No News is Good News

We’ve had a pretty low-key week here, since my last post.

Nothing major, or exciting to report, really! It is good to be able to say that. Still no spasms. A few big startles, though. Have talked with some other parents of kids with HIE and some of them have reported back that their kids have very sensitive startle reflexes still. Sounds like the neuro is hopefully right.

Ben’s been sick. So far Vivian and I haven’t caught it and I hope we won’t. Hoping he feels better this week! I know he is missing Vivi cuddles something fierce.

I flew solo on Monday taking Vivian to her therapy session at the Champion Centre. Vivian was fussy because she woke up early and then napped and then had already woken up again before we had to be there. The PT was still very happy with her progress in sitting and rolling.

Vivian did manage to roll from back to front during the week while Ben wasn’t looking. She pinned her arm under her though, which is what we’ve been working on with her, and she wasn’t too happy about it! She hasn’t done it since though.

Her Squiggle Early Activity System arrived too (took two months, though!), so we’ve been using that every day so far. It’s really helping with her sitting and working her core. She wants to sit up ALL THE TIME. I don’t understand how her little abs don’t hurt. She’s also started bouncing on her knees if you hold her in your lap, and slightly head banging if you hold her on your shoulder. She really likes bouncing in general.

Vivian is still tolerating her glasses very well. I worry when we don’t have them on. The optometrist said she should wear them during every waking moment, but that’s not really feasible with a baby who has some sensory issues around her face. Still working on getting her completely comfortable in them while she’s laying on her back. I don’t know if we’ll ever get there!

And we need new batteries for her hearing aids. I must remember to call the hearing specialists and get some more. Doh!

We went for an hour-long walk yesterday, after having an awesome day with only two naps. Vivian was up for 5 hours after that! Didn’t get her down till almost 11pm. Then she woke up with a super sad this morning. We think it’s teething but really have no idea.

And I’ve also busted out all the clothes I bought for her at Christmas. She’s actually wearing clothes appropriate to her age, which is weird! When she was born, she went straight into 3 month clothing. Then she got away with wearing that through to about 7 months (stretchy stuff for the win!) and now the 9 month stuff is just a bit loose. She is growing like a weed now.

Those teeth I mentioned last week have been no shows! They lied. Little lying teeth. *shakes fist*

Hope your weeks are going OK (or weekends). Please leave us a comment and let us know what’s going on in your world.

Obligatory photo from our walk yesterday:

Happy Walk

171 Days

171 days.

That is how long it’s been since Vivian has had a cluster of spasms.

We had a neurologist appointment this week and he said we are seizure free. That the startles I’m seeing in the morning are probably just that, startles.

We got to ask all sorts of questions that we never thought to ask while Vivian was in NICU. Questions about her epilepsy before infantile spasms. About her vision.

It was a very uplifting appointment. For the first time in a long time, I can say we are seeing some light at the end of a tunnel, at least for now.

He suggested we look at weaning Vivian off of her current anti-seizure medication when she turns 1-year-old, as long as she’s still seizure free. The wean would take three months. His reasoning behind this is that her brain is developing so much right now, when she is young, so we should give her as much of a chance to be medication free as we can. Even if it means being off of the medication for only a year or two before she has more seizures, at least she will have that time to develop normally, without taking such a heavy medication.

Ben and I really didn’t expect that suggestion at all, because her pediatrician has said several times, “She’ll always be on a maintenance medication for her epilepsy”. I hope that he is right and that we can do the wean. I hope that the seizures don’t come back, ever. Or if they do, that they won’t come back for a long time, and that they are easily managed, without a drug that will make her space out and not be herself.

Every drug has its side effects and risks. There is no magic cure for epilepsy, unless you’re a candidate for brain surgery, and Vivian is not such a case.

We are so excited, and so hopeful.

Vivian Oball Smile

Vivian’s had a very good week this week. She has been sleeping in the cot again for most of her day naps, and has been going down for bed pretty predictably between 7-8:30pm every night. She hasn’t been sleeping through but except for one night where she had a very big sad, has been really easy to get back to sleep.

She is really starting to get used to her glasses, which is down to Ben’s perseverance. He does so much with her every day. He is amazing. I am so lucky that he is her Dad. I do wish I could be a stay at home mom, but Ben being home with her is the very best next to that.

