Happy 2nd Birthday, Vivian!

It’s official. We’re into terrible-twos territory. Vivian turned 2-years-old just over a week ago. We all had a cold that week, so we postponed cake until yesterday.

2nd Birthday Smile

The cake itself was enjoyed by all. We ordered a cake from Cakes by Anna, who makes amazing cakes here in Christchurch. The got a lovely small lemon, lime and raspberry one full of tangy, tart flavors that Vivian likes in the hopes that she’d actually want to eat some. It usually has gin in the icing but that was swapped out for raspberries and it usually comes with heaps of toasted coconut on top, but that texture would’ve been vetoed by the birthday girl. It was delicious.

Vivian actually took a few swipes at the icing this time and then promptly dropped raspberries all over the place.

Touching The Cake

She especially enjoyed being sung to, as long as it was in an octave higher than anyone would normally use ;)

#happy belated birthday to our beautiful munchkin @elemunknz #hopeforvivian

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It was pretty adorable and fun for the few minutes it lasted. She quickly exclaimed that she’d had enough of this cake thing and wanted back down to roll around on the floor.

Tasting Icing

Her actual birthday was hard to swallow for me; I actually forgot it was her birthday until I got to work, and then I felt guilty for not remembering until then. Mom of the year! Then I wished I had better memories of the day itself…and for the first few minutes I was home that evening, it was hard to think about while looking at her. Hard to wonder if we could have changed anything on the night she was born, so that the difficulties she has faced didn’t have to happen. The what ifs, the should haves, they shouldn’t matter anymore.

They’ve still crept in, unwanted, usually as I’m trying to drift off to sleep. They have still been my faithful companions for 2 years, during quiet moments in the car. While Vivian has cried and kicked through the night, after all our singing and bouncing and rocking has failed her. When I’ve seen how tired Ben is and when I’ve seen the worry flicker across his face. When I’ve looked at other kids her age and wondered if she would do the things they do, if she could. If her injury hadn’t happened.

And then I looked at her again, and she smiled as I said hello and she said hello in her Vivian way. And the what ifs all melted away. She giggled and it was OK again.

Birthday Cake

I asked Ben how he was feeling after Vivian finished giggling, and he just said he was tired. He didn’t realize I meant how he was feeling in the big scheme of things. It creeps up on him in different ways than it does me. The other day he told me he noticed Vivian seemed to get really frustrated that she couldn’t move in the direction she wanted to go in and she looked around and started to cry. It made him sad to think that she could be getting more and more frustrated each day when she wants to do things but her body doesn’t listen fast enough. It made me sad to know he was sad.

But we continue to push on. And she is amazing, regardless of how we thought things would happen when she was born. We don’t allow ourselves to stay in sad what if land for very long because it doesn’t help anything. And honestly, nobody’s got time for that!

2nd birthday #hopeforvivian

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Vivian’s been living up to the terrible-two stereotype. It’s mostly sleeping issues still. Some nights it’s normal toddler waking, but most of the time it’s discomfort. Kicking and crying, arching and bucking. It’s not fun for anyone, especially Vivian. There could be some teething mixed in — two-year molars? — but we can’t know for sure.

We do know her motility seems normal at the moment, and she’s not refluxy, so we’re stumped. We hope it passes soon.

She threw a tantrum last night when I was trying to put her shoes on, so I could get her into the standing frame. She wanted to be on her stomach and I kept rolling her over to her back. You would think the world had ended! I didn’t blame her. Who wants to be torn away from the amazing sliding panel on the entertainment unit? How could being stuck in a standing frame ever compare to the wonderful ‘THWACK!’ the panel makes when you roll it hard enough to hit the other side and bounce back to the middle?

She’s definitely developing her ability to say no, in her own Vivian ways. And also to say yes. It’s amazing to see how much she truly gets, that I didn’t realize she was getting.

I don’t even know where to start on updates.

Sleeping:

More of the above. Ben and I still attempting to do the shift sleeping to cover wake ups, although I am now working full-time so it’s harder to make sure we’re all getting good sleep. I feel incredibly guilty that Ben wants me to get the most sleep, because he thinks he can catch up on sleep when she naps; some days she doesn’t want to nap so he gets shafted. I think we manage to go to sleep at the same time maybe once a week, if that.

Vivian is understandably fussy on days where she has had shit sleep overnight. It doesn’t help her therapy or learning if she’s exhausted.

Currently waiting to meet with ACC to discuss sleep study options. May end up finally going to Auckland to the Wilson Centre in the Spring.

Physical therapy: She’s making amazing progress with standing for longer and longer periods. We removed her knee guards from her standing frame probably 8-10 weeks ago? and it was very hard work for her to stand without them supporting her knees. You would have to keep a super close eye to make sure she wasn’t faltering and slouching in her frame. Now she will happily stand for 30-40 minutes and watch a Baby Einstein show, alternating her weight back and forth from left to right legs and playing with throwing her weight backwards and forward in the frame. I am sure she’s not supposed to do that, but I don’t see how we can really stop her. Some days this is easier than others, but I guess that’s life.

