Here is the next part of my Master S's story. If you are reading for the first time, Squiggly Sundays have been a place where I share my life story. Quirky, distressing, real as it is. You can find previous posts here:
The very first; followed by this; Squiggly Sunday part 2. Then some high school days; followed by meeting Mister DCT and Miss G.
So here is part 1 of my Squiggly Sunday post about my middle child, my first born son, my Master S.
And now part 2 - Master S
There is so much to write - and life has been so busy here.....
My darling boy, who is so big now - and so grown up. Looking at these pictures, prompting memories. He was so unwell for his first few years of life. Master S lived with constant chest infections. Due to the lack of experience with BWS in Australia - our doctors could never really pin point what was causing Master S to be so unwell all of the time.
In my personal research and eventually finding a wonderful GP when he was about six years, we concluded it was due to his enlarged tonsils and andenoids among a mid-face hyperplasia.... In laments terms, this means that he had an under-developed middle of his face - albeit his tonsils and adenoids being bigger. This causes greater susceptiblity to colds and flu and upper respiratory infections.
Miss G was the most nurturing big sister. Her love for her baby brother was so genuine and motherly. She too would get a little sick after being so affectionate. The many trips to the Royal Childrens Hospital in Melbourne we observed to be a significant contributor to germs - after each visit Master S was ill within a few days. The worry of having a darling baby sick all the time - it's hard to explain. Those of you that have experienced it will understand - my only way of describing it is with simple words; faith, love, worry, tears, nausea, sleeplessness, faith, love and worry.
We would notice in the next few years, some of Master S's habits (licking ballustrades and licking counter tops) actually caused him to be sick. We didn't understand at the time what this sensory behaviour was about - we just thought it was something boys do.
My babies turned 1 and 3 three days apart from each other - they almost look like twins. Miss G is so petite and Master S grows on the 98th percentile (another Beckwith-Wiedemann characteristic).
As time rolled on in 2002, we knew one of the biggest days of our lives was ahead of us. As parents one makes the best decisions they can at the time, based on the circumstances. Our Master S due to the size of his tongue had developed a sever food aversion. He reverted back to bottles at the age of 12 months. He could not close his mouth. He had constant drool and a disturbing rash on his neck and upper chest due to the constant dampness of his clothes. No sooner would I change him and he would have dribbled all over himeself. Master S could not sleep through the night - he had sleep apnea.
We had visited the Maxillofacial and Craniofacial unit at the Melbourne Royal Children's Hospital and worked towards a surgery date. Surgery for a glossectomy; also known as tongue reduction surgery. Few of these procedures had been done in Australia at the time, our surgeon had performed less than five when Master S was operated on.
It was the most difficult decision to make - it was not like emergency surgery when it is a life or death matter. If it went wrong - we would be to blame (so I felt). We chose what we felt was best for our boy. We wanted him to be able to eat. He could not close his mouth without biting his tongue as his tongue filled over his teeth-line.
So on October 15, 2002, our son had his tongue reduction surgery. Approximately two thirds of his tongue was taken away and a new tip was made. This is us before surgery.
My darling, brave boy in the intesive care unit.
The black piece of cotton is an emergency tongue stitch. If huge amounts of swelling occurred and blocked his airway - we were to pull his tongue forward with this.
Watching Hi-5 was the only thing that settled Master S. Thank goodness for hospital television.
One of the most difficult things was that my baby did not smile. He did not smile for 8 days. He did not eat for 10 days and we were not allowed to be discharged until he ate.
I had such a fright when his tongue began to reduce in swelling. I thought his stitches were falling out - however I was informed there were hundreds of stitches in my boys tongue.
He recovered reasonably well. It took about 8 weeks for swelling to go down completely. We began to do our regular things again - especially with Spring in the air and no more winter colds and flu.
Master S would kick doctors when we saw them. His timidity began to increase, he was 14 months of age now. We hoped our appointments with specialists and doctors would slow down... if only we knew!
I am so thankful for all of those appointments. At times I wish many people I know could just go and sit at McDonalds in the Royal Childrens Hospital - take a look around; and be thankful.
Another Squiggly Sunday snippet for you....
Sorry they are so slow coming. Miss G is currently on the couch with influenza - so my nurse duties are calling!
Much Love to you Rach xx.