Unpopular decisions, mixed feedback and a lovely little girl…..

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A few unpopular decisions have been made lately. They’ve definently made me unpopular in the eyes of others……..

First one was that I chose to give up my position as Supervisor at work. The simple reason behind it is that as a leader in a company you need to be fresh, able to make the right decisions and quickly. I’ve found lately that my capacity to be able follow through with such tasks has disappeared, we’ve got a lot on our plate at home. It’s taken it’s toll on us physically and mentally and family comes first, especially in this case.

Life has changed, measures need to be put in place to ensure Odrun and I can be the best possible parents we can. Odruns on maternity leave until December, then I’ve got 7 weeks which I’m gonna take out over a 17 week period at 2 days a week.  Odrun works an 80% job, which basically means she works 4 or so days a week plus a weekend a month and 2-3 night shifts a month. I can’t see her going back to that same amount of work, ideally I would like to go part-time as well. It’s something that’s gonna effect our personal economy but something that needs to be done if we’re gonna stay on top of things.

Jennifer’s calendar is full, this week we’ve had 4 appointments . One of which was a trip to Bergen, 2 hours drive with ferry, an hour waiting, 2 hour examination (that should have taken half an hour but the nurses had problems with this machine) and a 3 and 1/2 hour trip home. Longer than a work day and without any breaks……

But Jennifer continues to be a happy smiling little baby, except when she’s having problems with her reflux or we’re doing some training exercises with her. She was so happy to get back home that day we went to Bergen, started smiling and talking as soon as we came in the door!!

The hospital isn’t helping much, they won’t get us an appointment before September to follow-up on her reflux, her medication has almost run out and we’ve seen some changes in her behaviour after her meals. Usually after her meals we’d have to change our t-shirts cause she’d burb and half of her milk would come out with it, now she burbs and tries to burb again but it seems to get stuck, causing her a fair degree of pain. The good news is she has started eating porridge with a spoon, we have to lay her on a pillow at a 45 degree angle to help her  antigravitationaly. That stops her tounge poking out all the time. One of the side affects of her brain injury is she has tounge reflex that she doesn’t have much control over, seems to be worst when she’s just eaten. We’ll gradually move her into a 80 degree position, we talk to her and count down when the spoon comes closer to her mouth, she opens up at the right time and gobbles it down. So happy we’ve gotten this far with her, she gets a lot of wow’s from nurses about the fact she is not being fed through a tube given everything she’s been through.

It’s possible that her esophageal sphincter (muscle that closes on top of your stomach) is becoming stronger, I’m really not sure though. The last doctor we saw, said that they won’t see us before she’s older. I know of a few babies who’ve had operations to fix that muscle that were a lot younger than Jennifer. Whats the harm in examining it anyway….?

Jennifer is a celebrity at the hospital, seems everyone knows her and her story given this is so rare in Norway.

Lucky for us Jennifer is receiving help from our local physio, who comes home to us once a week and gives us exercises and tips on stimulating Jennifer.

She has a lot of experience, and is orderly. She has wanted to help us since Jennifer was very small and has been great at giving us tips and so on. Without her we wouldn’t be getting any help what so ever and for that we are very thankful!

Visually impaired baby’s  are slow to develop and will not move from their back until they can safely distinguish between different sounds and have the courage to explore that sound. That usually happens when they’re around 1-year-old.

The physio is very keen on getting Jennifer comfortable in a chair, Odrun and I were skeptical at first, we didn’t want to confine Jennifer to chair so early! But we can see some benefits, she just received a new chair with a table in front of her, great for exploring with her hands. As long as we don’t get lazy and leave her there!!

We have exercises where we get Jennifer to realise she can move her body in different ways, we want to do them and Jennifer’s needs them. I roll her onto her side and tickle her, she laughs and smiles but when I let go and she eventually loses her balance she gets very scared, you can see the expression on her face, it’s like she’s falling and doesn’t have control. She hates doing them after that, she screams in discomfort and I want to be able to come home from work and have the capacity to be able to help her. People think she’s just a baby, they’re not that much work.

Try being visually impaired with a motor skill delay! You wouldn’t know where your arms are, what they’re for or what the hell you’re supposed to do with them. And if you did, you don’t have the co-ordination to do what you want to.

The world is everything that touches you, not what you touch.

You regurgitate your food and have heart burn every time you eat, you never get a good sleep during the day because your food is always coming back up. You need to be shown you have a front and a back, 2 legs and that lying on your side or your stomach is not the end of the world. That’s eventually how you will discover the world.

It’s Odrun and I that have to show Jennifer the way, it’s time-consuming, it’s hard and it’s not understood by those other than ourselves. But it has to be done, and I said before I would do anything for my daughters, even if those decisions make me unpopular.

We’ve met with a sight specialist, he was of the same opinion as we are, that we can get the most out of what’s working in the visual cortex of Jennifer’s brain. He mentioned that we need to stimulate her with mirrors and lights and anything else Jennifer pays attention to with her eyes.  He gave us some really good info on how to train and make sure Jennifer uses her eyes, so simple but would never have thought of it ourselves. It was a reward like game, we simply put a toy in front of her face, when she looks at it for 2 seconds we can shake it or move it so it makes noise, plays music whatever, when she looks again we put it on her hand, three sensory stimulants in one game. Training her to use her eyes as a purposeful sense, so simple but so smart……..Unfortunently he is retiring in September, so probably won’t see much of him again……..

