Miss Honors Journey

Song for our beautiful CDKL5 kiddies!

2011-04-29T16:06:00.000+12:00

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!

Firework - Katy Perry (Boyce Avenue cover ft. David Choi on strings) on iTunes

http://www.youtube.com/

Happy very late New Year!!

2011-04-29T15:58:00.000+12:00

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

Honors new bed

2010-09-03T20:52:00.000+12:00

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!

Honor turns 2!

2010-09-01T20:50:00.000+12:00

MMM Cake!

Opening pressie with Great Nana & Big Sister Jorja!

Honor turns 2!

My special big Sis helping me with a present!

Our Family!

2010-08-31T16:12:00.000+12:00

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.