11 Months Old

Ack, two more weeks have gone by. Vivian is now 11 months old! We have been floating through with no major upsets. Still no spasms. Less than a month to go till her birthday, and inside I’m silently freaking out about it. It has been the longest year of my life, and the shortest. I am dreading it because it is bringing up all sorts of memories of her first month in hospital. But I also want to celebrate it.

The Christchurch Women’s Hospital finally sent us their serious incident report of the events that took place when Vivian was born, and recommendations that have been made based on that report. I’ve only read it once and it was not fun to read. I should probably reread it but I don’t have the energy.

They believe  that Vivian would have suffered from some degree of HIE (lack of oxygen) already when she was born, but that their mistakes during her birth contributed to her injury being much more severe than it would have been had they made no mistakes. I am calling bullshit on that, because who wants to accept responsibility for giving an infant severe brain damage, but we will never truly know.

On to Vivian updates:

Vivian still has two top teeth coming in, and they’re taking their sweet time making a début. I can’t figure out if they’re her incisors or not, but they’re not the front two teeth. Yay for still no sleep! But we’re all handling it pretty well considering.

Vivian First Sugar Taste

Still experimenting with solids. Savory stuff is not passing go and not collecting $200. It’s heading straight to jail, via dripping off Vivan’s tongue or being scraped off because she would rather eat sweets, like yogurt, or butterceam icing (we’re doing a photo project and wouldn’t normally feed her that, I promise). We didn’t think this introducing new flavors thing through very well, did we? Take it from us, hold back on the sweet stuff!

Vivian is eating out of the hammock now, and having all her day sleeps in the cot. Awesome progress there. Just need to build up our resolve to get her night sleeps going in the cot. I have no idea how to do this. We do not believe in the cry-it-out (CIO) methods, so I think it will take some time.

Blind & Low vision Education Network NZ came out to meet us last week. They will be returning a few more times to fully assess Vivian’s sight to see if she’ll fall under the criteria to be accepted into their program/membership/not sure what they call it.

The two ladies who came out were really lovely and saddened as much as we were about nobody mentioning their organization to us from the hospital or eye department. Apparently they have approached the hospital several times and tried to educate them on what their criteria are and have asked them to send cases their way if patients meet the criteria, so they can be assessed early. Big thank you to Stacey (Thomas’s mum from Minding Thomas) for sharing information about CVI and BLENNZ. Without her blog I never would have researched it myself.

Aviator Vivian

We have an audiology appointment this week, to get new molds fitted for Vivian’s hearing aids, and to continue familiarizing Vivian with the audio-visually determined reaction evaluation test I mentioned a few posts ago (where they play a noise and if she turns to find the sound, she sees a puppet move).

We had a visit from Vivian’s ACC-provided speech language therapist. She is stoked with Vivian’s progress on not eating in the hammock. We have her propped up on pillows on the floor to eat at the moment, and she suggested continuing to add pillow height until Vivian is sitting up more. Sometimes I sneakily feed her while she’s leaning on my legs, sitting up. She won’t let me do it every time, but some is better than none.

We’re to also continue with “turn taking” behavior – where we do things Vivian likes and then stop to see if she’ll tell us to continue, and then we’re supposed to state what we are doing, and what Vivian is doing, so she gets used to hearing the words more. And to also encourage her to differentiate her vowel sounds when she’s babbling. We haven’t really heard her do that at all. I’m not sure if that will come. I hope it does.

And we’re also supposed to read her books, which is something we haven’t really done before, because we are so busy trying to do Vivian’s physical therapy every day and getting her feeding and sleeping sorted. The SLT was very adamant that books are meant to be fun. And they will show Vivian things that she wouldn’t otherwise see in our house (but we’re not sure what she can really see at the moment, so it was hard not to point that out).

So I will be hitting up thrift stores and kids buy-sell Facebook groups for some more books. Pretty books and old books, books that can be slobbered on and books to keep. Because anything is worth a try, if it helps even a bit with her communication, or if it brings a smile to her face. Whether it’s because she likes to hear us read her stories or if she just likes touching the books and playing with the textures of the pages, I’ll do my best to give her that opportunity.

Mom Cuddles

Hugs from us to you. <3

When the Days are a Blur

This happened:

200 Days Seizure-FreeWoo hoo!

The rest of the days are a bit of a blur, as Vivian has been up most nights with stomach pain, from what we can tell. I think it’s related to starting solids. And when she wasn’t up with stomach pain, she’s wanted to have a party at 3am for an hour or so.

I made up a batch of pears purée, not realizing exactly how fibrous pears were for little baby tummies. Although she enjoyed it a lot(but the texture freaked her out a bit),  we had a bit of a double whammy with carrot and pear in one sitting, which caused her to have a sore bum. I think it’s going to take a bit of time for her to adjust to eating solids, but since she’s our first kiddo, we don’t really know what’s normal and what isn’t.

