He was contantly throwing up even though he was being fed by a nasel gastric tube for his first 8 months of his life.

His milestones were late, he was very floppy and we were not any closer to a true diagnosis. He had an aversion to food and wouldn't try any that had lumps in it. He would gag when offered. The Consultant diagnosed Connor as a failure to thrive baby, She was not convinced that he had Noonan Syndrome. My heart sank at this comment as it was so frustrating and worrying as my wee baby was only skin and bone and he was loosing weight in front of my eyes, and there was nothing I could do.

Connor was having PT and OT every week, I was given exercises to do at home with him. He attended a dietition and was given suppliments to mix in his feeds so as to try and get some weight on him. Constipation was a mega problem. He had already had three bowel operations and fiures removed, but still he continued to have problems. We were in a catch 22 situation as eating, vomiting and not being able to poop remained a problem. My heart was aching for my wee man. Watching him struggle to do things that most parents take for granted for their children had me wondering what was going to happen to him, I lived every day in fear that God might take him too soon.

I knew that being his Mum was going to take guts and I felt so guilty that my baby was having such a rough time. I found it hard to bond with Connor, thoughts of doom entered my mind. What if he has to go? Was his heart strong enough or was mine for that matter? I got used to him setting the heart monitor off while he was sleeping. My own heart would skip a beat until I knew that he would gasp and I could hear the beeping of the monitor again.  It was heart rentching to watch him struggle every day and it wasn't long before I noticed that his legs and feet would turn purple, his lips would turn blue and he would have shortness of breath. The Dr decided to do a catheterization. From that they discovered that he had a thickening around the pulmonary valve and two holes in his heart. They continued to monitor the (PVS) pulmonary valve stenosis and he has never needed open heart surgery to fix it but still has it checked every 5 years.

At 17 months old he was diagnosed with Asthma, allergies and eczema, he also was then given the clinical diagnosis of Noonan Syndrome, at that time there was no gene that had been found  responsable  for Noonan Syndrome. Connor's immune system was so low that he seemed to catch anything that was going around. The Dr then decided to put him on a small amount of antibiotic every night just to cover his kidney that was still enlarged. Chest, throat and urine infections were the norm for him. A few of these infections landed him in hospital but that's another story.

Now you are probably wondering how it was with my big boy Lee? I always felt like he came second, not that I meant for that to happen I did know that he needed me just as much as Connor. Lee wasn't without his own health issues.He was prone to taking ear and throat infections and before starting school he had his tonsils and adenoids removed, at the  same time they put grommits in both ears. Oh boy! did I think that I could relax now or so I thought. The grommits fell out after a few months and his hearing was declining so he had to have a second set put in. Also at this time they had to lengthen the bone in his nose to help him breath better. As Lee was recovering at home Connor was getting ready to have his first eye operation. He had a squint in both eyes and this caused a huge problem for the Dr's as they were not sure which muscles controlled which part of the eye. He then went on to have three more eye operations. When he was 12yrs old eye ops were no longer an option as he was having double vision so he was given a botox injection directly into the muscle in his eye. He has had four botox injections to date.  This was very difficult for me as he had to have these done under local annisthetics and as always he was adament that I go with him to hold his hand while the procedure was being done in the O.R. I have always been right there beside him.

Well It's late so I think I will leave it there for now. Promise to be back with our next chapter soon.  

Continuation of Our Story as promised.

I know that he will need more surgery in the future to re construct his face as he has low set ears and droopy eye lids (ptosis), infact both my boys have this condition. Lee is in the process of checking the surgery out but he has came up with a few problems as he is now waiting on results from an abnormality which was picked up about 4 years ago but was never disclosed to us. Connor's surgery will be more complcated as he has flat cheek bones and will need bone taken from his thigh to be transplanted. This is Connor's decision when he chooses. 

                              Oh! my this story is proving difficult to put down on paper. Looking back we were living as we do now which is one day at a time. There never seemed to be a week that one of us didn't have some appointment of some kind. My worry always flipped from one boy to the other. Lee's health was very worrying from the age of 10yrs. He was having headaches, was hyper for a few weeks then would come down with a huge bang.At this time he was referred to a Psychiatrist at CAMH. Mental health was rulled out at this time. His Pediatrician decided to put him on an anti convulsant as he thought it was a cross over from migrains and epilepsy. At age 11yrs he was diagnosed with Auto immune hypothyroidism and was put on Thyroxine. For the next few years Lee continued to see a psychologist and he then went on to gain a few more diagnosises. Episodic type 2, Bipolar and Schizoaffective Disorder. Miathenia Gravis is a big ?