Leaning

After she spends that time in her standing frame, she’s starting to do some freestanding with just your hands on her hips for support. Then she gets tired of this after a few minutes and wants to lean on the entertainment unit. I’m well aware no child should watch TV that close. It’s only for a minute or two each day,  so hold your horses.

I wish we had a therapeutic bench for her that was a better height, as the unit is actually too short for her and she has to lean down/bend at the waist more than I’d like her to. It’s still amazing she even wants to do that after standing for so long. She is getting so much stronger now.

We’re still working on sitting independently for longer periods of time. It’s all about balance and really, Vivian’s want to do it. She will often lean back to rest on you simply because she can. She’s stubborn, what can I say?

Almost starting to sit up by herself #hopeforvivian #hie

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She’ll now prop up on her hands and knees for longer and longer periods, which only really began over the past 2-3 weeks. Before, we would get lots of angry yelling while she worked on this, because it was such hard work, and now that only really happens when she’s tired and over it. She is really sitting up quite tall, and Ben and I both saw her push up from hands and knees to just her knees for a few seconds the other day. Her PT is sure she’ll end up pushing herself over backwards from this position before she ever goes forward, but that’s how she’ll learn.

Occupational therapy (OT) Vivian’s working on accepting new textures and toys. We’re introducing new toys slowly by placing them next to her favorite toys. Not forcing her to look directly at them, but just introducing them on the peripheral in the hopes that Vivian will show interest in them. She usually just tosses them to the side to get to her favorite toy, Sammy the snail. Oddly enough, some toys she used to like have now started freaking her out, especially if they make noise. We’re not sure why exactly; perhaps she dropped one on her face while it was making noise and it frightened her?

Speech-language therapy (SLT), we are still working on Vivian using switches to make choices. Last week the SLT suggested we also use sign language when we say yes, no, more, and finished. Personally I think the hand movement between yes and no is too similar and I think it might be too small of a difference for her to pick up, because it’s hard to get her to look at your hands.

I also don’t know that she has the fine motor skills to control her hands in that manner to replicate the movement, but I guess it’s more about receptive than communicative language. I am a firm believer that she understands what we’re saying verbally anyway, due to the words she is starting to show recognition for – bottle, tickle (she’s started tickling her right arm with her left hand if you say tickle, to show she wants her arms gently stroked), brushing, finished, show on (God forbid the show ends. The world ends if the show ends!), etc.

Also still working on the book reading with switches, although it’s further down on the priority list (there’s only so much you can do in one day when you have so many things to work on!). Some days she likes it, others she hates it. Flip a coin!

Equipment updates:

Vivian probably only has an inch left in her current standing frame. I think we’re due to look at new ones very soon.

We’re currently trialing an adaptive stroller system called a Bingo Evolution. It’s pretty flash. It should last Vivian for at least 3-4 years and hopefully take all the wear and tear that goes along with it. I think it will be the one we end up going with, but there is still one more we are looking to trial at the end of the month that seems comparable.

The only thing that I’m concerned about is getting her a winter bag/foot muff thing to go over her legs when she’s in the chair, as unlike a regular pram/stroller, Vivian’s legs aren’t backed by any solid fabric in this chair. The bag part that goes with the chair is $500 to buy separately and the ACC equipment specialist said that it’s our responsibility to keep Vivian warm and dry, so ACC would not fund it.

I find this a bit ridiculous, because if Vivian did not have an ACC claim, we would not need a special chair to get her out and about, she would be in a normal pram, that would come with a normal winter bag to keep her warm and dry…so they should fund it. We’ll see what happens. I haven’t talked to our case manager about this yet. It feels petty to dig my heels in over this in the big scheme of things, but that’s $500 we could spend on clothes, food, and diapers for Vivian.

I’m also concerned about the orthopedic inserts we got for her Piedro boots. They look like they’re a bit too high in the arch area, and that they’re causing Vivian’s feet to point slightly outwards inside the boots, even if the boots are straight on. Ben said both PTs saw them and said they were fine, but it seems to me like the boots were ordered too large, with the hope that they would last Vivian longer (and therefore be cheaper for ACC), but maybe it’s me over thinking things. I might get her back into Orthoptics just to have a look at the positioning of her ankles, because the ortho lady who looked at her hips a few months ago did say to watch her ankles and if at any point it looked like she was putting weight down through her inner ankles to the inner arch of her foot, she would need to get ankle-foot orthotic braces (AFOs).

We got Vivian’s Upsee from Firefly by Leckey. It’s pretty awesome.