Also been to Bergen for a VER test, electrodes on the back of Jennifer’s head and she had a light flashing at her with. It measured if the brain received the signals  through the eyes. Nerve damage may also cause her some visual problems.

The book: https://www.smashwords.com/books/view/169114

Definently some mixed feedback about publishing a book after my blog story, bit more detail in the book though.

Most of you that are reading this will know about the book, and have been positive towards its publishing. Turning a negative into a positive a friend said, good for you. That’s a true friend!

Not as popular with everyone, but I guess everyone is entitled to their own opinion.

All of my friends and family have been so positive towards the book!! I’ve heard from people I haven’t spoken to in 10 years showing their encouragement and support!

A lot of people have said to us, “Is there anything we can do, I wish we could do something for you!!”  “We’re so far away”, or “we feel so useless” Well, now you have the chance to do something!

Stimulating and developmental toys costs about 3 times that of normal toys, and it’s not like we can pick and choose those toys we want Jennifer to have, she needs them! The other day Odrun and I looked through a catalogue of toys for visually impaired babies, the cheapest toy cost about $60 and was a mirror like toy that changed colours depending on the angle you looked at it. Jennifer had become a little bored with her surroundings over the last month or so, not so happy as she has been. So I bought one of those mirrors and she loved it. It doesn’t take much, but she talks and shouts and gets all excited when she looks at it. So rewarding to see.

It’s not like we’re poor and need money desperately, it’s not gonna sell hundreds of thousands of  copies and make us rich! But it’s a chance for some people to show they care, and a chance for them to do something that makes them feel good and gives them a chance to feel they’ve helped and supported! And it’s a chance for us to be able to give Jennifer the best financial support we can, no matter how big or how small!

It’s a chance for someone to gain another perspective on life, to understand how unlucky some human beings can be, to not look the other way when someone with a disability is vomiting on himself, or throwing a fit in a public place or something like that.

We don’t have a clue how to raise a visually impaired,motor delayed baby, and help is limited at best!! We just have to try different things and see what Jennifer likes and what gets her going. And we have to follow her routines, regardless of the screaming!

Money,certainly not the driving factor behind publishing, but when opportunity knocks it’s stupid not to give it a go!!! I would sell my house, my car, my tv and the clothes off my back to give Jennifer every chance of a normal life. The fact that her short existence has cost somewhere around $10,000  (of what I can remember) hasn’t even registered before now. It was a “had to be done” situation.

We had over 800  hits on  this blog in the first week after I published it, how I don’t know, between Odrun and I we certainly don’t know 800 people or have regular contact with even half of them. If the book is half as popular we’d be able to set up Jennifer’s room with all sorts of sensory and stimulating  toys, all for her benefit.

On this page is a slide show of Jennifer’s treatment, this is the everyday life, this is the hard work that will pay off, this is the heartbreak that we have to watch and go through.

It’s Odrun and I that have to see the look on people’s faces when they wonder what is wrong with Jennifer. It’s us that have to hear people talking around a dinner table  about how bad that brain-damaged baby is and how he or she compares to Jennifer and what they think Jennifer will be like. Like we’re not even there, like this is easy for us, like they can hear a bad word about their children without giving a dirty look or just plain rejecting the thought that there is something wrong their children. Having people who wanna help but still having the arrogance to deny their’s something wrong.

I’d like to see those kinds of people dealing with what we’re dealing with. So proud of my wife, so proud of how far we’ve come in such a short time, how positive we’ve become around our kids, our perspective on life and our marriage.

This is what will give Jennifer every chance

This is what will pay off

This…………..is the reality!

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5 Comments

  1. Keep the dream alive don’t let it die.
    You’ve gotta keep the faith, bring what’s deep inside your heart
    Don’t stop!
    Never give up!
    I’m so proud of all of you

    Like

  2. So proud and inspired by your strength. Family is everything. Love you guys and looking forward to our newly purchased copy of your book gracing our shelves xxx Cass & Ian

    Like

  3. Ryan I am deeply disturbed to think that people are so narrow minded to criticise your efforts to give Jennifer the best chance in life, they should walk a mile in your shoes, your family is behind you, you are a wonderful human being and have a huge heart and I am so proud of you and Odrun, don’t ever give up, Jennifer will reward you with so much love and show you just what she is capable of, us Aussies have a never give up attitude and you came from the best stock, a fare go for every one that’s how we work. Keep that lovely smile going and don’t look back.
    Love Aunty Carol.

    Like

  4. The two og you seems like such a strong couple and dedicated parents. I have been following you’re blog with tears in my eyes, but also administration. It seems like Jennifer got the best parents she could and I hope all the best for all four of you.

    Like

  5. Det er tøffe tak de har vore gjennom, og fleire vil det bli. Som foreldre vil en alltid prøve å legge grunnlaget for at neste dag skal bli bedre enn den forrige. Med Jennifer krever det nok meir enn vi forstår. Prioriteringen din forstår eg fullt ut. Lykke til videre

    Like

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