We’re still on a solid food adventure at the moment. Yogurt is definitely a winner. Today, she tried some carrot & kumera (homemade) and that was another winner. She didn’t like it as much as the yogurt (I don’t blame her, the yogurt is pretty darn tasty), but she definitely didn’t hate it, so we will take that and run! We are so excited about this, too.

She doesn’t really get excited to see food coming (I don’t think she really notices either), but as soon as she touches it, she puts her hands to her mouth, and has let us spoon it in for her a few times. It’s amazing to see her starting to eat and take an interest in food, even if most of it ends up down her front. Ben and I really can’t get over it. She just keeps surprising us!

Tracy Runs For Vivian

Hope for HIE

I found a new group of parents last week, ones going through the same thing we are going through with Vivian.

Parents of other children who have hypoxic ischemic encephalopathy, or HIE. Vivian’s primary diagnoses is HIE. I haven’t really talked much about it here because we were so focused on treating her infantile spasms (IS), we haven’t had much time to actually look to see what support there is for parents of HIE kids.

The group I found is a support network called Hope for HIE and they have an awesome Facebook group that I am so glad I joined. They also have a long list of subgroups and other Facebook groups centered around HIE, like one specifically for parents who have a child with a new HIE diagnosis and another one just for Dads. It’s a very extensive network.

Hope for HIE

It’s really refreshing to be in a group with parents who have the same questions we do. Who have the same “what if” worries that we do. I wish that I had found them a lot sooner! There is a wide spectrum of severity with HIE, so obviously each child will have their own unique journey, but there are so many who are traveling down a path parallel to ours.

I want to help spread the word, so this post is more for search engines and parents who are Googling after receiving what could be the worst news they’ve ever gotten. New parents who planned their trip to Italy, but who ended up in Holland.

There is hope. It will be OK, even if right now you can’t see how it could ever possibly be OK. Don’t be afraid to reach out and ask for help.

Transitioning, Little by Little

I’ve written several times about how Vivian would only sleep in her hammock. It started because of her horrible reflux. When we were in hospital, Vivian would hardly sleep. She would scream and scream. Nurses would come from other NICU rooms to try to help soothe her, because being the biggest baby there meant that she was also the loudest. We found a Nature’s Sway hammock in the NICU hallway and have never looked back. Luckily we had already purchased one for home when I was pregnant, to put in the lounge. Little did we know it would be Vivian’s preferred place of slumber.

You may have noticed in the first picture of my last post, Vivian was asleep in her crib! This is not a fluke. Ben has been working very hard over the past two weeks and Vivian now has most of her day naps in the cot, with her Baby Shusher and Ben’s phone, which has a looping app playing me singing “Twinkle, twinkle, little star” over and over.

I know that sounds absolutely terrifying (it is; my singing is really bad), but for some reason Vivian likes white noise to get to sleep now. We are going with it. If anything, it’s helped the transition of sleeping while bouncing to sleeping while being still, because the constant that has remained is the white noise.

The important thing is that she’s actually sleeping outside of her hammock and his is a huge step for us.

We aren’t pushing it with Vivian’s night sleep, but we plan on trying it again soon.

Unfortunately she will still only eat while swaddled, either in the hammock or the crib (we have her on an incline in the crib). I did discover that she will sometimes eat randomly for me in other places – the car seat, while sitting back on my feather pillows, etc. Anything where she is in a semi-sitting position seems to be game, but only if she is hungry enough, and it is never a feed as good as it could be if she was in the hammock. With us being so concerned about her weight gain, we have again just gone with it.

Now that she is eating a lot better, we can start transitioning her eating habits to back in arms (hopefully) or at least out of the hammock and into a bean bag or sitting up in a more upright position.

The main reason we need to do this is because she’s not going to fit in the hammock much longer! She really is getting long. Our little girl is growing up.

From this:

Vivian 2 months old in her hammock

To this:

Vivian Made with Love

This picture is about two months old now, but it’s one of my favorite pictures of her at the moment. I love this smile.

But that’s not even the most exciting news that has happened this week!

Since we’ve had the corner seat for Vivian, and the table bit that goes with it, we have watched Vivian try to bring toys up to her mouth a bit more. We decided to try giving her some yogurt to see if she’d get any in her mouth, and boy did she ever!

She loved it. We are over the moon about this. Last time we tried feeding her some kumera (like sweet potato) and she didn’t like it very much. It’s one of those things the pediatrician said we should just wait a month and try again.