New #upsee fitted today! #hopeforvivian

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We’ve only used it couple of times, but should increase that on the evenings and weekends soon. It’s a two person job to get Vivian and Ben suited up, so Ben can’t really get her in it when I’m not home. Vivian has started to do some early walking with Ben while freestanding, where he moves her legs forward with his feet by shuffling very slowly, but so far isn’t moving her legs forward by herself. I hope that she shows the want to move on her own soon, in order to get to things she wants. She hasn’t really shown that real want to get from point A to B on her own as much as her PT would like, so she hasn’t looked into ordering her a gait trainer yet (walking aid that sort of looks like a backwards walker).

Eating and drinking: Vivian is really getting the hang of guiding the spoon to her mouth. Still not keen to pull the spoon out with her hand though, so she drops the spoon, lets it hang, or pushes it out with her tongue. Or, if you’re not fast enough, she quickly drops the spoon and moves her head away to get it out of her mouth while you’re holding the spoon.

Her SLT suggested we let her bring the spoon to her mouth and while we gently keep a hold of the end, quickly use one finger to keep the spoon in her hand (easier to show than explain through text), but Vivian is far too clever and quick for that mess, which is why she’s gotten faster and faster at taking her hand off the spoon once it hits her mouth. She has started to also want to put it into the side of her mouth, rather than the center, and wants to chew on the spoon, so I think we’re due for some molars soon.

Learning how to use a spoon #hie #hopeforvivian

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Vivian still doesn’t want to touch the food with her hands much. She refuses to try things if you are holding them with your fingers rather than a spoon, unless you make a huge song and dance out of booping her tongue until she tastes it. She’ll push your hand away over and over and get upset until you stop, unless you can get her to see it tastes good. This means any sort of dry solids are a no go, unless you work very, very, very hard and you are very, very, very patient, and you have an hour to spend on feeding for one meal. It is frustrating, for both parties.

She will accept almost anything on a spoon though. Even if it’s something she just refused that you were holding to her mouth. Spoon = safe. Hands = medicine? She wasn’t always this adamant about it. I am wondering if it’s a vision issue, because she is no longer wearing glasses. It doesn’t mean she can actually see perfectly, and she was far-sighted, so things up close may be blurry?

Drinking:  she is now on formula, as we didn’t want to source donor milk any longer. We figured there were younger babies who needed it and Vivian started to accept formula. So now she still gets as many bottles as she’d like of half-strength formula. Hoping to swap her to water soon, but that will be slow going.

She started showing a lot more awareness of where her tongue was and started making little sucking noises so we have begun feeding her some fruit puree from a pouch with a straw on it to hopefully start transitioning her to sucking on a cup with a straw soon. The SLT has ordered us a drinking set that has a squeezy bottle and straw with a one way valve on it, so you can squeeze the bottle to get liquid up the straw and it stays there until it’s sucked out, so Vivian won’t have to work so hard to get liquid all the way to the top of the straw. Fingers crossed it works.

Learning to suck part 2 #hie #hopeforvivian

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No more tantrums after meals when we put our hands up to say finished. But much ignoring until there’s no way to ignore than the food is gone. We quickly move on to brushing teeth and she is getting better and better with that, even starting to hold the brush if it has an Eazy-hold strap on it.

#finished but she doesn't want to be done so she's ignoring me #hopeforvivian

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Eyes: We were back at the ophthalmologist’s office last week. He thinks Vivian’s sight is OK, and that glasses aren’t going to make a huge difference (because she wasn’t tolerating them). He does not want to do surgery to correct her inward-turning eye because he thinks it may not cause that much of a difference to her development, saying that her vision is not a high priority to the rest of her development. I have heard the opposite from parents of other kids with HIE, where their child’s development has really taken off after having the surgery.

Then, in the same breath he says that the younger the patient is when they have the surgery, the better the chance of them gaining good control over their binocular vision. Most doctors perform that surgery when the child is between 1-2 years of age. I feel like that’s a cop-out, and I think that we should have it if it can help her in any way, especially if it will make it easier for her to see. er brain would no longer have to swap between eyes, which is very tiring.

It’s almost like saying because she has global developmental delays, we should concentrate on other areas than her vision because they’re more important, because she obviously has some level of vision already. If your child has had a strabismus surgery, can you please share your thoughts in the comments or email me? 

Ears/hearing: Vivian seems to be hearing fairly well when she doesn’t have her hearing aids in. So much so that the audiologist believes her hearing has improved somewhat. Unfortunately the test to determine this can’t be done while Vivian is awake so we won’t know unless she has to be put under for whatever reason in the future, but it’s something we’ll look at if Vivian ever needs surgery.

In the meantime, Vivian still wears her hearing aids for a good portion of the day, working up to full-time.

Hips & tone: Vivian is now overdue for her second round of hip x-rays…surprise surprise! And also overdue for a follow-up pediatrician/specialist appointment.

