Tuesday, November 16, 2010

Annika's Learning Story

Here is another of Ira's learning stories about his exploration at City Kids. It is great to see him getting around so easily!

Here is a video I took of Ira on my first day back. It took him a while to figure out how to blow hard enough to make the water bubble up, but once he was away he had a ball. Every time ran out of breath he would stop and smile and wait for me to clap. He stuck at it for ages!

Monday, November 8, 2010

Ira and the brooms

I have just written a story about Iras brooms. The pictures pretty much tell you what he has been up to. Looking back at older posts I can see how Ira has just come along so far. The brooms certainly add a challenge for how Ira can walk and move, and he takes this on with such determination. The length and weight of broom (the outside one is not easy to move) doesn't put him off. He has been doing for so long now that it has just become something that he 'does', so I thought I better record it.

Tuesday, October 12, 2010

Heres another video I took today of Ira in the sandpit. I noticed he uses the spade in the same way he uses the broom. It was great to see him spend some time in the sandpit as he hasn't really explored it up till now! You can hear another child nearby - showing off the great way the other children like to spend time with him!

Ira up and about

Here is some video of Ira up and about at City Kids. It is great to see him so stable and moving around so easily!! He finds ways and means of getting around and getting to whatever he wants to get to. Alex commented on how far he has come in the two weeks since she has been away. Its great to hear as sometimes you don't always notice all the changes when you see him on a daily basis.

Sunday, October 10, 2010

Rowan in the UK

Hi there

Just to let everyone know I am heading to the UK for 4 weeks from the 18th of October to the 14th of November. Katy will be filling in for me as Ira's family group teacher and will be the contact person for Alex and any other vistors. I will try and keep in contact with the blog, and see how he is going!

Will miss him heaps
Rowan :)

Monday, September 20, 2010

Ira is determined to walk down the steps. Here I am giving him a hand. He is getting more steady and much faster on his feet.

Thursday, September 16, 2010

Ira's first 3 weeks (Rowan)

Here are some older photos of Ira durning his first two weeks here at City Kids. Looking back at these it is easy to see how far Ira has come in a very short amount of time. He is much more willing to walk rather than crawl and needs much less physical support to get around outside. All I can say is GO IRA !!!

Wednesday, September 15, 2010

Ira steps up

Ira has been really pushing himself today - Firstly he managed to step down from the french doors to the deck, with me holding his hand for balance. He really had to think about which foot to put first, but worked it our for himself. Later he stepped back up, using the bar on the french doors to hold on to for support (see video) no need for crawling down backwards now! We have also discovered that Ira can climb onto our tables without any support at all!!!!

Open letter to all professionals

Although we think we are extremely lucky with the therapists, doctors and specialists we get to work with to support Ira – this article touched us and explains simply and eloquently some of our experiences.


Monday, September 13, 2010

Up and Down

I have been meaning to put this story on for ages..... have finally found email with log ins. Did you want us to all log in under the same log in or would you prefer to have separate ones so you can see who has posted which info? I will talk with the other teachers about uploading their stories about Ira onto the blog, so most stories in his profile book should also be on the blog.

Wednesday, September 1, 2010

Ira is 2! First days at Citykids!

Well, Ira has now started his days at Citykids!

He is loving it.

He has a terrific family group teacher, Rowan, who he keeps on her toes, as most of the day (come rain or shine) I'm sure he would rather be in the outdoor area,  He makes a bee line for it as soon as he arrives.
Ira has only just started walking, so the jungle-gym and other climbing things scare us witless but are his favourite places to be.  He just wants to climb onto, over, through everything.

He's well known at CK through having dropped his big sis there for the past year - and the kids love him and the centre has been so encouraging and helpful.  We are very lucky to have such a wonderful place for him to play, grow and learn in over the next couple of years. 

We had Ira's eyes checked at the hospital to monitor the optic nerve swelling following his last surgery and the one fleeting glance that the Registrar got, appeared to confirm he no longer had pailoedema .
I'm not sure how accurate or concrete that is- as he couldn't check the other one, but we're in their hands.

Ira is now 87cm tall which is somewhere between the 50th and 75th percentile and 13.15kgs which is the 75th percentile.

We are really excited Ira has started at Daycare.. watch this space!

Monday, July 19, 2010

Well hello there!

Ira is two years old and has just started at City Kids to the delight (or maybe chagrin?) of his big sister Edie.

Ira was born with a very rare cranial facial syndrome called Apert Syndrome which affects the way certain bones grow.  Apert Syndrome occurs in approximately 1 in 150,000 births and in New Zealand there are about six children we know of who also have it. It is caused by a random chromosomal misfire early on in pregnancy. Without getting technical, too much protein is sent out which fuses certain bones, especially in the head and hands.

The syndrome should not affect Ira’s intellectual development, aside from the natural setbacks he has experienced when recovering from corrective surgeries. These setbacks have slowed his development, but in most cases this is quite normal and at around two years of age, Aperts kids tend to catch up rapidly with their peers. We are noticing this is the case with Ira.

In brief, the fingers and toes in Apert Syndrome are fused and the head grows differently due to some of the sutures being prematurely fused.   

To date, Ira has had about 15 surgeries. Some minor like widening his nasal passages when he was first born to help him breathe, others major including creating fingers from his fused mitten hands and remodelling his head- more than once. Ira’s mid-face is also set back and only grows at about a third of the rate of the lower and upper face. All of this is corrected over time, probably when he's about six or seven.
He's had to spend more time in the children’s ward at Wellington Hospital than a little guy should. However, through it all he has taken it all in his stride and is a curious and otherwise happy chappy.

As his parents, we encourage questions from other children and parents, and believe that the more people know about his ‘differences’ the better. To those who know him and us, he is just a regular little boy who enjoys the same things as the next kid, but we acknowledge that people may take a second look when they see Ira for the first time – it’s human after all.

An article written by a mum that summarises Apert Syndrome simply and discusses the ups & downs of life looking a bit different is well worth a read:

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

We're excited about Ira starting at CityKids as we feel he'll really benefit from the social interaction he'll get being around other kids each day. There will be Early Education Teachers coming each day to work with Amanda and Rowan on Ira's ongoing development.