April Already!

It has been too long since we posted!  We are so busy with daycare/ prep for school/work and general day to day that we rarely grab the opportunity to update this site!

Ira has another blog that his amazing daycare centre contribute to - so we tend to focus more on that one.

Ira's progress at daycare is advancing in leaps and bounds, due we think, to having had the first decent break in his 2 and a half years (crikey is that all) from surgery and hospital time.  The days and nights in the Childrens' ward at Wellington Hospital seem well behind us- which I should probably not say too frequently for fear of jiinxing things.

All in all we are a happy but busy and tired lot! Life just doesn't seem to slow down, but we certainly have nothing to complain about with a little boy who lights up each day with tricks and laughter and a little girl who is very serious about getting big!  Big year for Edie- she starts school in July and gets to go to Disney Land when we travel to the States at Christmas.

No surgeries on the immediate horizon for Ira- he has his all important eye check in May next month to try and get a good look at what his optic nerves are doing.

We are eternally grateful for his amazing surgeons work in keeping any pressure at bay.

A long time between drinks

 

It’s been a very long time since we posted.

As with any household, birthday parties, social engagements, work commitments, coughs, colds and chicken pox have come and gone.  We are really looking forward to the rest over the Christmas close-down and for the time to reflect on what we’ve accomplished this year and what the objectives are for the next 12- 18 months.

Ira has come a long long way in the last 4 months.

He finally started walking at the age of 2.  We were so proud and excited.  It seems to have helped significantly with development in all other areas- babble, words, play, cheekiness, stubbornness, determination, strength, determination, did I mention stubbornness?

He is such a strong little chap – and I’m thankful that 4yr old sis Edie- who he is now the same size as but heavier than- has not yet had a real donk.  He loves nothing more than cuddles with her, but still prefers to run up to her (and others) throwing his arms and full weight around whatever section of the body he lands on.  For Edie it is typically around the neck and head.  She is very tolerant (most times).

He is also madly in love with cars and handbags.  Nicely balanced?  His preferred mode of transport be it walking around the house, driving down to daycare with Edie, or going out in the buggy, is always to have a bag slung over his shoulder.

We’ve been trying to teach him ‘We wish you a Merry Christmas’ but so far he only does the ‘Ho Ho Ho’ on the end and confuses it with an E I E I O in the middle.  He’s pretty fond of Mr Old McDonald.

On the surgical list over the last 6 months was the removal of the springs that had been placed in his head again to pull any pressure back from his optic nerves.

They came out in November – and the news has been great:

·         Optic Nerves look better

·         ABR Hearing Test showed normal hearing- (hooray)

·         Eye sight good – no need for glasses currently but potentially surgery to tighten muscles at  some point (when he looks up his eyes track in a V shape)

·         Brain/Ventricles all looking good


So.. Christmas really did come early for us – when we look at what Ira has accomplished in such a short space of time we have to remind ourselves how far he’s come.  He now has a generous sprinkling of words although not using them together yet.  He can count to 10 – but only the even numbers! It is very very cute to hear though.

Edie is testing us at times at the moment.  At 4.5  she seems to be straddling  stroppy insolent teenager and reverting to infant tactics to make her point.  We are conscious that she’s been a bit run down with colds and latterly chicken pocks, but my resolve gave way the other morning after refusal of  5th outfit choice (that wasn’t togs, pink, or frilly skirt) and I caught myself telling her that I was going to sell her to the highest bidder.  Apparently in her world, everything is about choice.  And it’s her dinner so she will choose whether to eat it.  I think she’s interpreted a ‘teaching and development strand’ that may be currently being promulgated at her daycare centre- very liberally.   She insists she is entitled to choose when it is time to listen to her mother or father who are telling her it’s bed time.  The flip side however, is that when we tell her, she doesn’t rule the world (in nicer terms of course)  she accuses us of not ‘listening’ to her.  It’s been fun!  She really is a lovely natured child- I’d just like more of the sweet compliant easy going girl back please.

We are planning a wonderful Christmas Day at our place - with about 15 max.  Gael and Poppa are coming too which is very exciting.  The plan for next Christmas is Texas – so we’ll make the most of the kiwi traditions this year.
Will post Christmas pics next time

In the meantime, we wish everyone a safe healthy and stress free Christmas and New Year.

Mother's Day mumbo jumbo

I haven't been contributing much since starting the new job at ad firm DraftFCB. Advertising Agency of the Year thank you very much. I'd like to say I had something to do with that, but no. Readjusting to working hasn't been too trying, although dinners haven't been very elaborate around the compound lately. Occasionally I have flashes of supreme organisation and get something special prep'd before leaving the house. Fortunately with the tropical balmy weather we're still enjoying here in Beautiful Wellington the bbq grill is still getting a workout.

Maria is having a much deserved Mother's Day sleep-in, so guess I should update ch'all on the haps in the hat. I'll try to be brief, a good post's a short one.