The ortho lady who arranged her first x-rays should arrange another set soon. She checked Vivian out this past week while at the Champion Centre and says she thinks her hips are fine. Increased overall tone on her right side (meaning her right side is held tighter than her left) but nothing new to worry about. If Vivian’s tone on her right side gets worse, we may have to look at botox injections when she gets older. I am hoping more standing time will help stretch out that right hamstring.

Teeth: Vivian is now seeing the hospital pediatric dentist, instead of a private dentist. He wants her back in a few weeks to monitor her molars for any signs of decay. He mentioned that kids with HIE injuries are prone to having moderate to severe enamel defects on their molars, so he wants to keep a close eye on her second set when they come in because it makes them prone to decaying. He wants us to brush after breakfast and dinner, and apply dental mousse at night while she’s asleep.

He also told us to wean her off of her bottle at night. On top us already not getting great stretches of sleep, now we meant to cut off her bottle…one of the only things that can get her back to sleep when she wakes up. I understand that milk sitting on teeth is not good, but some kids just get the shit hand when it comes to genetics and circumstances. If Vivian is one of those kids, I don’t think a bottle at night it going to change that much. If I was breastfeeding he’d have said the same thing. There are only so many battles we can fight and still be sane during the day.

I think that’s everything I can think of at the moment! Thank you for reading along and supporting us over the past 2 years. I looked back at my Facebook posts (they’ve been popping up in the “On this Day” section) and there are so many comments I didn’t get to reply to, and messages of support from so many of you. We couldn’t have made it this far without the village that is you.

Much love and drooly kisses from Vivian to you. And a cheeky grin. :)

2nd Birthday Smile 2

Weight Woes & Ear Checks

It’s been a month since I last posted updates – oops!

Good news first: Vivian is still seizure free and we are a month into weaning Vivian off of her anticonvulsant medication (a quiet woo hoo!).

Bad news: It’s been this long between posts because we had a setback with Vivian’s weight and it has been hard for me to come to grips with it, and because Vivian’s birthday kept us really busy (will update about that soon, I promise).

The day after my last post, we had Vivian’s next pediatrician appointment at the hospital, where she was weighed for the first time in three months.

We were pretty shocked when the scales read 7.65kg, meaning Vivian had only gained about 320g in three months. It was super disheartening when the pediatrician pointed out that this put her at the first percentile on the hospital growth chart (based on forumla-fed infants). She did grow 8cm over those three months, though, so her growth hasn’t been stunted at all.

Ben and I left that appointment full of gusto about getting Vivian onto three meals of solids a day, and me vowing to research everything I could about getting more calories into these limited (smoothest of smooth) solids.

The pediatrician also put in a referral to get a dietitian working with us. I will admit that it was really hard going home and realizing that yet another thing with Vivian is not going to be easy. Really hard. But she’s still smiling, and laughing, and being as active as ever, so she’s definitely not failing to thrive. On the bad days, she makes us really work for those smiles and laughs, but it’s still worth it.

I was also pretty confused because the New Zealand Well Child books use a different growth chart than New Zealand hospitals use. The well child chart is based on breast-fed infants and is the one used by the World Health Organization. On that chart, Vivian’s weight put her at the tenth percentile, not the first.

Vivian was weighed again last Monday and now weighs 8kg (I think this puts her at the 25th percentile on the WHO chart) after a lot of hard work by Ben and Vivian. Ben has been working on upping the volume of solids at every meal, along with adding things like cream and butter to Vivian’s solids, which she doesn’t seem to mind. We’ve also discovered Vivian takes after me and shares my love of peanut butter. Her only accepted savory flavor to date. We’ve got a long road a head of us on food! Hopefully we will get there one day.

The dietitian finally made contact and saw us last week and didn’t really tell us anything we hadn’t read already while researching a higher calorie diet for Vivian. She did, however, point out that breast milk wasn’t providing Vivian with an adequate amount of iron past the first 6 months. When I mentioned that this information was somewhat outdated, and that the iron in breast milk is more readily absorbed than iron found in other foods, she didn’t look particularly pleased with me and so I spent the rest of the meeting on edge, and was pretty disappointed with the information she provided.

At the moment we are still continuing with donor milk, as we haven’t run out yet. She did mention a supplement we could add to Vivian’s breast milk that will boost the fat and calorie content and dropped off a sample for us, which is a good avenue to look at, but a large amount of powder will need to be added to the bottles and we’re not sure Vivian would readily accept the flavor. Something for us to trial, I guess.

Slight rant: Today we were back at the hospital for an ENT appointment that was completely superfluous and a waste of time. We were there for all of 90 seconds once we were called back from the waiting room. They only wanted to check Vivian’s ears to make sure there was no fluid build up or sign of infection, even though we already see the hearing specialists at least once a month (usually twice a month)!

While I do appreciate that they have Vivian’s best interests at heart and that they’re being vigilant with her hearing health, we could have told them her ears are clear because they were just looked at 10 days ago.

