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

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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.

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:

EEG, Early Intervention, and Prednisone

Vivian’s first EEG was done on Tuesday.

Ben is unfortunately sick with a cold/cough thing, so we thought it best he didn’t go to the hospital to make anyone sick. This meant it was just me and Vivian headed to the hospital. She cried the entire way there :( It was really rough.  She cried the entire 15 minutes I had to wait to get a parking spot. When I finally got her capusle clicked into our snap’n’go stroller system, she passed out from crying so much. Then of course, once we got into the appointment, she screamed the entire time they fitted the special cap on her.

The poor technicians were just beside themselves (and me too at that point), and started asking me if I’d tried this and that. I had to tell them that no, she wouldn’t take a bottle like this and that no, she wouldn’t be interested in her pacifier when she was screaming her head off. It took about ten minutes for me to calm her down again and then she passed right out on my shoulder, which isn’t something she normally does at all. It was definitely sleep from too much crying, not from being soothed or calmed. I hate it and it makes me feel like a bad mom when it happens :(

We won’t know the results for a few more days, when we are due back at the hospital at some point to see the neurologist again, and to get Vivian’s blood pressure checked.

We finally were contacted by our early intervention provider, The Champion Centre.

We should have been referred on to Early Intervention the week Vivian was discharged from hospital (first week of July), but due to whatever crappy reason, be it shit timing or lack of good procedures, we only got referred last week and there is a 3-week wait at all of the four providers in Christchurch. 8 weeks of no support there for us and Vivian, after all we heard about was that our early intervention provider would help with this or that.  I am angry about this. I am angry about a lot of things that have happened in hospital and things that should have happened in hospital but didn’t. It seems like a lot of times we have fallen through cracks in the health care system with Vivian and she’s not even 3 months old!

We had our initial meeting with someone from Champion Centre yesterday and will be going to a meet & greet on Monday to meet the team of specialists that will be working with Vivian in the months and years to come. These include a physiotherapist, a speech and language therapist and an early intervention teacher. It’s a lot to take in, and I’m not sure we made the right decision. We could have chosen to have a home-based provider, and I’m starting to think that might be the better way to go because Vivian is so easily thrown off of her feeding and sleeping if we have to take her anywhere. They will most likely do the first few sessions with Vivian at home due to the prednisone’s immunosuppression side effects, but after that we will need to take her in once a week.

Ben and I are running really low on energy this week and with Ben sick it’s been really hard on both of us. He’s been absolutely amazing even though he feels like death warmed over and taking extra precautions around Vivian to make sure she doesn’t catch whatever he has. Fingers crossed she doesn’t get sick! We have appointments every day next week, so I can’t afford to get sick either.

We started Vivian on the prednisone Monday evening.

It tastes sweet at first but then has a horribly bitter aftertaste. I think she’s starting to show some oral aversion now…she used to be a hardcore pacifier fan while falling asleep and now she won’t take it after having prednisone, unless she is very, very sleepy. She spits it out and grimaces, or grimaces if you even put it near her mouth.

Her poor tummy has been very sore yesterday and today- she has started spitting up (spilling as New Zealanders say) a bit and she’s never done that before. She is also crying a lot more than usual, and she is already a baby who cries *a lot*.

You can just tell it hurts. She brings her little legs up to her stomach and screams. And it’s messing with her bowel movements as well, giving her horrible gas and painful bowel movements. Not fun at all. And this is only the end of day 2. I don’t know if we can take 6-8 weeks of this and still have a child that is willing to eat on her own. :( Her intake volume has been down the last two days due to her not feeling well. I am doubtful she will gain weight this week at the rate she’s going and the amount of crying wasting her calories.

I wish we didn’t have to syringe any medicine into her mouth at all; this makes medicine number four, and we have to give it to her four times a day, with food, which isn’t going to create an awesome association with her food.  I thought we might be able to disguise the prednisone in some breast milk, but it’s got too strong of a taste, and some parents of IS kids have said their child refused to take a bottle after starting on prednisone, so my idea of putting it in a bottle is not going to happen.

Vivian is exclusively bottle fed because she refuses to latch for breastfeeding. My c-section, her month-long stay in NICU, the pacifier being introduced (without our permission) by hospital staff, and all these medications being syringed into her mouth have caused some nipple confusion. And my letdown isn’t fast enough or long enough for her, so she prefers the bottle. If she starts having a bottle aversion, we’re really screwed.

All of the above being said, we still managed to get a few smiles from her today and she had a long conversation with Ben after he discovered she likes it when he makes monkey noises at her. :) I hope we can still get at least one smile each day while she’s on the prednisone. It looks like it’s going to be a hard couple of months ahead for us. I don’t know how other parents get through it. One day at a time, I guess!

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