolls each day. She has started touching her knees with her hands, so we think she will find her toes eventually! We are still working on her grip as well as she keeps her hands closed much of the time.

Her therapists are still pleased with how far Vivian has progressed in the past two months. We are able to transfer her much easier than before, from capsule to floor and vice versa. We maybe get a meltdown every other day instead of multiple times per day. Verbally, she still sings to us every day and has started saying ‘m’ and ‘w’ sounds, so we get some mumbled ‘mum’s when she’s upset and a few ‘wa’s here and there. She’s also working on her squeal sound- not quite there yet but getting there.

I got my first real rolling giggle last night. It was pretty amazing! She has turned out to be very ticklish when she’s in a good mood and doing little tickles up her sides makes her giggle for ages. Ben, however, has been getting these real giggles for about a month now. He’s just funnier than I am :)

On the hearing front, we now have Vivian’s hearing aids. She only wears them for about 10 minutes at a time when she is awake and in a reasonably good mood. We have been so busy since we picked them up that she hasn’t had them in every day like she should have though. We are working on that. She gets pretty quiet when she has them in and likes to listen to music and our voices from across the room.

The part that sits inside her ears is purple, with glitter (pretty styley!); this part will need to get remade every month or so as her ears grow. The outer part is a pinky-purple color and won’t change color. We get two or three sets of these through the public health system for the next five years,  I believe. We were advised to get these itemized on our contents insurance policy, in case we need extra sets. Apparently once babies discover their ears, they get tossed and lost quite a bit.

Vivian's hearing aids

We are also now scheduled to get her vision checked, as her pediatrician voiced some concerns at our last appointment. We’re unsure as to what her vision is actually like. She does focus on faces and eyes sometimes, but other times does not. Whether this is due to the distance you are away from her, or something else, I guess we will find out.

On the overall home front, we finally moved house. The house I mentioned in my last update fell through the day after I posted, so the next week was spent frantically looking at more houses and trying to secure a rental. It was probably one of the most stressful weeks we have had since Vivian was born.

A place right around the corner from us popped up and we signed the lease the following week, so we were sure it wouldn’t fall through. Then we had a huge garden clean up at our old house, which was amazing. Some of my wonderful workmates and a few of our awesome friends came over and helped with this. Our yard went from a jungle to a respectable-looking garden in about 5 hours over two days. Many thank yous to everyone who was able to come! <3

We moved the next weekend after that and again some awesome friends came through for us and managed to lend a huge work truck, which made things go very quickly. It was a bit stressful for me because I was watching Vivian on moving day and couldn’t really pitch in like I normally would (yes, I am a bit of a control freak when it comes to moving house). I didn’t really get to help unload anything at the new house, which meant it was hard to unpack things quickly because I didn’t know where anything was…nothing being labeled when packed may have had something to do with this too (coughbencough). We are still unpacking this week but we don’t have much left to do, thank goodness. It could be A LOT worse, so I am not complaining!

The new house is a bit on the old side, but it will do for the next few years for us. It is $10 a week cheaper than our previous house, which is an added bonus! Everything else we were accepted for was a the top end (or over) our budget and that really wasn’t an awesome feeling.

I feel like there is so much more I could write about in this post, but it’s already incredibly long now as it is. I will save things for another blog post.

Hoping that you are having a happy Thanksgiving weekend over in the US and a lovely weekend everywhere else in the world. Will try to not go as long between posts so they aren’t novels in the future!

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5 Comments (+add yours?)

  1. mrsstaceydodd
    Nov 30, 2014 @ 14:01:07

    Really glad you’re settling into your new place. Such adorable hearing aids with the glittery effect! Very wonderful that you are getting some yummy giggles! They’re the best! Xo

    Reply

  2. Leah Hunter
    Nov 30, 2014 @ 19:55:34

    LOTS of cuddles! So glad that you’re moved, and thankful for your awesome friends who did the garden cleanup and helped with the move…Golden.
    the pictures of Vivian are amazing. we love them and you three. You could write a book, I’m sure, and it wouldn’t be too long Gwen. I love every sentence. Love and prayers Aunt Lee PS. I don’t look at email every day and feel blessed to have looked tonite!!

    Reply

  3. paulettemotzko
    Nov 30, 2014 @ 23:00:30

    God bless you and your beautiful baby. I was diagnosed at age 9 with complex partial epilepsy and am 53 years young now.

    I created a newsletter called Your Epilepsy Resource I created to help people like you.
    If one piece of information gives you insight in some way to help your wonderful baby become seizure free…I would be eternally happy.
    I am the former director of The Epilepsy Foundation in Orange County & The Epilepsy Connection.
    My email is
    TotallyInspiredPC@gmail.com.
    Email me and tell me who you are…from the blog 8 Weeks Seizure Free & I will send the long link to the free newsletter to you.
    Is your name Vivian or is it your child?

    http://www.TotallyInspiredPC.wordpress.com

    Paulette Le Pore Motzko

    Reply

  4. paulettemotzko
    Nov 30, 2014 @ 23:01:25

    Reblogged this on Totally Inspired Mind….

    Reply

  5. Christy Krpicak
    Dec 08, 2014 @ 14:49:20

    I love youu blogs Gwen long or short. So glad you guys are moved in and thank hod for all your wonderful friends for all of there help. Vivian’s hearing aids are very stylish and she is beautiful. Keep up the post as I love hearing all that is going on..love ya, Christy

    Reply

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