Check out this video!

Though she isn’t ready to grab food and turn her wrists to get it in her mouth with a proper pincer grasp, she is at least licking the yogurt off of her hands, which is awesome. She has never really noticed when we eat like other babies would, so she’s had no real interest in anything other than her bottle and even then she doesn’t acknowledge the bottle unless you brush her cheek or mouth with it. Now we know she will enjoy tasting some new things in the near future and maybe we can get her eating some high-healthy fat smoothies or similar, as a start on real food one day.

Baby steps! But so very exciting!

9 Months Old

Vivian was 9 months old yesterday.

Pretty soon our wee Vivian will be outside of me for as long as she was inside of me and I can’t get my head wrapped around that. I can still remember what it was like to be pregnant and so happy. I am happy most days now but about different things than I anticipated being happy about. Different achievements than those I thought I would be celebrating at this time.

It seems like so much has happened in the 2 weeks between blog posts, I don’t know where to begin! Apologies in advance for the novel!

When I last posted we were gearing up to go to her next pediatrician appointment. So those updates first: Vivian is now over 7kg at 7.33kg, which puts her at the 20th percentile for weight. For you Americans, that’s just over 16lbs. And she had gained another inch and a bit (around 3cm), which would be why everyone we see keeps telling us how ‘long’ she’s getting!

Vivian Sleepy Feet

The pediatrician wasn’t concerned about her weight, so we are to keep on with the breast milk for now and don’t have to worry about fortifying it. We have been very lucky to not have run out of donor milk. The right amounts keep coming in; small donations here and there have been keeping us going. Thank you to our wonderful, wonderful donors. You women are so amazing.

And the doctor doesn’t want to see us again for 3 months! That’s the biggest gap yet between appointments. Hurray! I told her to please not take any offense, but I was so overjoyed at that news.

The only thing of concern that she mentioned is Vivian’s head has still had minimal growth. I think she’s in the first percentile for head circumference now.

The pediatrician asked how Vivian’s ophthalmologist appointment went, which we thought went well. I’m concerned now that the tests that the doctor did didn’t really investigate whether Vivian has CVI.. The more I read about it, and the signs that kids who have it show, the more concerned I am that Vivian does have it. I have requested a follow-up sooner than 6 months away with the ophthalmologist because of this.

We picked up Vivian’s glasses last week and she absolutely hates them. With a passion. Every time we put them on she freaks out, because they’re on a band that goes around her head. First she freaks out because you’re touching the back of her head with the band, then she freaks out as soon as you slide them down on her face. Then she freaks out when she realizes things look different. There was a lot of freaking out and eyes squeezed shut over the past week. She would only tolerate them on for maybe 5 minutes at a time. At one point the little lenses were fogging up because her face was too warm and they’re so close to her eyes.

But today, she watched a Baby Einstein video (yes, we know screen time should be limited for babies. We used to just play it for her while she was in her bouncer because she liked the songs on it) and she watched pretty much the whole thing with her glasses on. And she didn’t mind when I readjusted them a few times, which was shocking. She also picked up a toy when her hand hit it and actually looked at it,ever so briefly, which is amazing.

Vivian Glasses Pondering

And Dad even got smiles out of her with them on.

Vivian Glasses Dad

Since I last posted, Vivian has also gotten her new hearing aid molds! They are ‘candy apple green’ and are so much bigger than her last pair; you can really see how much her ear canals grew during the holidays. They’ve also been turned up to 100% now, so Vivian has as close to normal hearing as we can get with them in.

Vivian Almost 9 Months

While we’re on the topic of hearing, one of Vivian’s favorite things to listen to at the moment is the Laura Veirs “Tumble Bee” album that an anonymous gifter sent us, along with an awesome Busy Bee bib with soft purple backing that Vivian loves. Ben and I really enjoy listening to this album as well and are often singing the songs to Vivian. She always smiles as soon as we start singing a familiar song, which is such a wonderful thing to see. Whoever you are, thank you very much! Vivian loves both items and so do we :)

On the therapy side of things: we were loaned the Lackey Squiggle Early Activity System to try out for a week to see if we wanted one ordered for Vivian. It is pretty awesome and we believe it will be really helpful for Vivian to learn how to bear weight on her hands, elbows, and knees; how to use her hands more; and how to sit up.

