Tyler was diagnosed in England, not tested as there is no test. But from looking at him. We were told after he turned 1 yr old.

Tyler went a year when he had no growth at all - they decided to put him on growth hormone which did start his growth again but very very little. He was on the hormones until we got to Calgary, Canada and then he was taken off them we were told he did not meet government approval as there where no boxes to tick for Tyler. He has been off them for a year now.

Tyler had a G-tube before he turn 1 yr old as a Dietitian said he would die because he was not able to eat enough. After she told me to force feed Tyler, he stopped eating all together by
mouth so we had no choice to move on to the next stage. We were told to wait until he told us he wanted to eat and we had to give in and feed him because he went over 8 hrs with no food and then he still didn’t want it!

After his 1st birthday Tyler had surgery to put a Mic Key in his stomach to feed him by machine. Tyler to this day has the G-tube only for night feeds only now to top up his calories as he is so very active!!

A month before we left England Tyler had surgery to bring one of his testicles down - they wanted to bring them both down but there pea sized and very hard to find and they where scared he would bleed in to them and they would die.

Since we have been in Canada Tyler has had many tests done a lot more than the U.K ever could have offered. Tyler has had a MRI over six months ago, nothing life threatening but there
were some things flagged at the time but all very technical, I couldn’t begin to tell you I wouldn’t know were to start.

Tyler has very skinny frail bones and since we have lived in Canada he has had two broken legs within a month of each other, both casted. But the last one was really bad. I have never seen him in so much pain, it made us both cry!! It happened at his special needs program - he was playing with a ball I’m told by his aid worker and he stood on the ball and it rolled a little and Tyler’s right leg locked on the carpet and he had a twisted left leg break it was so gross on the xrays he had to be sedated it was that bad. It was completely snapped in half like someone had shaved his bone in half. Tyler did not moved from the sofa for over a week he did not walk on the cast for 7 weeks then the Dr decided as he was not able to bath to make a splint for his leg so i could bath him and take him swimming to build his leg strength back up . It happened in September 2006 and the CAST OFF and the OK from the Dr was February 2007. Since the break of his leg, Tyler has to be in arms length of his aid worker and he is not allowed shoes in there anymore.

Tyler has been to see the dentist as this is one issue with M.O.P.D children. The dentist said Tyler’s teeth were in good condition but very small - I think he would look odd with big teeth myself but anyway. He is going back in May for a check up.

Tyler is still not talking coming up to age 4 years old. he talks but in his own way, sometimes we understand but a lot of it we don’t. He is making some progress and saying some things now.

As his speech has been such a problem - Tyler has and still is under the hearing clinic for sometime now. He can hear loud and medium pitch but not low pitch noises. As a result, he had tubes put in his ears and he had to be put to sleep for this. Many hearing tests. The tubes were taken out as they did not work for him, things did not improve for him and they were coming out on there own. He recently had another surgery and they took them out and cleaned his ears and did a brain steam test which showed as normal. Since the ear cleaning, things are a tad better. He is waiting for an appointment for a CT Scan now and then they will finally be able to say one way or another if things are just like this because Tyler is made this way or if there is something not right they can help with.

Thing is, Tyler has the smallest ear hole I have ever seen in my life, not even their probes fit in Tyler’s ears, or a Q tip. Tyler is under the Cardiologist for his heart - he has a heart murmur and
the three chambers at the bottom of his heart are open. They said within time they should close. He has a large chamber at the top that is open which they said will have to have surgery on it as it lets too much blood through. We go back the 30th of May and he will have another Eco done.

Tyler is under the eye specialist - he doesn’t have glasses yet but may soon as he is far sighted the Dr was quite surprised. Tyler can make he eyes turn in ways I have never seen. He can make his eyes roll back, the Dr said he has strong eye muscles. He is due to go back soon I have to wait for the referral to come from his peds Dr. She is amazing. She is always on the net looking for more info on Ty’s condition.

Tyler was also born with hypospadias. Hypospadias is an abnormality of the penis, which affects about one in 300 boys at birth. In this condition, the opening of urethra (the tube that carries urine and semen out of the body) is on the underside of the penis instead of at the end. The urethral opening may still be on the glans, or head of the penis, or it may be further down the shaft. his urologist thought it was a straight forward surgery and was going to bring his other testicle down as well until he had to stop the surgery and call in another Dr for his opinion. Tyler had a very bad case and it took three hrs just to repair the hypospadias so he couldn’t leave Ty under any longer. It took him 4 hr to come around his face swelled, his eyes where slanted I did not recognise him. It scared the hell out of me. He had to stay in over night as he was supposed to be a day surgery and he was on O2 because of his stats - and Tyler could have proper pain control through a IV.

A month ago he had his other testicle brought down with no problems - to look at Tyler with no diaper on he looks like he doesn’t have any testicles at all but we know they have been brought down. The longer they stay up the chance of cancer is greater!!

We were told in England the chances of Tyler being able to father a family are 0% which is quite upsetting I have to tell him this some day. I figure in this day and age modern medicine would have come on so much by then that it may not be an issue.

Tyler just had blood tests for his kidneys - they where okay as this is also a problem in this condition. They did pick up that Tyler’s vitamin D was quite low so he is on extra oral vitamin D now, along with Poly V Sole and Poly farendate (iron) and his Pleasure plus with fibre.

Apart from all of that I’m sure I have missed quite a lot but you get the point. Tyler is the most stubborn and active child I have ever known. He is up sometime from 3:30 in the morning and screaming because he wants to go in the bath. He just doesn’t sit still and that’s why he needs a whole lot of extra calories.

He is a very happy boy - with incredible strength, he can swing on the bath and toilet in the air, carry huge, huge toys - he will not be beaten but if he was any other way I think he would not be here now. He is a little fighter.

Tyler is still in diapers and is showing no sign of going on the toilet despite his OT getting things made for him.

He goes swimming a couple of times a week and the ladies say he should be in lessons as he is like a duck in water.

Tyler is madly in love with HORSES. He is just horse mad, everything is to do with horses. He does a horsey run, makes the noises but 9 times out of 10 this is what he is doing during the
day!

I tried to put him in lessons but they said due to his size and age they could not take Tyler
which was very sad for us. But at the stampede this year I spoke to one of the ladies who works with the Clydesdale horses and she said they where not supposed to do this but as Tyler had a passion for horses they would would let him. It was kind of ruined by other people though they pushed us to the side once people saw the horse out because they wanted to take photos with the horse. So we thanked the lady and left it was a bit too much.

And he is popular in preschool all the kids love Tyler. When he broke his leg and was off some children would not attend because he was gone. He is sooo social able it scares me. He will grab a strangers’ hand and walk them around to his toys or what he is interested in. Last week some man picked him up and was walking around with him. I was not happy I couldn’t understand why someone would pick some one’s kid up in this day and age, was he crazy!!

I hope you made it to the end - sorry so long but we are not a straight forward family!!