Ben and I are both so excited by Vivian’s interest in solids, though. We just can’t get over it. I had a teary-eyed moment at work when Ben sent me this image of all the food she ate in one sitting, without getting much on her bib. It was a very special moment that I don’t think I’ll forget any time soon. I am so mushy even looking at it again now.

Solids

Vivian’s milk intake has still been on the low side, and she had a temperature for a day or two this week. I think if she was coming down with something she would’ve displayed more symptoms by now, but she’s just been super fussy overall during the day, too. I don’t know if this is the start of teething? Something else? Whatever it is, it’s not been fun!

Vivian has been extremely fussy during her physical therapy sessions as well, which isn’t like her. I’m not sure if it’s tiredness due to crappy timing or again, if she’s just not feeling well.

We have ordered a custom wrist brace for her right wrist, because she tends to hold at an unnatural angle. Hopefully it helps. If she does it because of high muscle tone, it might actually be bad to use, because then her muscles will strengthen by pushing against the brace. It’s all very up in the air. We do try to correct her wrist position, but it’s hard to do it all the time. You can see it in the image below; it usually happens when she’s sitting and wanting to interact with toys.

Eating Mr. Snail

Update on the missing ophthalmologist notes: the eye doctor gave us a last-minute appointment last Tuesday to clear things up. He thinks he must have seen another two babies with some severe eyesight issues, and may have superimposed one of their cases onto his recollection of Vivian’s case when he wrote that latest letter to me. Her original prescription is correct, and yes, she should wear her glasses as much as possible. They are definitely making a difference in her strabismus and her vision. Glad that’s been cleared up!

He still thinks it’s too early to test for corticol vision impariment, and said that the test would do one of two things. Either give us a really good reading and show that Vivian’s eyesight is working normally (as in sending signals in a timely manner to her brain), or give us a crappy reading, which could just mean that Vivian isn’t paying attention during the test, or that Vivian’s vision isn’t working properly. He said the second instance wouldn’t give us great information to go on.

I am still wanting to know what BLENNZ will say though, so we’re proceeding with the assessment in early May with them.

Until next time, big hugs from us to you!

Baby food, Bath-time & Babbling

Ok, time for Vivian updates. The weeks keep going by so quickly, it’s hard to recap!

We’ve been on a bit of a high after our neurology assessment the week before last. Getting that news that we could look at weaning her off of her maintenance med if the spasms stay away was really exciting.

Overall the past two weeks have been pretty easy-going. Ben is finally over whatever virus he had and Vivian and I didn’t get it (phew)! We got into a bit of a sleeping routine where Viv would be asleep pretty early at night (but still waking to have milk and go back to sleep). Then she got some really bad stomach upset over Easter weekend. She was up every night for an hour or two in a lot of discomfort. I think it was me not getting a good balance of hindmilk and foremilk in her bottles. She is past it now but it was really poopy to see her so unhappy.

For physical therapy, we are still working on rolling and putting weight on her arms, as well as sitting up and grasping objects for longer than a few seconds. She’s started grabbing her left toes easily with her left hand and will cross grab to her right foot now too. She still doesn’t really do much with her right hand, though. I’m worried about her right wrist constantly turning at an awkward angle. Ben’s going to ask our PT about that this week to see if there’s anything more that we can do. Maybe a brace? I don’t know.

Her glasses really do seem to be helping, as well as her hearing aids, although she’s becoming really good at getting one or both of her hearing aids out now. This usually happens when she’s laying down and can rub her face on something or rub her ear against her shoulder easily.

We’ve also been back to the hearing specialists, who have begun preparing Vivian for reaction hearing testing. I’m not sure how well it will go, but it will be interesting to see. Basically whenever Vivian hears a sound and turns toward the sound, she is rewarded with a puppet show.

It took her a couple of tries, but she got there in the end. She would mostly “still” when the loud sound played, instead of turn towards it, which is still a positive sign. We didn’t think to bring her glasses to the appointment (doh!) and so it was probably hard for her to really see the puppet, and honestly, the office is pretty distracting for her visually, so I’m not surprised by this. We’re due back in another month for some more testing.

Food-wise, Vivian’s intake has been a bit all over the place over the past two weeks. It’s not been as good as it was last month, with her volumes ranging from 500-700ml. Not sure what is going on there, but we’re working on it (as always).

We’re still experimenting with solids, and yogurt is still Vivian’s favorite food, after her milk of course. Carrot & kumera were probably the next favorite, but only the homemade version. The store-bought Wattie’s organic stuff didn’t go down awesomely. Pear got the nod. We tried a bit of bread today, with her yogurt. It got really mushy, really fast. Maybe a bit the size of a pea made it into the back of her mouth.

Yummy

Purées have definitely been the way to go! I made up a batch of carrot purée today and put some coconut cream and breast milk and a knob of butter into it for some extra calories. Hopefully Vivian won’t have any reactions to the butter.