I leave you with what Vivian thought of the waiting room:

What Vivian thinks of having to wait for her appointment #hopeforvivian

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And will try to update with how Vivian is getting on in physiotherapy and her birthday soon!

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

Starting Over

We are back to day one, after making it to 5 weeks and 2 days of no seizures. Vivian had some on Thursday morning.  It was a very sad morning for Ben and me. Heartbreaking.

We started weaning her off the prednisolone over the past few weeks. This week, she is down to 2ml a day.

Our neurologist is on holiday  until Monday. The other neurologist, who treated Vivian when she was very young, said to watch her over the next few days before upping the steroids back up to 4ml. We haven’t seen any more seizures since Thursday morning, but now we are back to watching her like hawks, evaluating every movement and cry. We will be calling our neurologist on Monday to see what he says as well. I don’t know what this means for her, or what it means for her treatment.

A lot has happened over the past two weeks, other than seizures.

I’ve gone back to work almost full time. I almost had a panic attack two days in, when our property manager called me and told me we had 6 weeks to find a new place to live. The owner of our house needs to move back in, because he can’t find a place to stay while EQC comes to fix his house…

The only other time I’ve sobbed like that is when we got Vivian’s MRI results. I really at that point didn’t feel like I could do anything. It was just another thing that was happening to us. And it sucks, it really does. It seems like one thing after another keeps happening and we can’t catch a break!

It is really hard to find a rental property in Christchurch at the moment for a similar price, with similar features (allows our 4 cats, stand alone, 2+ bedroom, space for a washer and dryer, not on a main road, dishwasher). We applied for one place but it was out of our budget and they weren’t willing to budge on the rent amount. It is not a renters’ market here due to lack of supply and huge demand, after the earthquakes. Part of me thinks it was stupid to ever come back to Christchurch now. Maybe we should have stayed on the Kapiti Coast.

If we don’t find something by the end of next week, I think we may look at options with shorter leases (there are a lot of rentals with short leases…so I’m baffled as to why our landlord couldn’t manage to find one for himself).

We got to take Vivian to an osteopath last week. It was really very interesting to watch. The osteo was very gentle and it was hard to tell she was doing anything to Vivian at all. When we left, she said Vivian may have a big sleep, a big feed, or a big bowel movement…she did all three the first night after the appointment, which was amazing (in the real sense of the word- she filled THREE diapers, and slept for first a 3-hour stretch and then a 6 hour stretch that night, and had a great feed after a week of crappy feeding). We have two more appointments set up. They are pretty costly, but seem to be worth it.

The osteo advised us to stop Vivian’s gaviscon…because she thought Vivian being on both gaviscon and omeprazole was overkill, and the gaviscon makes many babies constipated.  This isn’t the first time someone other than Vivian’s hospital pediatrician has told us they would treat her reflux differently. Our GP told us he would prefer we slowly wean her off of her omeprazole…but he had no issues with gaviscon. It’s so hard to know who to listen to! We did try her with no gaviscon for a day or two, but she was really miserable, so we are now back to at least two-four doses a day.

After the amazing night we had following that appointment, Vivian has gone back to being extremely unsettled and not eating or sleeping well again…one step forward, three steps back.  Today she didn’t even make it to 600ml. I am worried again about her losing weight now. When she was on the highest does of steroids she was taking closer to 1200ml a day.

We aren’t getting much sleep at the moment because she’s not getting much sleep at the moment. Ben is getting even less sleep than I am and I feel awful about it. It’s easy for people to say sleep when the baby sleeps, but when the baby doesn’t sleep, what the hell are you supposed to do then? I wish she would nap more for him while I am at work, so that he can get more sleep.

On top of that, she still has the oral thrush, which is really coating her tongue and probably her throat- Ben took her in to the hospital for her weekly neuro clinic appointment, and asked the doctor to change the anti-fungal medication she has been on for almost a month. She didn’t want to change it and told Ben to wait a few more days. I don’t think she really understood how badly the thrush could be impacting Vivian’s eating at the moment…and I was pretty upset about her medication not being changed. Apparently oral steroids (and steroid inhalers) can really allow thrush to gain a strong foothold in the mouth, so in most instances where steroids are being used, the drug that is commonly prescribed is flucanazole. I don’t understand why they didn’t prescribe that after Vivian showed no improvement three weeks into taking the first medication, Nilstatin. I called them this afternoon and finally got a prescription for flucanazole, so hopefully that works.

I’ll leave you with a video recorded last week of Vivian babbling to herself babbling…babyception of sorts :) She has gone quiet on us this week, and we’ve not had much babbling out of her. Hopefully she’ll start talking our heads off again when she’s feeling a bit better.

New life, in more ways than one

Forgive me bloggers, for I have disappeared. It has been over a year since my last post.

And so much in my life has changed. The past year has been an absolute whirlwind of change, and I welcomed it with open arms.