We've brought Ira home from three days in the shop after 48 hours of inter-cranial pressure monitoring. It's confirmed that he's got raised pressure in his swede. The good news is that the problem is not internal. By that I mean it has nothing to do with flow of spinal fluid, blockages in ventricles or even amount of space (to a certain degree). Bad news is that it is respiratory. When Ira is going about his day, he doesn't breathe naturally – easily. To a lesser degree he's like a weightlifter about to squat 300lbs. He kind of holds his breath and heaves as he exerts himself. You don't think about it as he reaches over to pick up a toy, but this heaving is putting constant pressure on his brain.


So, good news is that he doesn't need a shunt which we were hoping to avoid. Bad news is that within the next three months we're going to be back in for some kind of major cranial operation again – we thought we were done with the hospital for a few years. Still, got to deal with this now, can't let the little guy wander around with a constant sneeze going on in his dome 24/7.

Edie is practicing to become a ballerina, or a hip-hopper, or a Kapa haka performer. Grandma recently taught her to write her name, she gets it right most of the time. Her favourite activity of the moment is writing cards for people. She writes them at daycare and comes home and writes more with our nanny Katalin. I come home from work each day to a beautiful signed greeting card. What a perfect end to a working day.



To wrap it up, Nero is catching beau coup mice and bringing them in as gifts or trophies – don't know which – thanks mate. Lily is currently the chopped-liver of the family. Sadly even Barry Goldfish is getting more attention than the whippet. That said, as long as she has a soft couch or bed to curl up to she's happy.

Maria is still frustrated with my ongoing fascination with the music of Ben Folds. It's my 40th soon; I think I'll enjoy a Ben Folds Five omnibus. My theory is Maria will come to like angry indie piano thrash if she's exposed to it enough. So far she's resisted. Of course I've managed my addiction to Doonesbury, so maybe Ben will just be retired from the play list soon, who knows.

Okay, this is not a brief post, I better turn off BFF before Maria wakes up and get her eggs ready.

Happy Mother's Day mums one and all.

PS: It's feijoa season, so I've been making chutney. Easy as:

1.5 kg feijoas
1 kg onions
1/2 cup crystallised ginger
2 cups sultanas
1 cup dates, chopped
2 cups brown sugar
1 teaspoon ground cloves
3 teaspoons curry powder
2 tablespoons salt
750 ml malt vinegar

Method
1. Top and tail the feijoas and slice into desired chunks. Slice onions and chop the ginger finely. Combine all ingredients in a large pan and bring to the boil uncovered, stirring occasionally. Simmer low until thick (about 5 hours), then spoon into sterilized jars. Screw lids on loosely and put in and medium oven on a roasting try for 10-15 mins. Remove from oven and tighten lids, allow to cool, jars will seal tight.

Recipe adapted from "A New Zealand Country Harvest Cookbook" by Gilian Painter.

Jack

This article written by Marie - mum to a little boy called Jack who is 4 with Apert Syndrome- is amazing.
It describes with such sincerity and accuracy, how we feel and what we experience with our little guy.

Please take the time to read it. It is insightful, educational, and moving. It is also provides a wee glimpse of what life for these little ones and their families and friends can be like.

I am in awe of Marie for capturing in words, what is often so difficult to comprehend, let alone repeat.

http://www.nfb.org/images/nfb/Publications/fr/fr29/2/fr290210.htm

Autumn leaves

Family life has been moving swiftly along at a pace akin to what some days feels like a long distance endurance event. The pace must continue at a relatively fast clip, however, along the way there are rivers to cross, hills to climb and skate down the other side of, gaps to bridge and all this whilst carrying out two full-time jobs, a raft of therapist appointments, parent teacher interviews (at the tender age of three and three-quarters) and the niggling issue of continued question marks around Ira’s raised optic nerves.


To cover that one off first, the recent update is: after being called into a meeting with Ira’s Cranial Facial and Neurosurgeons, the query remains as to what is causing his nerves to appear so raised. The understanding from neuro is that all his MRIs look fine and we ourselves got to look at the images- his surgeons are happy with the space around his brain and that everything appears as it should. The concern for them therefore, is why his optic nerves are raised (which would indicate there is pressure on the nerves themselves). He does have mild Papilledema which in simpler terms means the nerves appear raised and the edges themselves are not clearly defined. Whilst Ira’s edges are not significantly fuzzy, they are a little blurry and that coupled with the fact that they appear to come forward at you whilst looking through the eye, is enough for a diagnosis of mild Papilledema.

Accordingly, what our Neurosurgeon has suggested is that he inserts (for the second time in Ira’s life) a probe into his head to measure the level of ICP (intracranial pressure). This will have to stay in for at least 48 hours if not 72, in order to give a good reading of the level of pressure inside his head. There is an ideal range of numbers that we are hoping to see and this sits between 5 or 7 to about 15 or 19 max. It was explained however, that if you were to sneeze, the level would shoot up to around the 60 mark. This is why we have to leave the probe in for as long as possible to get a really good average reading.

