Nov 25, 2009

Time to smile

I hope I am not jinxing things. It feels like we are nearing the end of an uphill, downhill, year- long endurance event. And we've survived it.

This year has been such a steep learning curve- but most of all it has been a time of gratitude and constant marvel at how understanding and supportive our friends and family have been.

We try not to talk about Ira too much, but people are genuinely interested and keen to hear 'he's doing great'.

Thank you to everyone around us for sharing in our first leg of this incredible journey that is parenting, working, and enjoying time out with friends and loved ones.

To say that we are looking forward to the Christmas holidays is a huge understatement. Time to reflect and just appreciate being together, relatively unscathed (aside from the second ear to ear scar proudly poking through Ira's messy curls).

Edie refers to Ira as Ira caterpillar, because she thinks that his scar looks like a long caterpillar. That's fine by us, as she refers to herself as Edie Birdie and has done since the age of about 2. She's into her imaginary sisters at the moment too. Her most recent sister was called Moore Wilson (after a Saturday morning session grabbing the weekend's fare). An improvement on the sister before that who was called Terrified.

Ira so far is just sticking with the babababa's. mamma's and dadda's. We're pretty ecstatic just to hear him squeak, babble and to see him flash his infectious grin. He had his first meal at Cobb n Co the other week (photo below) when we had cause to be in the fast- paced Wairarapa. It is so satisfying just to see him get a kick out of normal kid things.

Oct 24, 2009

Cranial Vault

Very quick update whilst home doing washing, Edie napping and Benj taken over at hospital.

The surgery went really well, no complications. He was under for a long time though- 8.30 in the morning until 4pm when they wheeled him into ICU.

The length was mainly because before they even started the forehead remodelling, he had his ears drained, new ear tubes placed, a conductive hearing test and an MRI.

Good news on the MRI, his brain looks tip-top. No raised pressure, plenty of room, so they decided against putting springs in the back of his head in order to pull it out for more room. This plus the fact that his sleep study was good, avoided anything on top of the forehead advancement.

His surgeons have said he shouldn't need a further one, so next big head surgery (if all goes well) would be the Le Fort III. What a great time if he could get through to then. Although he has final syndactyly release early next year.

So, he is very swollen which we knew to expect and is pretty sleepy most of the time, but has been up for cuddles with Dad today.

He has had a couple of throw ups which were fairly large, but they're just monitoring that at this stage. He's pretty thirsty so it's hard not to keep giving him formula- but if he schlurps too much back, it's probably not going to stay down. He's not complaining too much yet!

We're so proud of Ira.
Will update again soon.

Oct 19, 2009

Lemonade all the way from the States

So many people tell us that Ira will change our lives in a way that we never would have imagined possible.

That might sound airy fairy- or to the sometimes cynical among us (me), evoke a quick response, of yes, he will introduce us to hospitals, doctors, medical knowledge, special shoes, sleep studies... But, what is now becoming increasingly more evident, is the fact that this little guy is opening up a world/way of life that we never would have dreamed of, or had the privilege of being a part of. Ira brings us such strength- you can't help but feel proud being around our little fellah- he just gets on with life with such gusto, regardless of his differences.

We have ‘met’ so many wonderful people (unfortunately as yet, most just through the world wide web) who have amazed us with their passion, enthusiasm and encouragement when dealing with the trials and tribulations associated with surgeries, recoveries and adaptation. We have also met and formed relationships with Ira’s surgeons and doctors who we are required to place all our trust and confidence in. We are very very lucky to have such experts around us. We are also very lucky to have friends and family who are so supportive and kind.