My job in Wellington ended in May last year. Thanks to a wonderful woman I used to work for, I was blessed to begin two part-time jobs in Christchurch, to make up one full-time job. For the first three months after my job ended, I lived in Christchurch and Ben stayed in Wellington with our lovely kitties until our lease there ended.

Ben and the kitties joined me in July, when we were lucky to find a reasonably priced rental in Christchurch among horrible rising rent prices. So many houses were damaged or demolished due to the earthquakes, which has resulted in a shortage of affordable housing here. It’s not a spacious house, by any means; it’s about half the size of our home on the Kapiti Coast, and only $30 cheaper per week, but it’s a good little house.

Ben found a new job as well and life for us resumed the familiarity that we once knew; we were home again.

While we were up north, I was on my way to being diagnosed with polycystic ovarian syndrome. I had started that journey before we left Christchurch in 2012, but it took forever to find a doctor’s office that was accepting new patients on the Kapiti Coast/in Wellington. I picked it up again when I returned to Christchurch. My very first blood tests pointed to the possibility of me actually being pregnant, which hadn’t happened on its own even though we hadn’t been preventing pregnancy for over two years. Ben and I really thought it wasn’t possible for us to conceive naturally at that point, but alas, we finally did it!

We built dreams and hopes for the new life I was busy growing. We planned and prepared. We were so ready. We had been waiting for this for so long.

In June 2014, our family grew by two tiny feet when our daughter was born. Her birth story and journey thus far will come in another post, one that I desperately need to write for myself.

For now, I am amazed at how quickly days blur into nights and back to days again. And at how well I am surviving on naps (reminding me of my days as a breakfast chef). And how astonishing it is that I can love someone so fiercely that I’ve only known for two months. And how lucky I am to have such a devoted husband, who is becoming the most wonderful father to Vivian.

Vivian

What’s new in your world?

Busy spring is busy

Just when I think I’ve settled into a nice routine, another big change happens.  There’s no way I could’ve done the Ultimate Blog Challenge this month.  Kudos to those of you who are!  And to those of you preparing to do NaNoWriMo.

No more working from home on the weekends soon.  I’ll be working a more solid Monday-Friday.  No more days off in the middle of the week that were so handy for running errands!  I have never had weekends off for any extended period of time, so it will be different.

Ben’s job has had a major delay that means he has the next 2-3 weeks off.  Although we could really use the money, part of me is sort of happy about that, because I’ll have more home-cooked meals made by his hands.  I enjoy cooking, but I am a firm believer that things taste better when someone else cooks for me.    He’ll have more time to bake new healthy treats for us.  I keep meaning to post a bran muffin recipe that he’s been making every two weeks or so.  Must do that this week sometime.

Weeds, weeds, everywhere!Garden updates:  I’ve discovered that this place is heaven for weeds.  There are thousands of weeds sprouting in that veggie bed…I’m going to spend the next year picking them out.  It’s horrible.  I’m guessing this is because the landlord just turned the soil over before we moved in.  I really don’t know.  I never had so many weeds to get rid of in Christchurch at either house we lived in.

My arch-enemy cleavers is here as well, smiling at me from beneath the camellias and mandarin bush out front. Ok, I’ll stop grumbling now!

I planted some peas and beans in the garden bed about 10 days ago, and remember dreading the weather shortly after that.  So much rain in the past week and a half — some really torrential downpours — I thought for sure the peas and beans wouldn’t sprout due to rot or being washed out.  As I was glaring at the weeds today, I spied them pushing through the soil, so I’m very happy about that!  Will need to get some twine to make a trellis for them soon.

Growing cherries on the treeI’m fairly sure the lovely flowering trees on this property are cherry trees now.  Still not sure if they are eating-cherries or not, though!  They are still beautiful, even without their flowers, but they add to the weeds too.  Hundreds of cherry seedlings beneath the trees to weed out…it’s going to take me two weekends to get all the weeding done around here!   Not grumbling again, I swear.  I’m sure it’ll be good exercise.

And on the topic of exercise, I’ve managed to lose 12 pounds since August.  I’m feeling really good about that.  Ben and I joined a gym and for the first time I have a regular exercise commitment to myself.  I really enjoy Ben being my work-out buddy and I think having him involved is the difference this time around!  While he was working he was too tired to go, so I have been by myself quite a few times.  I am down a pants size and I can finally see my collarbone again.  Another thing I’m happy about.

Taking time to note these positives is what keeps me motivated!  Only 38 pounds to go to reach my long-term goal.

Have you made any goals lately?  Reached any goals lately? Let me know!

Wedding (not tomato) season

Well!  I picked a really bad year to start a blog about gardening (amongst other things).  This summer has been really crappy weather-wise, at least for tomatoes, which was supposed to be my bumper crop this year!

