Kyla's love quilt got redelivered today and I don't think we could possibly love it anymore ❤
We've been so excited for months to receive this and I can definitely say that it was worth every second and more of waiting 😍
I helped Kyla open it and her first response was 'wow' which is incredible in itself as she's pretty much non verbal part from a few words! She lay on it and couldn't keep still due to the excitement 😆
She loved hiding under it for a picture but she's finding it hard to sit up today as she's tired 😴
Kyla had an orthotic appointment today and where we live we've got 90mph winds so it's bloody freezing so I wrapped Kyla in her love quilt in her wheelchair. When we got to the appointment people didn't stop saying how lovely it was and who made it for her! 🤗
We are home now and Kyla's sister Liv is asking where hers is lol 🙈
Thank you from the bottom of her hearts for this wonderful gift for Kyla , words will never be able to explain how greatful we are and how nice it is to have people put there who are strangers to us but give up their own time to do something good for someone else , we don't get much acceptance in this world so everything we get means the world to us ❤
Thank you so much to everyone involved ...
Love Rebecca , Mark , Kyla B and family xxxxx
Four months before Kyla was due to be born we were told at a routine scan that she was 50% smaller than she should be and that there was severe abnormalities to her heart and brain. We were told that our baby had no chance of survival at birth and that we should abort. Of course we chose not to listen and Kyla was born 11 weeks early. She was whisked right away from us and we didn't see her again until 2 hours later, by this point we expected her to be dead. She wasn't, she fought on.
At 3 months old Kyla was transferred to Great Ormond Street Hospital as our local team said they didn't know what to do with her.
At 6 months old Kyla was diagnosed with severe life threatening epilepsy and was having 150+ seizures a day. Kyla had fluid on her brain which needed draining and a hole in her heart that needed fixing.
At 1 year old Kyla was still in hospital and had now also been diagnosed with severe infantile cystic fibrosis.
At 15 months old we brought Kyla home for the first time, she was on oxygen during the day and ventilation at night. She only spent 2 months at home and then was back in hospital on intensive care where she sent 47 days on a ventilator.
In December 2014, Kyla suffered from encephalitis (swelling on her brain) she was rushed to our local hospital when she was later transferred to Great Ormond Street. Kyla was on a ventilator and we were told she had just a few days left. She wasn't responding to any meds. On Christmas Eve, everything changed for the better with Kyla's condition. She started to respond to the treatment and was breathing for herself again! It was a miracle.
The encephalitis left Kyla with severe brain damage and cerebral palsy meaning she couldn't walk, talk, eat, sit up or be independent in any way.
Kyla is now 4 1/2. In December last year Kyla's epilepsy spiralled out of control and she was having 300+ violent seizures a day.
In February 2016, Kyla had brain surgery to remove the third of her brain that was causing the seizures. This was a successful operation and 28 weeks on she is doing really well on the seizure front. She has learnt lots of skills that the seizures stole from her including sitting up, saying a few words and weight bearing. During the recovery process of brain surgery Kyla's Cystic Fibrosis hit a bad stage. She had been on the transplant list since she was 2 years old and now she was requiring the transplant more than ever. On 4th June 2014 we got the call for new lungs for Kyla and later that day she had her transplant making her one of the youngest children to ever have a double lung transplant.
Twelve weeks on from that, Kyla is doing amazingly well and is now able to breathe for herself for the first time in forever. The doctors are so amazed and pleased with her recovery. Still got a long long way to go but we will get there!
Kyla's current prognosis is 10 years old as despite the fact she now a lot healthier than she was her organs are still extremely deformed and her heart , kidneys and liver all have some degree of failure and it is unlikely they will be able to work well enough to keep Kyla alive past 10 years of age.
We live in the moment in our house. Kyla is one of 8 children, she is little sister to 2 big sisters Kia and Olivia and she is big sister to Mel, Archie, Jason, Elena and Corey.
We take every second we have with Kyla as a blessing as she is alive when we expected her to have died and that means the world to us!
She is our warrior princess and we adore her.