So- on to the lemonade:

One of the couples we are in touch with in the States have a fantastic blog. It makes me reassess our lives and what we can/could do for Ira every time I read it. This, in a good way. I am always more inspired, more enthusiastic and get that fuzzy warm feeling, just knowing that others are going through very similar experiences to us. There are also other amazing blogs we follow- see our link section- which create similar feelings of ‘phew’ we’re not that far off the mark after all, and why didn't we think of that- or hmmm, I don't know if Ira is up to that stage, is there anything we can do? In addition, we are incredibly lucky to have a list-serve which was set up by a couple some years ago when they had their daughter Teeter who also has Apert Syndrome. We get daily emails from the list which parents write in to with queries, answers, advice and experiences – it is invaluable. Thank you again, Cathy and Don.

So, the lemonade; my ‘friend’ Taryn, mum to Aiden included our blog in her list of blogs she considered a good one! Check out her Making Lemonade post: . We feel unworthy compared to the incredible journey Taryn writes about- she has a wonderful way with words and is quite obviously an incredible mother to her two boys.

Read about other people's journeys makes me feel so privileged to be Ira's mum. Someone very close to me said the other day how lucky Ira was to have chosen us as his parents. Some days I still think about what would have/could have been. But I can genuinely say, that as this first year of getting to know our little boy has passed, I now feel like I am the lucky one to have been blessed with our little Ira Charles. I know he will touch the lives of many people in a way that is different to his sister and different perhaps to his friends. He already just smiles more.

As for life in the fast lane- Ira’s first major operation on his head is this Thursday!

The countdown looks like this:

Monday: I am currently at work, needing to work, but focus is a little askew!

Tuesday: Benj takes Ira to hospital during the day for an ECG and an Echo to check his heart. Just a precaution as he has to work a little harder to breathe so his little heart may be placed under additional strain. Fingers crossed on this not being the case.

Tuesday night: Ira and Benj go to Bowen Hospital for a sleep study. A little late for my liking, but nevertheless, better late than never. Hopefully, Hopefully, Hopefully, the results will not show too significant Obstructive Sleep Aponea- so that a monobloc may be avoided.

Wednesday 2pm: Meet with Cranial facial surgeon and Neuro Surgeon to discuss surgery. Who incidentally, I just received a phone call from saying that it is unlikely that Charles will perform a monobloc!!! Hooray- again, fingers crossed still.

Wednesday afternoon: Ira admitted to Wellington Hospital for Surgery the next morning.

Ira had his bloods checked and they showed Iron deficiency and also a little low on protein. Bad parents not getting enough red meat into him. It is a little difficult because at 14 months Ira still does not have any teeth. Everything has to be mushed up. He’s now on red meat for lunch and dinner every day, plus a shot of Iron supplement which fortunately is cherry flavoured and he doesn’t seem to mind.

It’s all go in our household. On top of this- Benj is now doing some work on a film with his big sis- he commented the other day on how nice it is working with Sarah and getting to spend that time together. I am trying to get things finished at work before I bow out for a week. Edie 3 continues to be full of beans. She has the funniest comments and mannerisms at times. We set her down for lunch the other day with her plate of goodies and head in hands closely followed by a shoulder and hand shrug; “The problem, is, I don’t have a drink”. She's also started using 'generally' in front of many things. 'Generally, I would like you to read the dolls house book tonight".

We’ll update after surgery!

Sep 16, 2009

A first birthday retrospective

Hard to believe Ira's a year old. Mind you, picking up the little wriggler, he's starting to feel all of his hard-earned 12 months. I spoke at the weekend for the Orthopedic Nurse's Conference about our experiences with Ira and how he (and we) cope with his surgeries and recoveries – I'll put the presentation up as a post.

In the process of composition, it gave me an opportunity to go back through the last year in photographs, I thought I'd share some with you. .

Day One in the Neonatal unit

My colleague Gareth Barlow did the bone carving, Tiki Toa Puaki – Emerging Warrior – "What emerges from great challenges, are great warriors".
You can see more of his great carvings at his website Rongomau

First operation recovery to dilate his nasal passages at Starship hospital, Auckland

They sent a probe into his skull to check the pressure on the brain and narrowly avoided getting a shunt to drain spinal fluid – a major relief.

