Update: 15th April 2018 - 3 weeks post op. 

I went into surgery as planned, a few hurdles to conquer before I went in following some problems that arose in my pre-op assessment with my heart. Finally got the all clear from a cardiologist with just 2 days to spare.

Plan was to do the furlowplasty or Z cut to lengthen my palate with the possibility of doing a Buccinator flap if required. 3 hours later I came round, and it was confirmed I had the buccinator flap due to extensive scar tissue already there. I stayed 1 night in hospital and the recovery commenced. The pain was unreal, eating/drinking was a major issue. I was asked if I knew how bad the pain was would I have gone through with the surgery? The answer was yes. Knowing what the outcome will be, then yes.  The medication helped. Knocked me out most of the time, I've slept loads. Each day got easier, but pain was still a problem. Swellings were up and down, had some sleepless nights and weight loss. Having asked for the flap to be cut due to my weight loss, the cleft team agreed to see me earlier than the proposed 7 weeks. It transpired that the swelling and pain I was still experiencing was due to the fact I was gnawing the flap in my sleep and cutting it off. Ouch. Looking back at pictures I Can see the damage. The cleft team have asked me to wait a further 2 weeks to ensure a sufficient blood supply...... my chewing wasn't helping. Plus I had to have spacers put in to stop me biting so on another liquid diet. The plan is to cut and stitch the remaining flap on 24th April. Hoping this will be the beginning of the recovery process.

During my recovery I met a girl on the clapa facebook page who has been through the same procedure, it's been great talking to someone who knows what you're going through.

I'm so looking forward to having the biggest steak dinner!

Update: 26th February 2018

I have been called today by the Team at the QE to say I've been allocated a bed and my operation is scheduled for 22nd March (a little over 3 weeks!); never been so quiet! I was shocked, nervous but very excited.
So plans have been put in place at work to get things sorted before I go, and whilst my daughter is away on her trip with school I'm going shopping for Pj's and overnight bag.
Just shy of a week my operation is being re-done 38 years to the day. My original op was 31st March 1980. In 5 short months I have gone from 1 referral to see if I can get any help with my moving teeth to having a full set on braces and another operation to re-repair & lengthen my palate which will help me speak and eat better. A whirlwind let me tell you! but a good one filled with excitement.
I cannot thank the staff enough at the Queen Elizabeth Hospital in Birmingham enough. They have been wonderful. I didn't seem like a number but an individual. The whole team where on hand at every appointment working together & making plans for me. Everyone was Nice, thoughtful and made me feel comfortable.
3 weeks can't come soon enough!


Update: February 2018.

Almost 38 years to the day of having my original operation at just 13months old, I am now being seen by the Cleft Team at Birmingham Queen Elizabeth Hospital.  I am in the process of having reconstructive surgery done on my palate to lengthen it which will help me speak and eat better.  Im also scheduled to have braces fitted to the top and bottom set of teeth to straighten them in March.  This may also help with my jaw locking and clicking as my bite is out of alignment.

I contact CLAPA back in October 2017 and eventually had my first appointment at QE in November.  In 3 short months I am having life-changing surgery and dental work.  I am so happy right now and just wish that i knew of the Adult Services and what they can offer to people in my situation 20+ years ago. 

The Cleft Team are aware of my upcoming (big) races (Outlaw Half Nottingham, Leeds Standard, & Outlaw Half Holkham) and they are doing their best to get the operation scheduled before May 2018 so that I can race.  With that in mind, i'm continuing with my fundraising so that other people have the same opportunity that I have. 

Thank you to everyone who has already donated last year - please share.

Original Post - I was born in California USA in 1979 with a Cleft Palate meaning I was missing the roof of my mouth. For the first year of my life, I was fed via a tube as bottle feeding was difficult. When I was a year old, I had an operation to build my palate and close.  I had a conversation with my Mom regarding my cleft as I need further information to take to the cleft specialist at Birmingham Queen Elizabeth Hospital. I learned that the total operation cost $30,000 but due to insurance, my mom just had to pay the excess of $6000 - quite a bit far off the $1000 I originally thought. Loma Linda University Hospital, San Bernardino, CA who did the repair also did the study's and research to see if it was hereditary.  Apparently it isn't hereditary although I beg to differ as my moms brother was born the same?  I was quite nervous when pregnant with Autumn.  The bottle teats my mom was told to use were special cleft ones that had to be pushed onto the cleft to seal it so I could suck but it didn't work.  She had to use premature baby teats and pierce them with another hole so that I could get more milk.  Following the repair, the stitching line was left in my mouth and taped to the side of my face which I find very amusing and bizzarre.  I looked like a fish :)  Further more my arms and hands were put in casts to stop me from putting them in my mouth.  This is how I scalded myself and have a scar on my hand!  Obviously I don't recall the difficulties that my parents went through as first time parents dealing with a newborn with a craniofacial abnormality however I was lucky enough to not have what I refer to as a hare lip - more commonly known as a cleft lip.  Nonetheless, I as many others born with clefts will have lifelong difficulties of hearing loss, speech problems and orthodontic issues to name a few and of course the psychological effects.

Not sure what a cleft is? see here - https://www.clapa.com/what-is-cleft-lip-palate/

I have undergone numerous operations over the years to assist with my hearing and my teeth, and have learned that the "repaired cleft" is never repaired. 

CLAPA was not known to my parents as I was growing up and they had only family support in California where I was born.  The services they provide are from in the womb to adulthood and beyond. 

https://www.clapa.com/support/

The events I'm booked to do are:

Liverpool Half Marathon, Leeds ITU Standard Triathlon, Upton Sprint Triathlon, Brat Standard Triathlon, Cardiff Half Marathon, 

There will very lots of other little road races through the year too.

I'm hoping to be selected for London Marathon next year on top of my half Ironman distances :)