It’s (again) been a while since I posted.  And I don’t feel horribly bad about that (sorry!).  I’ve  fallen behind on reading all the awesome blogs I follow, but I’m slowly catching up!  I blame the annual leave I took in January.  Blogging has been an outlet for me, and when I took time off, I didn’t need to say as much because I guess I had more time to do other things?  Plus, the weather has still been really…not summery, so my garden (sadly) is not as awesome as I thought it would be, hence the lack of garden updates.

I’m on annual leave again!  And I’m getting married next Saturday.  Surprise surprise!

By Ícaro Moreno Ramos (Wedding Photography) [CC-BY-2.0 (www.creativecommons.org/licenses/by/2.0)], via Wikimedia Commons

By Ícaro Moreno Ramos (Wedding Photography) via Wikimedia Commons

I do love the idea of being engaged, but Ben and I have been together 7+ years.  I really don’t see the point in a long engagement, or a big wedding, so I looked at the calendar and picked a day that I would like to celebrate for the rest of my life.  The 3rd of the 3rd sounded awesome, and it’ll definitely be easy for Ben to remember (jokes, I swear).   Plus, it’s half way between my birthday and Ben’s birthday, and if you include valentine’s day being a week and a half before my birthday, I’ve successfully wrangled us a month of celebrating!  I’m pretty satisfied about that! :) Not that we really do Valentine’s Day, in a commercial sense.

I’ve also turned 30 since the last time I posted.  Being 30 doesn’t feel much different from 29, but that combined with getting married soon has made me miss my family a lot.  Especially my mom.  I always thought she’d be here for this, but life doesn’t always work out the way you thought it would.

I know some folks might be wondering about our wedding plans — there really aren’t many.  We’re having a private ceremony at home with a celebrant and Ben’s parents as our witnesses.  Afterwards, I think Ben and I will just enjoy our wedding day together.  No reception.  We don’t really know heaps of people and Ben’s a fairly private person, so I think it would be awkward to have a lot of people over when we really just want to be married, for us.  I’m hoping our friends will understand that and not be offended that they’re not getting invited to a reception. We’re not even doing a wedding cake (neither of us are crazy about cake).  We thought about having a barbecue, but I’m not really sure we’ll even do that.

By Johnnie Allen [Public domain], via Wikimedia Commons

Joe Falcon and Cléoma Falcon on their wedding day April 27th, 1932

Having spent the last few weeks looking at wedding stuff, it really amazes me.  The money there spent in the wedding market is unbelievable.  I can’t imagine spending thousands of dollars on a wedding. Many of the Western wedding traditions as we know them didn’t really exist until the last century, honestly, not a lot of it appeals to me.  Don’t get me wrong — I’ve been to a few weddings and they’ve been really beautiful.  They’re just not for me.

I wasn’t keen on the idea of wearing a dress, as I’m not really a dress (or skirt) kind of person, but I know Ben really would love to see me in a dress, so I managed to find one on my birthday.  It wasn’t an easy feat considering most of the stores out there don’t even carry my size (NZ 18).  It’s not a traditional wedding dress because it’s royal blue, but it fits me well, and I feel beautiful when I wear it.

I want to find some cheap live flowers (white and purple maybe?)  to plant in my tire planters (which have remained bare after I pulled out the nemophilias), but that’s about all the decorating I’m doing.  We’re still saving for a car.  The highlight of my birthday (after finding my dress) was buying a beautiful kaftan top for $5 when it was originally $60.  I don’t want to blow money on dead flowers, however pretty they are.  At least with live flowers we can enjoy them for a few weeks after the wedding!

Call me crazy if you want (a few people I know seem were flabbergasted by me not really wanting to get a dress), but I’m really happy about it all.  That’s what matters, right?

Have you ever gone the non-traditional route with something important?

January 2012 Bloom Day

It’s the 15th!  For some folks, it’s pay-day.  For me, it’s Garden Bloggers’ Bloom Day, kindly hosted by Carol at May Dreams Gardens :)

This is the most exciting Bloom Day I’ve ever experienced!

Some things are coming to an end in the raised garden beds — the peas look like they’re about done, and the marigolds are being heavily deadheaded, but other things are still on the up and go.  It’s been pretty warm here (for New Zealand, anyway) so trying to keep on top of the watering with the water restrictions we’ve got in Christchurch have been hard on everyone.

Fiery marigolds

More marigolds

Lemon blooms

The new lemon tree Ben’s parents gave me has so many blooms on it! They smell so good!  I’m not sure whether to leave them or to pinch them off though.  There are so many, and it already has fruit as well.

Meyer lemons

My coriander’s going to seed! Will plant some more shortly.  It’s so easy to grow, and even easier to eat! :)

I spotted the first flower on my capsicums!  Exciting.  I wonder what kind it will be — I ordered a ‘rainbow mix’ of tomatoes and capsicums.