First syndactyly release on his hands.

Grandma bakes, ices and pipes [same animal decorations from my first]

Second head surgery inserting springs in back to let the brain grow out not up

What a year. These two make it feel like a dream – a beautiful one at that.

Jul 21, 2009

Mid winter malaise

It’s been a while between posts. Benj and I have been traipsing through the daily chaos that is kids, family, work, friends, West Wing, The Wire, pets and bills bills bills (roughly in that order). Winter power bills – my goodness those power companies must make gigantic profit.

Last month in review; well Edie turned 3. That is still hard to say out loud. We decided not to throw a big party this year (essentially my call, being lazy mum) and just invited the family over and a couple of close friends. Helium balloons which were a hit (idea stolen from Louis’ and Jemima’s party thanks) cupcakes, presents and wine . Hang on, that really is a party isn’t it.

Edie queen of the party, invested her time in present opening obligations in her tutu from Aunty JP thank you- we now try not to mention the T word. She’s had a few nights where we’ve given up and just let her sleep in it. Despite proudly holding up 3 fingers now and being a big girl, she still resorts to ‘just being a little girl’ when circumstances suit. Some of those being, the need to have more stories at night, the need to have fairy bread, the need to avoid having a get the drift.

Ira also enjoyed the party, but ended up at A and E (or is it ED these days) with Benj at 8.30 that night. We’d noticed the scar on the back of his head from where the springs went in was looking sore and weeping. We both felt shattered Sunday night, after a big night out Friday night and Edie’s party that afternoon, we were ready to collapse into bed. We toyed with the idea of taking him down in the morning (his scar had done this off and on before) but decided that best for Benj to go. We felt a little overcautious. Long story short after a 2 hour wait Ira was seen and booked for emergency surgery the next morning to remove the springs. Transpires that our poor wee babe who’d been a little more grizzly than usual of late, but always with time for smiles and laughing, had a chronic infection in his head. The surgery was apparently not too tricky, they stapled his head back up and he and Benj were home in a few days. He’s just had the staples removed. Plan from here is uncertain, I guess we’ll have to see when we meet with his surgeons if they think his head will stay rounded out without the springs in there. They were going to come out ultimately, but not until about October.

On to lighter things, he is now doing great. His hearing was checked today and this seems to be all good- and he’s getting more and more keen to push up and attempt to crawl which is still translating to rolling or pulling himself along the floor. He continues to be our hero, he makes us so so proud to be his mum and dad.

Edie and Ira make each other laugh. Ira shrieks and giggles at Edie’s gestures, silly monkey statements and funny noises. Benj is starting to look for some work. Ira will be 1 next month, gulp. That is also a strange concept. So, we’ll have to be onto plan B for some more childcare. Aside from birthday parties, hospital stays and a busy social life, I guess I could sum this month up as having a heavy emphasis on food! We just seem to be having the most delicious meals lately- thanks to the very talented cook in our household.

Must get Benj to post some more recipes. Tonight’s menu is pork spare ribs. Last night was a hearty beef casserole, the night before fish pie (delicious, thanks Bex) the night before that, our wonderful nanny Katalin made us a traditional Hungarian dish. Spoilt.

Jun 8, 2009

Nice wine, shame about the steak

We've been talking about this for some time. Our good friend Geoff keeps wine. He's got some great reds in his cellar that he's been looking for an opportunity to drink. He and I have been hatching a plan to take the cork out of one and drink it with a bloody piece of red meat. Or a piece of red, bloody meat. Or a piece of red meat, bloody [thank you waiter].

Enter the 1988 Penfolds Grange Hermitage. I thought he might surprise us with a ten or 15 year bottle of Coleraine from the mighty Hawkes Bay. Instead he rocks up with a 20+ year old bottle of what is widely regarded as one of the world's greatest syrahs outside of Bordeaux. "Well this will be interesting" mused Geoff. It'll either be amazing, or after 20 years, it may have lost it."