We did offer her the spoon today and she actually tried to get it to her mouth, which we were not expecting. This was during yogurt-eating though, which is the only food she’ll actually open up and attempt to bite the spoon for. Yogurt is tasty!

Spoon

We are looking at getting her a high chair this week. I think I’ve found a model that will have a high enough back and some shoulder straps to help support her like her therapy chair does. It’s getting hard to feed her on the floor!

One other awesome thing that’s happened is Vivian has finally discovered that bath-time is fun. Before now, baths could really go either way; she would either tolerate them with mild curiosity, while staying incredibly still in the water, or she’d have a meltdown of epic proportions.

Water is for kicking, she says! And kicking she does, very well indeed! So well that she can get Ben’s face wet while he’s standing in the doorway of the bathroom (6 feet up in the air). I’ve found the safest place is down low next to her; no splashes there :)

And lastly, Vivian’s babbling has come back in full force. I think maybe while she was working very hard on getting some rolling down, her babbling took a back seat. I was starting to get worried. We are still being referred to a speech-language therapist to start speech therapy soon (we see one at the Champion Centre and one from ACC, but neither have approached us about Vivian’s lack of speech yet). I am happy that she is starting to produce new sounds now – some L sounds and some M sounds. Experimenting with her tongue more, etc. And blowing TONS of raspberries! So. Much. Spit.

Big hugs from us to you. Slobbery kisses from Vivian. She loves to tongue my cheeks at the moment, but not Ben’s. They must be too hairy?

Missing Ophthalmologist Notes

Skip this post if you want updates on Vivian – this is more about the New Zealand medical system and how frustrating it is at times. I will be writing a Vivian update post tomorrow, I promise!

I have started the referral process for Vivian to be assessed by the Blind and Low Vision Education Network New Zealand (BLENNZ) for corticol vision impairment. I had no idea I could start this process myself and was waiting for the ophthalmologist to test Vivian for this but he didn’t. I would rather try and get a diagnosis early on so we can get some vision therapy in place sooner rather than later but he and our neurologist seem to think it’s far too early to test for this, although they have both said repeatedly that she will undoubtedly have some degree of it.

Before I realized I could self-refer Vivian, I’ve had to call the hospital’s eye specialist clinic at least a half a dozen times to get the notes/records sent to me from the appointment we had in February. They initially sent me a letter that they also sent to Vivian’s pediatrician, but I wanted another copy of her prescription for corrective lenses and any notes he took on the tests he preformed, so I could forward them on to BLENNZ with the referral form.

After a few more increasingly frustrating phone calls wanting to speak to the opthalmologist to ask why he didn’t test for CVI, I received a phone call from the opthalmologist that I sadly missed, stating that he would move up our follow-up appointment (originally set for 6 months away) and that he didn’t feel the need to test her eyes for CVI until she was 18 months old.

Well, the eye department couldn’t even produce this. They referred me on to patient information and said I would need to request the records from there (with a release form). I did this and they sent me the same letter I had already been sent… This lead to more emails between myself and patient information, who were waiting on the eye department to find the notes, because apparently I should have called the eye department for these. Hello? I did. Numerous times! They told me to call patient information!

Finally we end up with a new letter from the opthalmologist, addressed to me on 1 April…stating that there seems to be some question of whether Vivian actually needs corrective lenses (there is no question about this in my mind? I never ever insinuated that there was) and whether the corrective lenses would help with her strabismus. He then wrote that her prescription was +1.50 in each eye, which is very ‘weak’, and said that the lenses wouldn’t make a difference in the strabismus, so she didn’t need to wear them all the time if they were causing her any sensory issues.

Honestly, I think he wrote this off the top of his head, to cover his ass, and that he probably didn’t even take proper notes at our appointment. I got the optometrist to send over a copy of the prescription we’d brought in. He originally gave Vivian a prescription for +3.50 in each eye, a much stronger prescription than he is stating in the letter. The optometrist who fitted her glasses said she should wear her glasses “every waking moment”. What in the honest fudge – are we even talking about the same baby? I called the eye department again and informed them of my serious concerns about this incorrect information. Of course the opthalmologist is now on holiday until next week so we will not know if Vivian even has the correct prescription until he gets back. I’m assuming she does have the correct prescription and he was relying on memory to write this letter, as the eye department cannot find any further notes from the appointment.

Baffling. And ridiculous. And a complete waste of my time and their time. The good news is the BLENNZ Christchurch folks have contacted me and they’re coming to assess Vivian in May.

I honestly don’t know how parents are meant to navigate this system without giving up out of sheer frustration. If I wasn’t so persistent I really feel like not a lot would be done for Vivian. Super frustrating, and super tiring. It should not be this difficult.

Epilepsy Means to Me

Gwen:

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.

Originally posted on 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…

View original 628 more words

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.

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