Our Family

Our Family

Friday, 27 September 2013

Happy First Birthday.

The last few weeks have been pretty hectic for us. Robyn's birthday came and went. She had a wonderful Day with a great party, with lots of friends and family around her. She did of course choose to sleep through a large portion of it but I am assured that both she and Tyler had an amazing time.

We had a very loose Monsters Inc theme to remind us of how 'monstrous' her first year was at times. But the focus was very much on how far she has come and how well she is doing. She may be very behind in some of her development but she has been through way more than most babies her age and also more than a lot of adults we know too. She is one very strong little girl and we are so proud of her.

No pony for Robyn. It's a sad Robyn
 
 
                      

The poster we put up for those who had only recently met Robyn and hadn't really seen what she had been through up till that point. And Robyn in her gorgeous dress all ready for her party.

Tyler playing in the softplay that came as part of the hall hire for the party

The birthday cake.
 
                                          And a Selfie of Tyler as he was feeling left out lol
 

Tuesday, 3 September 2013

Our Year in Review

Well, where do I start? This time last year I was a beached whale (I really was the excess fluid made me HUGE). I had just been to my nephews birthday and was exhausted and planning an early night as we had yet another scan to check on Robyn before birth. I was expecting to be given my induction date at the scan which was to be about a week later.

Robyn of course had other ideas.

The numerical facts of the last year are pretty scary.

Robyn has been in 2 Hospitals. Had 4 sets of ambulance transfers between them including one in an Emergency Helicopter. And 1 very scary emergency trip in an ambulance from home to hospital with Mum. She has been under GA four times for operations. At 3 days, 8 days, 17 days, and 59 days. She has spent 18 days in Paediatric Intensive Care as well as 8 days in Neonatal Intensive Care. She had stents in her nose for 6 weeks.

Robyn spent 150 days (roughly 5 months) in hospitals in total. And 215 days (roughly 7 months) home.

During that time at home Robyn has had 65 appointments to see various members of her team and this number does not include appointments that were cancelled during hospital stays or that took place on the wards during hospital stays.

With all of this I would say Robyn has easily spent more than half her life so far in hospitals.


However we are looking forward to a much more home based 2nd year. I am very excited about Robyn's birthday for many reasons. Not least of which is the fact that her mortality risk decreases significantly after the age of one. The risk of death for children with CHARGE in the first year is very high and increases with each use of GA but after that first year most of the life threatening events are overcome and life expectancy increases greatly. I cannot imagine how hard it must be to lose a child, and am grateful everyday our girl survived.

We wanted her birthday to be a happy event and it is but it is also an end to the year I was told my baby had a 1 in 25 chance of surviving surgery. And that just makes me feel relieved. I am hoping by looking back over these points today I can completely focus on the future tomorrow and not spend too much time going over bad memories.

We have a party planned and will update with pictures soon