Update on Jack

So finally on to the update about the dude.

I will start with our last trip to see the geneticist. We just discussed Jack in general and how he is getting on. We were discussing with him the fact that we have found children with similar to Jack after him saying that he hadn't really read about any cases like Jacks and he explained something which we hadn't understood when he first discussed the diagnosis with us.
Jack actually has three different types of cell. He has the one that has every perfect copy of each chromosome, then the copy that has only one copy of chromosome 21 and then he has a further type of cell which has one perfect copy of chromosome 21 and one that has a deletion in it. Therefore making him really quite unique. I know its ever so confusing and difficult to understand. I would love to know that Jack has a very bright and relatively 'normal' future but at the same time I wouldn't change him for all the tea in China. He really is so so special. I do have to admit to finding it very interesting. He is amazing.

We had an appointment with a podiatrist and finally we have found what has been going on with his legs and feet, I knew something wasn't right there. He has hypermobility in his knees and feet. His knees bend quite far backwards when he is stood and it has therefore made the tendon very tight. The podiatrist also described Jacks feet as strange haha. He said to look at them you wouldn't think that there was anything wrong but when you watch him walking they just do their own thing completely, they are all over the place. The muscles are working over time with each step he takes. He said when we have done a long walk or climb and we get up the next day and our legs are stiff and sore, that is what it must be like for Jack every day. With regards to the falling he said his legs probably just stop working at times because they are working so hard and he then crumples (the best way I can describe hoe he falls) to the floor. I hate to think that because he has gone so long getting up in the morning and having pain in his legs, that he is now just used to it as he never complains anymore. He is more of a trooper than I can explain. He is never a moment of trouble really considering everything he has to deal with. The podiatrist found him such a character that he said "I think we may need to review you once a week Jack just for entertainment purposes". It makes me feel truly blessed when others around him get as much joy from him as we do.

His speech is still coming on. He will have a go at saying anything now and even though there is alot that we still cant understand there is so much that we can and more importantly that others can understand.

He is still loving school and likes to tell us about what he has done with his friends each day, especially liking to tell us when someone has been naughty! He absolutely adores his taxi driver and escort, we were so happy when we found out that he was having the same ones again as he has a really strong bond with them and we also feel so comfortable with them. Its awful having to put him in a taxi to go to school so its really important to feel that trust. He did cry the other morning which was very out of character for him, very upsetting for me to see him off like that. When he got home I asked him why he had cried and he said "my want mine mummy" Que huge lump in throat.

I think that's about everything for now. I promise to keep this updated now with all his Christmas activities and also just interesting things we have done together as we aren't your average family!

 All seven of the kids.

Me and my boy.

Pictures of cake and bake desserts

Im rubbish!

I am so rubbish at this. A year is far too long to have gone without an update so I will split the updates over a couple of pages to make it easier to read!

OK so I will begin with the rest of the Paton tribe first. Our seventh edition arrived on September the third weighing 8lb 14....another girl! Jack is well and truly outnumbered now but we think its lovely that he has all these females to look out for him in years to come. Our sixth daughter is called Iris Mary Paton and is just a delight like her sisters and brother. Jack absolutely adores her and she gives him the biggest smiles when he talks to her. Really very special to see.

Ive found going from six to seven by far the hardest leap Ive done. I think because we are contending with the dreaded teenage years with the eldest two girls and also the business, it has made it quite a difficult change. I sometimes feel like I'm drowning rather than swimming!

The business is galloping along at lightening speed. It has been such a terrific relief that is has become a success this time. We have worked so hard that I truly believe it is our time for something good. I will include a picture of some of the desserts we do just so you have a clearer view of what we do. We have some really large customers on board now so the only way now is up. I must say though that there is no crueler job whilst you're on a diet!!

I think that's all I can update with for now. Will attach a couple of pictures of our new addition as well.
I really will try my best to keep this updated more often. An early new years resolution.

We are back!!

Eeeek I'm so sorry that it has been so long. Things have been very busy in the Paton household! I will start with a little update on the rest of us and then move onto whats happening with the main man.

Sooo I'm still in the middle of my access course in the hopes of becoming a midwife in the not too distant future. Its difficult at times and I feel a bit swamped with the work, I almost give it up on a regular basis and then I watch a birth programme, read a book or something on line and I think actually I will make a really good midwife. Ive almost qualified as a breastfeeding peer supporter I just need an assessment and a graduation party and we are all done. Very exciting.
Also we have just started up our own business again. We are doing the same thing as last time and baking great cakes and desserts for the trade. Its very stressful but exciting as we know that it will be highly successful this time.

Probably the biggest change in the household of Paton is the fact that number 7 is currently baking! Very big shock for us just after Christmas. We hadn't planned on any other small people but here we are and we are excited. It was obviously meant to be. Jack is convinced it is a baby boy this time. If you ask him he says baby boy and if you say girl he says NO in a rather stern voice. So we will see in August whether he is right.

Onto the dude. He had his DDAVP trial to see whether it would work for him, therefore allowing his consultants to know which medication to give him if he needs surgery for any reason. Its widely available in all hospitals so is actually the best one to use. He was such a brave boy as he always is, let them insert the drip with no fuss at all. He wasn't keen on having his blood pressure taken but he never kicked up a stink or anything. His blood pressure started at 120/80 but sadly the DDAVP dropped it very drastically to 66/58. He will need the heamate P in the situation of an emergency or surgery. It just means that if we go on holiday we will have to carry it with us and he will have to go to the big children's hospital in Manchester should he need it.

Jacks speech is coming on an absolute treat. He is such a funny little character. He never ever fails to put a smile on our faces, everybody that meets him just adores him. He still doesn't let anything get to him. He is still a mini man but his growth is steady, i laughed this morning as his favourite tshirt is a toy story one which his uncle bought for his third birthday. Its a 9-12 month shirt and he still loves it and it fits him perfectly. He will be 5 in June hahaha.
He was in the newspaper at Christmas, after he did his Christmas play. I will put up a picture of the story which I think was lovely. He really is such a special little man, I just cant explain how proud I am of him. His walking can still be a little toddler like at times and we are hoping that his physio can see him soon just to see whether he has improved. He has moved up to 30 month level in some of his school work which is just incredible.

 

This bottom photo is Jacks one direction pose!