Updated photos ❤️

Rare chromosome disorder week and other stuff!

Well hi everyone. Hope all of you are fine and dandy! Thanks for checking up on the Paton madness!

First of all we have moved! It has been an exceptionally rough time but we have moved. The older girls have a school bus within walking distance and I drop the main man and Isabelle off at school. Im finding the drive really hard. I have no idea why but driving makes me so anxious. The first thing I think when I open my eyes is "oh no I need to drive to and from school" I know I will get used to it in time and its so worth it. I cant even imagine having to put my main man in a taxi again!

I had plans to close down this blog. I wont go into details but I was very upset to learn that it had been used for something other than what I intended it for. I know I have written it for anyone to read and I love that people have read it, at times though I have been really honest about feelings and worries so it hurt me a lot. Nothing serious so dont worry!
Anyhooo the reason I wrote it was to reach out to anybody that might have a child diagnosed with MM21. When Jack was first diagnosed there were only about 3 things I could find on google so I wanted to make sure that if anyone else had to look it up they could find me. This very thing happened last year. A wonderful lady contacted me to say she had read my blog. She was desperate. Her daughter had been diagnosed and the doctors were giving her no hope for the future as they had never seen it before. I emailed her back and told her about my guy and she shared pictures and stories of her incredibly beautiful little miracle. She and Jack look so alike! I put her in touch with the group I had found of other children and she joined our family.
This week is rare chromsome disorder week and I got this post and message from her. I was and am so touched by it. This is the exact reason that I started this and the very reason I will continue to do so. She has allowed me to share it with you:

As this week is a week of chromosome disorder awareness week i would like to thank every one in this wonderful group for being a great support for me and my baby girl though our journey!
I hab good and bad days, tears and fears and i always knew that parents and grandparents of this incredible family will help me, support me and share more information than any other doctor!
Thank you all sooo much and God bless all your families and sweet little cuties!!!
Thanks for letting me to be the part of your family!
A special thanks to Shell Paton, for responding to my first letter seeking for help and for inviting me to this group!
I am proud to be one of you and can't stop admiring how great, loving, caring and very special parents you all are!

Shell,it meant so much for me when i got your answer! I think i will never forget the happiness when i saw your answer and saw the cutest little boy Jack! Jack gave me hope that everything is possible and doctors may be wrong! And then one after another i found support from every member of this group, i saw wonderful kids who proved the doctors all over the world wrong and showed what is real fighter means!!!
Your support meant and means sooo much to me! I can't even explain how lost i were before i saw Jack, before i got your answer and before i joined to the group! If not your blog i don't even know where i would be now....

I really am truly moved by this.

Ok on to the main guy. His dad has had to take him to his last couple of appointments. Jack saw his haematologist and they have taken a lot of blood to run some platelet tests. We still dont have the results back from this yet but they do take a while. His bruising has been up and down. He went through a spell of having bruises right in the middle of his chest which if he didnt have such wonderful teachers at school I would be worried people would think I was hurting him!
Jack has also had a paediatric check up. He saw a new consultant this time who was really interested in him. He has referred us for another EEG now that Jack is older, there are more in depth testing they can do. His 'spacing out' hasnt been quite as bad but one morning I asked him to take his breakfast bowl to the kitchen and he stood and just poured all the left over milk down his front. It was really strange!
We have some pots for some more detailed stool sampling (sorry hope you arent eating ;) )
The doc wants to see him again in 6 months which is great. I feel like we are getting somewhere.

I had a meeting yesterday with Jacks speech therapist. His language is really coming on but his forming of words still isnt quite right. She wonders whether he has something structurally wrong inside his nose as he does sound very nasal when talking. When he was a newborn and he was sick after a feed it would shoot down his nose. It was like it had jet power behind it, quite the party trick! This makes me think that they may be on to something so she has referred us to the cleft team at the dental hospital for them to have a good look. Just another little quirk to my most favourite boy in all the land! 

I will update as soon as we have results or have been to other appointments. Will leave you with a couple of pics :)

So here we are again!!

I actually can't believe I am having to write this again when it hasn't even been 12 months since the last time! 

We received a phonecall yesterday morning from the landlord to say somebody who viewed the house when it was for sale has contacted him to say that they can now afford to buy it and he wants to sell it! I can't even tell you how worried I am about this. We were given 5 months last time and it's looking likely to be 2 months this time. 

I will tell you our complete story from the beginning and give you a bit of an insight into why we are a tough case.

Back in 2008 we started up a business making desserts, business took off but much slower than we thought. This became a problem when the house bills started to get behind and we begun the vicious circle of chasing our tails. We would pay large amounts off as we were chased which would then in turn leave us with no money to pay other bills which would then get behind. It came to a head in 2010 when we could no longer do it and we lost our home and had to declare bankruptcy. We found a house to rent and started to rebuild our lives. On doing the last books we saw a healthy profit had been made and we knew that for everything that had happened our business had been working and that when the time came we would start again. 

Over the next couple of years we begun to buy bits of equipment where we could and storing it away.

In 2013 the time was right for us to start again so we got a premises and because of the product and service we provided the first time our customers all began to use us again meaning we were making money straight away. Business was booming. 

Just before Christmas of that year we got a letter from our landlady to say she was putting the house on the market and we were given 5 months to find somewhere else to live. We couldn't have foreseen the hell we would then go through to house our family. Estate agents wouldn't even talk to us. 7 children, self employed and an old bankruptcy and we were treated like criminals by one or two of the larger estate agents. Our local council don't have houses big enough for us all and even shelter couldn't help us. Now before I go on and one or two of you think to yourselves "well they shouldn't have so many children then" we NEVER had a large family with the intention of needing council help. We have always fended for ourselves and what you must understand this time is that we are not only paying tax for ourselves but we employ four other people and pay their tax too so we are more than giving into the system. I will never be regretful of our choice to have so many children. God knows they have made us smile through some dreadful times through the years.

Anyway we eventually got a break when someone very special agreed to sign as a guarantor for us and we found a willing landlord. We pushed it for time and it was creeping very close to our move out date. It took us 4 months to get into somewhere else. We've never been as happy in a home as we are now and then the phonecall of yesterday!

I can't even begin to contemplate having to go through this again. Why is it always us? We are good people, we work hard and yet here we are with homelessness looming over us again. So again I call on all of our friends to look out for houses around Stockport and to ask around if anyone knows a landlord who has a house available for us or anyone else who knows of a way to help us out again. I'm struggling to feel positive about this. I know I need to shake myself, give myself the drop dead Fred treatment of a spade to the head and a kick in the shins but all I want to do is crawl into a dark corner and stay there. I just feel sad!