Friday, April 29, 2011

Song for our beautiful CDKL5 kiddies!

Hi Everyone,

I was browsing on the CDKL5 forum group & someone suggested an awesome song that she thought we should dedicate to our beautiful CDKL5 kiddies but would fit for any child with a disability and that very cool song is
Katy Perry;s "Firework". Ive always lived this song but never listened ot the lyrics, when I did I couldnt help but cry. Il post the link here of the slower version, i love it. Enjoy!

Happy very late New Year!!

Hi all,

Im sorry I havent posted on here for ages, time has got away on me with Jorja starting school in Feb & Honor having her gastrostomy fitted (finally). Things are going good at the moment. Honor had a NG tube in last December & 3weeks ago had her G-tube fitted along with Nissen Fundiplication (reflux fixed). We had a bit of strife with g-tube as the day after surgery it came out due to a faulty balloon, which would only happen to us.
All was going well then she contracted thrush around the g-tube site, after fungal cream & oral drops we are now on the right track.
Jorja is loving school & doing very well but is still very tired after school. Easter was great & we are just at the end of our 2week stint of the school holidays. I really enjoy the holidays.
Honor has finished preschool & starts Afternoon kindy this term for 2hours 3 afternoons a week. Thats all for now, hope everyone is well, keep warm winter is definatly here!
All my love Kelly

Friday, September 3, 2010

Honors new bed

Today Honor got her "Big girls bed". What a mission it was to get it in the house, luckily she has a sliding door to the back yard otherwise we wouldnt have got it inside.
It is an electric bed with a gel mattress & has pull up mesh cot sides. Hopefully it will make life a bit easier for us & Miss Honor, she looks so little in it but comfy. My back will love it too!

Wednesday, September 1, 2010

Honor turns 2!

MMM Cake!

Opening pressie with Great Nana & Big Sister Jorja!
Honor turns 2!

My special big Sis helping me with a present!

Our Family!

Tuesday, August 31, 2010

Hi all,

Welcome to Miss Honors blog, We are all new to this kind of thing but want to get our story out there to other CDKL5 sufferers & families.

Honor Has just recently been diagnosed with gene disorder CDKL5 after a very long battle with Infantile Spasms since she was a few weeks old. It has been a very long road with all sorts of tests & medications that just havent worked.
Honor is the only diagnosed case of CDKL5 in New Zealand, she also has development delay, Meaning at 2years old she can sit & move around the floor but not crawl or use her hands to play or feed herself.
She cannot walk or talk & is slowly starting to focus for short periods. She has also just started smiling.
Honor has an older sister who is 4 years old & does not have CDKL5 or any other problems, she absolutly adores Honor & cannot do enough for her.

I look forward to you following us along with Honor & her journey through life.