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!