This means another surgery and general anaesthetic of course, although we hope that it is not too intrusive when compared to what Ira has been through to date.

We are bit concerned about how to keep him occupied for three or four days in hospital with this probe in his head and that he doesn’t yank it out! I think, he can move around, as there is no way we would be able to keep him in bed (when not actually sick) for three days.

Once we get a reading on this, his surgeons will then at least know and have a proper gauge on the actual pressure inside his head. It will then be time to discuss next steps. He has not yet had his sleep study but they consider that the probe monitor is more important at this stage. It could be that he is struggling more than he should with air -which could also be increasing the pressure in his head and behind his eyes.

So enough about the yucky stuff, aside from the concern this is causing to the parents, Ira has been making huge progress and we can tell that he is now developing and learning at a steady rate. One issue I have been quite concerned about is the fact that he still hasn’t walked on his own at 20 months. He has had some longer setbacks than other kids in terms of the time that it has taken him to get over his surgeries and syndactyly releases, however, I wonder about this delay being potentially linked to anything go on in his head. Hopefully he will prove us all wrong and start walking very shortly.


Edie started dance classes this Saturday with her friend Jemima and has not stopped talking about it since yesterday. The first thing she asked this morning was whether or not it was dance class today. It is hilarious to watch a group of 8 or 9 three and four year olds in pink tutus all seriously committed to the lesson. It is without doubt one of the most fun things I have done in a while.

We have some birthdays coming up. Edie’s in June, Benj’s 40th in July and Ira’s 2nd birthday in August. These will be busy months particularly planning the 40th! Ira’s 2nd birthday I feel, should be marked with a degree of over-the-topness to celebrate this little boy’s unfailing tolerance of people poking and prodding him at the expense of just being left to be a little boy. I feel like throwing him a party which includes elephants, clowns, pirate cats and candy floss. (Perhaps this is just what the parents feel they deserve!). Maybe 2 is a bit young to appreciate this level of commitment!

With being so busy at work, life is indeed set at a cracking pace for us all, but we wouldn’t have it any other way. We are lucky to have four therapists who call on Ira either weekly or fortnightly-they include an OT, a PT, a Neuro Development Therapist and a Speech and Language Therapist. I’ve said it before, but we are also unbelievably blessed with a beautiful big family to help and share the load. Grandma and Grandpa Berryman live and breathe the ups n downs, Uncle Stephen and Aunty Sarah help in infinite ways and Gael and Poppa are on the other end of the phone encouraging and lightening the load. Ira also has an amazing nanny for 3 days a week who loves him to bits.


Right, time to get back to the race, we’ll update with news on the ICP levels in a couple of weeks after we get through the three or four day ordeal.

One final note, I’m dictating this at work on ANZAC day (having naughtily fled the family for a couple of hours to make a head start on the week’s work). I was saddened to hear about a helicopter crash which has killed three people. The helicopter was on its way to do a fly over in Wellington at the Dawn Service to commemorate our Allied forces commitment at Gallipoli. Although, personally, I do not have strong connection to any World War veterans, as I heard this on the news, I couldn’t help but feel the tight knot in my throat and my eyes begin to mist over. The tragedy itself so very sad and the thought of the sheer number of young men killed so many years ago leaving behind partners, children, parents, futures – all in the name of duty. There is of course a huge honour bestowed upon these thousands of men (and their families) but the fact remains that their deaths were far too soon and the lives lost, such a crying shame. Our thoughts and prayers are with these people and their loved ones on this day.

I love my Dad

Ira is doing pretty well all things considered.
He seems to get around ok- but is pretty keen to be up on his feet all the time now, but can't master the balance with heavy casts.

One week and one day they've been on- not that we're counting.

Edie is happy

Benj is very happy- he's leaving his apron behind and going back to work full time. We are extremely lucky to have amazing grandparents living close by and a wonderful nanny.

Write more soon.

Blessings

Just a quick sprinkling of some recent pics. You'll see Ira's fingers on the swing which won't look the same after surgery next week. Feel surprisingly perplexed about changing his precious body now.

Finally Wellington is gracing us with some summer weather! Just as well as we are hosting the sevens (rugby) this weekend and it is Waitangi day which usually gets you out n about for a trip to the beach, picnic or bbq. We are paying homage to the States (again Benj) by doing hamburgers and hotdogs on the grill this evening.

The Races were fab, great long day in the sun with too much bubbles- oh dear, Sunday was even longer.

On a sentimental note - at the park this morning with Edie and Ira having a swing, I had one of those moments in which it was hard for me to believe what a gorgeous family I have. I am so lucky to have two strong determined and beautiful children and a husband who I adore. On top of that I have amazing friends and work colleagues. I need to count my blessings more often.