It was amazing.

After 20 years, I would say it could have gone for another 20. It was youthful. In my days as Sommelier at Petit Lyon back in the 90's, I've served younger French classics like Chateaus: Margaux, Cheval Blanc, Haut-Brion where age was the predominant taste. Not here. I felt kind of guilty drinking it, but Geoff is the kind of wine keeper who sees it as a beverage, not a commodity. "So let's drink it" he says, I'm sick of staring at it".

Sadly I let the side down with the bloody red meat, which was not as bloody as I would have hoped for it - apologies Kent, you trained me better. All I can say is don't trust the
meat thermometer. Follow your instincts when it come to doneness (apparently this is an actual word. I tend to think of it as a term celebrity "chefs" use because their command of the King's anglaise is about as interesting as the dishes they slap out to fill a commercial half-hour on cable tv. I'm prepared to be told otherwise and have to admit, food shows have a certain narcotic quality that make it hard to get off the couch and get into the kitchen. Food should not be more fun to watch on the box than it is to cook in your own home, but that's off-topic and I digress). The Dauphinois were al dente and creamy which sauced-up the plate and the rocket salad was peppery enough to match the wine.

Desert was an after thought. I wanted to do a flan, Maria was after chocolate pud. One mis-step follows another alas and instead of calling my trusted mother for her self-saucing choc recipe, I pulled one down from the interweb by Allyson Gofton, which I will never to again.

So, it sounds like the menu could have been a disaster movie set in my kitchen, but to be honest everyone ate their well done steak and made pleasant with it. Desert was really just a formality so we could get to the cognac and stand by the fire (first of the season) and reminisce the future perfect. By the end of the evening we all agreed that the Grange was the real winner - as it should be. An additional bonus is that Maria has discovered Lanson Fils to be her current champagne of choice, thank you Dominic.

It's also nice to update this blog with something other than talk of Ira's operations or Edie's latest escapade. Normal people things like having friends round for some chow is somewhat of a novelty these last months.

Next post I'll tell you about the Latour and Antipodean we drank this weekend just gone.

In vino veritas - it is said

May 17, 2009

It's all part of the plan...

These last couple of weeks have been nothing short of ups and downs. I have now come to accept the concept that life is more than likely going to follow this pattern for some time. I aspire to be the friend, mum and wife who can roll with the punches and exude flexibility and effortlessness in my ability to change tack. I am not like this, I am inherently structured and keen on plans and order! However, my efforts to remain wed to plans are slowly giving way to acknowledgement that rigidity and all the planning in the world just can’t work all the time. Some days we do (perhaps somewhat naively) reach the point of thinking wow, life is beginning to be a little consistent, but then bang- something happens that quickly and swiftly pulls the rug from beneath your feet.

Last post Benj updated on Ira’s recovery from surgery. He did so amazingly well for his first major surgery on his head. About 4 days later however, he went down like a tonne of bricks with a temperature nearing 40 degrees Celsius and a definite change in personality- no more squeals and chatter, but more sleep and grizzles. After another stay in hospital we got him home and he has been a very happy boy. Lots of smiles and chatter - however we think he's having trouble with teeth now!

Edie has me fooled a lot lately.
Sometimes I have to stop and stare when she is talking to me- to check that she is really only a 2 year old. She was bouncing around on a chair in the bedroom the other day and threw the clothes that were ‘tidily placed’ on it, on the ground so that she could slide down it’s arm with greater ease. I gave her a look- which she understands instantly, and she chirped back ‘don’t worry mamma, it’s all part of the plan’. I couldn’t knock it really! I just didn’t manage to convince her that the plan should also include her putting the clothes back on the chair after she had finished playing.