Vivian Squiggle Early Activity System

We were also given a ‘corner chair’ which we can strap Vivian into (loosely) which will help her learn how to sit up too. It’s a high-backed wooden chair with slight sides, and no legs. A table that goes with it was dropped off today and Vivian really took to banging on it with her hands and picking up toys to bang on the table, now that her toys are within easy reach.

We are still working on rolling front to back, and back to front to the left, since Vivian is stronger in her left side and doesn’t like to bear as much weight on the right arm. She has also started bearing weight on her feet if you stand her up, which is exciting. She loves to play a jumping game where we slowly make her jump up and down while singing, “Vivian is jumping, jumping, jumping! Vivian is jumping, just like that!” and she gets really excited. I’ll have to try to get it on video so you can hear her squealing with laughter.

I would say she might actually get to use a jolly jumper soon, if she keeps showing improvement there. I never thought she would ever be able to have fun in one of those.

As far as seizures go, we haven’t seen any spasms, and Vivian has only had a few suspicious movements that do seem like an exaggerated moro reflex startle. If I move very slowly during her first nappy change, they don’t happen at all, so they may not be related to infantile spasms at all. If this is the case, it’s been almost 6 months since her last cluster, which is fantastic!

It’s hard to believe in three months she’ll be a year old. It does go so fast.

Goodnight Eva

Gwen:

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.

Originally posted on The one in a million baby:

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…

View original 160 more words

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

A video posted 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!

IR4: When Running is More Than Just Exercise

Last weekend we signed up for this really, really awesome Facebook group, called I Run 4 Michael (IR4). It’s a group that pairs up runners and other athletes with kids and adults with physical or developmental difficulties that mean they may not be able to run. It started when the creator was talking about running, and a friend of his, who was battling bilateral hip dysplasia, said “you can run for me anytime!” A group was formed back in 2012, with 10 runners and 10 buddies with special needs. It now has over 30,000 members and over 11,000 matches.

I had originally read about it back when Vivian was first diagnosed with infantile spasms, but at the time we had far too much going on for me to commit to signing Vivian up.

Last week, I saw a post about IR4 again on The Mighty, and decided to finally sign up. I thought we might be on a waiting list for about 6 months or so, but by Friday Vivian was matched with a runner! Vivian’s runner lives 9,130 miles away from us here in New Zealand, and will be attempting to run that many miles for Vivian. She waited 6 months to be matched with Vivian, so there are way more runners wanting to be matched in the group.

It’s a pretty awesome thing knowing that someone across the world from us is running for Vivian and although it may not seem like something special, it really is. The posts in the Facebook group are so heartfelt and come from such a place of love and support. Our runner has been posting updates for Vivian on how far she’s run, and we post updates back for our runner about how Vivian’s day has gone.

I highly recommend signing your child up if you’re a parent of a special needs kid, or if you have any disability or special need yourself.

Every bit of support, whether practical or emotional, really does help in those dark moments, when you’re up worrying or trying to get your little one to sleep, or after a horrible day of battling with whatever problems you are facing. It is an awesome way to take stock of things and realize the progress Vivian has been making each day. I’m sure we will have weeks when our updates might not be as happy, but we will keep on keeping on, and our runner will be rooting for Vivian along the way. A small part of me feels guilty for not running myself, but one day I will get back into exercising!

And if you’re a runner, or someone who enjoys working out, please consider signing up! You might wait for a while to be matched but I can guarantee that it will be a rewarding wait. They also have a related group for siblings of kids with special needs (I Run 4 Siblings: The Unsung Heroes), where they can get matched with a runner, and a third group that matches runners with loved ones lost (Kerri On: I Run 4 Remembrance).

While I don’t know if Vivian will ever understand that someone is dedicating thousands of running miles for her from across the world, but I know Ben and I are so touched by it. We know that Vivian knows she is loved so much, even if she doesn’t know by how many.

We’re on a Roll!

Happy belated Valentine’s Day!

VivianValentinesDay

Look at those eyelashes.

It’s been a really busy two weeks.

We have started sessions back at the Champion Centre, and our ACC PT has still been coming over. This extra time with a PT has been awesome for Vivian. She has started rolling from front to back with little to no assistance!

 

We are so excited by her progress. It’s really amazing for us to see. The night after we realized she was ready to start rolling, Ben had popped her on her front in her cot for some tummy time and then when he went back in a few minutes later, she was on her back. I didn’t believe him at the time, so we tried to get her to do it again, but she refused. Typical Vivian!

