Ruby-Leigh's gorgeous quilt came today ready for when she got home from school. It's safe to say she loves it and so do I! Thank you so much to all of you, not just the people that made her quilt but everyone for all the beautiful hard work you put into making our children smile, you are all such amazing people. Ruby-Leigh has gone to bed a very lucky happy little girl xxxx
Ruby-Leigh was born in January 2010, 7 minutes after her twin brother Thomas, she weighed a healthy 5lb 11oz, but when we got home we started to realise she wasn't feeding as well as Thomas. we grew concerned and a health visitor weighed her, her weight had dramatically dropped to 4lb 15oz, Ruby-Leigh was admitted to hospital and I had to keep a record of how much milk she was drinking. She had countless examinations and blood tests, finally a doctor picked up on a squeaky noise she made while she was crying, we was eventually told that she had a floppy larynx, a flap of skin in her throat that was preventing her taking down as much milk as she should have been. at 4 months old Ruby-Leigh had an operation to cut away that flap of skin. the operation was a success and soon after she started feeding well but was put on infatrini baby milk full of calories until she was 1 to help her gain weight. she did gain weight and things got better until.....
When Ruby-Leigh was a year and a half we noticed she was getting a lot of headaches, mainly at the back. We took her to the GP who sent her of for MRI scans, when she was about 4 we got the results back from the scans, she has Arnold chiari malformation type 1, it basically means that her brain is too big for her skull and is being pushed down her spinal cord and she had a massive build up of fluid on her spine causing severe headaches, dizziness and nausea, we was told that she would need surgery but the doctors didn't want to risk doing it just yet because she's small for her age and its a very big operation. however when she turned 5 the symptoms grew worse, she couldn't walk more than 3 minutes up the road without being in agony so had to be pushed in a pushchair or carried everywhere, she started to complain of pain in her hands and arms due to the pressure on her spine and suffered with insomnia, so we pushed for her to have the operation sooner. on July 20th she had the operation, it went well. we was told that she would be in the high dependency unit for 5 days after her operation and then onto the ward and would probably be allowed home on the 3rd of august, Ruby-Leigh came out of the HDU and onto the ward the afternoon after her operation, she was then discharged from hospital on the 23rd, even the doctors were amazed at how she had bounced back and kept telling us that they had never seen anything like it, words could not describe how proud we were of her.
We are now waiting for an appointment for yet another MRI scan to see how she is doing. however poor Ruby-Leigh is now suffering again due to the colder weather. if she walks too far or too fast she gets pain, if she sneezes or coughs she gets pain, even if she laughs too much she gets a pain so there is an 85% chance that she will need the operation again.