Back to School, Back to Work

The past couple of weeks have been busy!

It’s been hard getting back into the normal routines of work, daycare, chores and hospital appointments after the Christmas New Year break. The weather hasn’t helped, but at last we're starting to get some sun. Ira has been a happy little camper although he certainly lets you know his frustration when left alone while you try to get a quick chore done. He's still getting around the house with his commando crawl, but is up on his feet a lot now, holding on to any objects within reach. I think I will fall off my chair with excitement and pride when he takes his first unaided step. Speaking of mile-stones, he has finally sprung his first tooth at the age of 17 months. It’s just through the surface, but a long time in the waiting! I was literally whoop whooping when I saw it. Poor Benj was away on a fishing trip so missed out on the excitement, but I’m sure was pretty excited anyway by virtue of being kid (and wife!?) free for 4 days on a chartered boat with 10 of his friends.

Other good news, surgery to separate the rest of his fingers has been booked for 11 February. Don’t get much notice, but the sooner the better! Not so good, or at least worrying his mamma no-end was his recent routine eye check up. Our opthamologist noted his optic nerves looked raised or swollen which could indicate inter-cranial pressure. We were called in for a CT scan the next day which came back normal, but this still doesn’t explain the raised optic nerves. My worry, from what I have learned (thanks to the amazing List-Serve created by Don and Cathie Sears) is that it could suggest a blockage in the third ventricle of the brain. This doesn’t show up on CT’s and sometimes not on MRI’s, so of course we’re eager to follow this up. If left unchecked it could lead to partial or significant vision loss. Will keep you in touch on that one.

Edie gave me my first unsolicited I love you hug yesterday – was pretty pleased with that. She’s into role-playing at the moment, she likes to be ‘Amanda or Louise’ and pretend Benj & I are our friends Clay & Bex and their boy Roman is Ira. Hell of an imangination. She is still a very caring and doting big sister (most of the time) and her little unprovoked gestures of affection towards Ira, Lily and Nero always raise a smile and get us a little misty. Grandma and Grandpa Berryman have been having the kids over a lot- which is great to let us get things done when we have to. Edie is very spoilt, as it is fair to say I am not the cook of the house, she delights in baking with Grandma when she goes there. Gael and Poppa Austen are missed but hopefully we’ll see them again soon.

As I mentioned, Benj went on a fishing trip with the 'boys' which made me truely appreciate the privilege of being blessed with a loving and supportive husband. I have huge appreciation for mums (or Dads) who are raising children on their own. It was a pretty full on time with no Dad around to help and I was very relieved to have a tired (but sporting fish and scallops) husband back home. The high-light of the long weekend was getting to spend more one-on-one time with my little boy. He thrives on more attention and unfortunately it does make me think how much better it would be for him if I was home more. If only we could win the lottery. Hopefully next post will report on successful surgery and I'll update on my girls-day-out to the Fashion Tent at the races for Wellington Cup Day.

Maria

Happy Merry One & All

Celestial Seasonings at the top n' tail of 'Twenty-ten' and 'Oh-9' respectively.

Our first vacation since San Diego in 2008 has found us in sunny Tauranga, Bay of Plenty - plenty indeed. Plenty of sunshine, plenty of food, plenty of nothing to do - unless we choose to do it.

Maria's folks Ray (Poppa) & Gael moved to Tauranga earlier this year and we haven't seen the new house until now. It's been a great getaway from home, work and chores. So far we've walked around Mt Maunganui with the kids, spent the day at Papamoa beach with Maria's aunties, had a flurry on the pony's at the TAB with the uncles over a jug, and eaten a bunch of lunches - not to mention our first Christmas with Gael & Poppa in a few years.


Ham, roast chicken - with Ray's stuffing, cured venison, beau coup roast veges, we haven't stopped eating since the 25th. Gael & Poppa's place looks out over Welcome Bay across the estuary towards the Mount with the Pacific in the far distance. As Edie has just mentioned "Summer if just perfectly coming towards us" and she's got it in one. The sun has been magnificent and I gather a perfect respite from the wind and general dour behaviour of Wellington (except on a good day - read: twice a year).

Christmas was bountiful for Edie and Ira alike. Plenty of gifts and things to keep them occupado amongst the day trips. I'm taking Ray fishing on Tuesday, we're both really looking forward to it. Hopefully it will be fish-this and fish-that on the menu for a few days. I'll be sure to post photos of our triumphs in a week or so.

Not much else to report. Been doing the family thing with most of Maria's aunties, uncles, cousins et al. Uncle Mike's avocado trees will keep us in guacamole for a good spell.


Anyhoo, time to get back to the business

Happy Merry
Benj

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.

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.

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: http://www.theskeesfamily.com/ . 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!

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.

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 shower...you 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.