I know he’s not a bloom, but I thought he was pretty, so Sir Jumpsalot gets to be in this post.  I thought he was going to jump on me several times — he kept following my movements and then turning towards me lol.

Some kind of cute bug in a rose! :) Some weird things have been popping up in Ms. Chameleon’s foliage lately…

And that’s why today has been so exciting! :) Ben finally asked me to marry him.  Or in his words, “make it official,” because he’s considered me his wife for quite some time already.

What’s blooming in your garden (or life)?

Fiddly Dee Potatoes

I’m dedicating a blog post to potatoes today.

When I was younger, sometimes we would have mashed potatoes for dinner (sometimes with skin, sometimes without), with peas and corn.  Pretty cheap, probably not enough protein, but it was dinner.

I usually love potatoes.  Probably not as much as my dear Ben, though, but they’re pretty high up there!  I’ll take them any way I can get them.  Mashed, in soup, roasted, potato cakes, potato rösti, hash browns, gnocchi,  french fries, and lastly, potato bread (which I haven’t had for about 7 years. Sadness).  Oh! Let’s not forget potatoes in a tasty peorogi, either.  Yes, I am a fan of potatoes.

Until two weeks ago, that is.

Potato sprout

No innocent potatoes were harmed in this post.

I forgot to mention that I planted some seed potatoes in old recycling bins right before I left for Wellington.  But this blog post isn’t centered around those innocent sweet little seedling potatoes.

I filled my first raised garden bed with a mixture of things, one of them being leftover soil from the old raised bed that’s on the side of our house that busted apart on me.  There were potatoes growing in that old garden bed that have been there for years, and I thought I did a really good job at not transferring any over into the new garden bed.

I was wrong.

Potatoes really persevere.  They are hardy little bastards!

That bed was set up on the 26 of September.  I got back from Wellington on the 30th of October to find a freaking potato plant poking up between the green lettuces in the bed.  And not a small one, either.  A very large shoot, with lots of green leaves.  I was only gone for 4.5 days!  It wasn’t there when I left. I would’ve taken a picture of it, but I was just so shocked to see it there that I ripped off the shoots and hoped I wouldn’t see it again for another 4 weeks.

Well, less than a month later,  there’s another one in the other end of the same garden bed!  I decided I didn’t want potatoes in my raised beds, because they tend to take over things.  BAH.

Potatoes have moved down a few spots in my favorite food list because of these little renegades.

Ben just laughed about it.  Blatant potato-love going on there.  No regard for my garden plan!

Argh, we keep buying things

We’re supposed to be saving for a car, amongst other things, so I’ve decided to publicly out us as consumers. This is a first world problem, I know.  Forgive me if I sound like an annoying brat in this post.  It’s not my intention.

Ben and I used to live on one minimum wage income when I first moved to NZ and wasn’t able to obtain a working permit right away.  We’ve come a long way since then.

We aren’t materialistic people (at least I don’t think I am?).  My pets, friends, and family mean more to me than any of my belongings.  Things can be replaced.  They come and go from our lives, and that’s the way I like it.  I think when you move across the world with only two suitcases of belongings, you realize that your life isn’t made up of what you have.

We don’t have many big new shiny things.  Ben’s mobile phone has been dropped into a furnace and looks like a burned piece of plastic, but he doesn’t want to buy a new one because it still works (I think it could actually be hazardous to his health).  Mine is a lovely hand-me-down from an awesome coworker.  We did just buy The Beast, but that was on our list of things we were saving for, and we are using it daily!

But we keep buying little things lately.  Maybe it’s because we’re finally at a point of being comfortable with two full-time incomes (this has never been the case for us while we’ve been together).

For instance, Ben got a hammock the other day, when he got our new garden security. Ben's hammock

I’m really happy he got the hammock (and the garden critters), because I know he’s wanted one for years, and we’ve never had anywhere to put one.  And it only cost $20 so I can’t really get mad at him for it, either, since it’s not like he spent a fortune.  He loves it, and will get many hours of enjoyment out of it.

But we both do this.  We buy little things that we don’t need because we want them.  And these little things eat away at our paychecks.

Pizza.  Garden security.  Or things like Winter’s paw happen and eat away more money (that was needed and not wanted, but just an example of what happens).

It has to stop if we’re going to save for the things we actually really would like to have in the future.

I’m making a pact with myself.  No more needless spending.  I shall be nagging Ben too, in the most loving way.  We’ll see if he thinks it’s loving? Harhar!

I’m also going to make a list of what we’re saving for and stick it on the fridge so we see it every morning, and so we can focus on that.  Seeing things helps.

Sadly we’ve never been the budgeting type (unless we absolutely had to, for things like immigration fees, or when we only had one income, etc.), and I know you’ll probably think that’s ridiculous.  Maybe it’s time to go back to a strict budget.

Is there anything you’re saving for?  Do you have any saving tips that you found made it easier for you or your family?

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