She has also been working on her fetish for making beds everywhere and having just a short ‘snooze’ before she gets up to go to work. In addition she likes to drink pretend wine like grown ups and make us all lattes and flat whites. In stark contrast however, when asked what she wants to be when she grows up, she is insistent on the fact that she just wants to be a little girl. Now that is something we like and encourage her to be for as long as she likes.

It is quite a bizarre thing how such a precious little dot can be so onto it in one moment and in the the next, because she is filled with so much excitement and urgency to get her point across- it comes out all wrong. She told me last night that she met Bob the Builder in Australia when she was born. This translates (I think) to a number of things. First, she is very proud of the fact that she was born. Knowing that her little brother was born not so long ago, there are many references and links at the moment to her having done things when she was born. Second, she quite likes Bob the Builder but has never met him and I don’t know if Bob the Builder has been to Australia. Third although Edie hasn’t been to Australia, the Wiggles are FROM Australia- and she has met the Wiggles (well, seen them live as opposed to on tv). I love the way all of this information spins around in her mind and sometimes works to come out just spot on, and other times although proffered up with such conviction, is hilariously mixed up.

Benj and I are so proud of Edie. She is such a caring big sis and although for the most part baby Ira only gets her undivided attention when Mum or Dad are tending to him, we often find little books or toys left for him in his cot. She is also expert in copying me by giving him the odd pat on the back if he’s in need of it and telling him everything is ok. Ira adores her, stares at her with such admiration and chuckles at anything she says or does.

Next goals for Ira are just to enjoy being a baby boy! His fingers have finally healed so no more bandages. We received good news on Friday. He has all the blood vessles and arteries needed to separate the last two middle fingers on each hand. So his next operation will be taking care of that, deepening the web space between his thumb and forefinger, and first round of toe separation if we reach consensus on that. His thumbs grow at right angles basically- so these will also have to be straightened later on. The next hand operation won't be until the end of the year or early next year- so, some welcome respite.

Next goals for Edie- let's see. Nothing but fun family and friends.

May 4, 2009

Springs and fevers

I'm so tired, haven't slept a wink
I'm so tired, my mind is on the blink
I wonder should I get up
And fix myself a drink – no, no, no, no

Ira had springs put into the back of his head a little over a week ago.

This is a good thing.

The springs are piece of tensile wire that when in place, keep the sutures in the back of his head from fusing too quickly. With Apert Syndrome the bony plates in the skull tend to grow together prematurely. This forces the brain - as it grows - to go wherever there is room, not necessarily where it should. In Ira's case, this is most places but back. The back of his head is flat, which in turn can cause difficulty for the flow of cranial fluid from the brain into the spinal canal. Pressure at the back of the brain can also mess with the optic nerves, causing blindness in the worst cases.

So, the springs will allow the brain to grow into the back of his head - make for a rounder swede and generally ease pressure upstairs. These are good things.

Unfortunately any trip to the hospital brings possible calamities. Having come out of his operation without problem, Ira came home for just a couple days before developing a fever. A suspected lung infection spiked his temperature to a high 39C (104F for our American peoples). Additional swelling around the head didn't help with our freak-out factor, so we were back in hospital for another week.

So why the John Winston Lennon lyric? You never rest
in hospital. I'm blessed that I can sleep through most any carnival, but when your little boy is fevered with springs in his nut, there is no rest - even if you do sleep some -the night Maria stayed she got about 2 hours.

after close observation and a clean CT scan, our neurosurgeon Wicks sent us home - folks that tinker with brains tend to favour caution.

So, we're all tired, but thankful to be home.

One bonus about surgeries is that every time Ira comes out he has learned a new trick. For several weeks we've been encouraging cognitive response to vocalese. Bah-bah-bah-bah constantly at feed time. In hospital he finally clicked and has has been saying "blah-blah-blah-blah".

I wonder, is he commenting, or just enjoying his new noise?

Next post will be all about Edie and the hijinx she's been up to while her little brother convalesces.