She will also help you if you start to roll her from back to front, so much so that now she can slowly roll the entire length of her yoga mat (with help), without becoming scared.  Very exciting for us!

We are still working on Vivian’s rolling, putting weight on her arms and knees, and sitting up, along with her grasp. Our ACC PT is ordering Vivian a special piece of equipment to help her with all of these things. It’s a Squiggles Early Activity System, from Leckey. It looks pretty awesome, so I hope it doesn’t take forever to arrive.

We had Vivian’s ophthalmologist appointment on Wednesday to test her eyesight. They ended up needing to put some drops in her eyes to dilate her pupils, which she wasn’t extremely happy about, but it was worth the extra information that the doctor was able to get.

He thinks Vivian has close to normal sight and said that she is long-sighted at the moment. And she has one eye that is slightly crossed at times, due to her brain possibly having to switch between one eye and the other constantly. He also didn’t think she had any degree of cortical vision impairment at this stage, due to her intermittent tracking and focusing on objects. We have a prescription for her first pair of glasses and we are now waiting for the optometrist near us to order in some frames to fit her tiny head.

The ophthalmologist said that we might see a big change in the way Vivian interacts with toys and us once she has her glasses on. We are really very hopeful about this. I am afraid of being too hopeful.

Vivian was also fitted for more hearing aid ear molds on Friday (very busy week!) and so we will pick these up next week. We decided to step outside our color comfort zone and go for a bright green color (ooooh, styley)! Hopefully it doesn’t look like she has stuff growing out of her ears, lol. I’m afraid of getting red ones because I don’t want people to think her ears are bleeding. Weird thing to worry about, I know.

More smiles from Vivian:

New Therapy Team

Since our ACC claim was accepted, we now have another team of specialists to work with Vivian.

So in addition to the Champion Centre team, we now have another group of folks from Astech Assistive Therapy. We haven’t yet met with the Speech & Language Therapist yet, who will help with Vivian’s feeding, but the PT/OT person has come by twice so far.  The Champion Centre has been on break since right before Christmas, so it’s nice to get some therapy in while waiting to get back to our weekly appointments there.

Vivian really likes this new therapist, but I think most of all she likes being at home where she is comfortable. It makes me wonder if we should’ve chosen a home based service for her early intervention provider. But we do love the Champion Centre team a lot, and we are happy going each week now that we know what works for Vivian in the car.

I haven’t been home when these new sessions have taken place, since they’ve been on days when I work, but Ben gave me a full run down and the therapist sounds pretty awesome. She almost got Vivian to roll completely over from back to tummy the week before last (when I made the Facebook update about it). Very exciting! She is confident that Vivian will be able to roll both ways eventually, and was quick to point out that it’s not Vivian’s body stopping her from rolling. Vivian isn’t rolling yet because she doesn’t want to roll yet. She will roll from side to side and hang out there, but if you start to roll her over completely, she will stop you if she doesn’t feel like being rolled over.

Ben says that Vivian also was tracking objects visually really well for a brief period during the sessions, which is what made her almost roll over. It’s super puzzling because other times she really doesn’t register anything at all from what we can tell. It’s almost maybe a matter of her not being distracted by anything else? We still have so many  unknowns there.

The therapist also showed Ben a new exercise for Vivian’s wrists, to keep them from getting stiff from not being used, and is ordering us a piece of equipment to help Vivian learn to sit up while being supported in her core a bit better, as she is jut not strong enough to use the Bumbo seat we have for her.

Vivi First Pram Walk

Other updates:

On the feeding front, it’s still an uphill battle. She will not eat for me in my arms, and might take about 20ml for Ben in his arms. She will wait till she’s swaddled and in the hammock before eating. And her intake has been down this week, so of course I am worrying about that.

She had an OK week overall, but has been pretty unsettled today and I don’t think she is feeling at all well. Lots of naps and fussing, although today her eating was better today than any other days this week.

We are giving her lactulose daily again after she started struggling a bit with her poo. Poop to that! She is taking most of her medications a lot easier than she used to though, so at least we have that going for us.

Next week we are back to being busy with appointments and therapy sessions. I’ve started using Google Calendar for all of our appointments so Ben and I can know at a glance what is coming up and what days are free for new appointments. Crazy busy, baby!

What’s new in your world this week?

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