Friday, 13 November 2015
Friday, 12 June 2015
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 :)
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 :)
Sunday, 15 February 2015
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!
Friday, 7 November 2014
Cake, cake and more cake!!
Hello blog reader peeps
Been a while again eh??
So lets start with the fact that Jack DID get his trike, we have the most amazing family and friends in the world without question. Its hard for him when he first starts to ride it but he absolutely loves it and of course he is more than made up with the yellow colour. It turns heads on the street as well :)
He has also got a wheelchair now which helps when both me and Tony are out with them. We make sure he still does plenty of walking as well though to keep the strength in his legs up. We took the children to Blackpool last weekend and he walked amazingly well. We all had a lovely time. Its great to get some time off and spend it together every now and again. There isn't enough of it!!
Jack is doing great! He is such a character and dare I say a monkey at times! His speech is amazing! He can hold a decent conversation with strangers now. Jack has a bag full of charm and within seconds of meeting someone he can wrap them round his little finger completely! It was Tonys 40th on the 25th of October and the dj took such a shine to Jack that he handed me his card and said to contact him if we ever wanted to do a party for him! See a complete charmer!!
Sooooo as you know I had said to raise the money for the trike I would face an enormous fear of mine and walk through the butterfly house in Chester Zoo. I did it!!!!!! One of the most terrifying things I have ever done in my entire life! I don't over exaggerate here either. The moment I walked in and saw them flying around I thought I was going to have some sort of breakdown! I had to take it one baby step at a time and put my hands on the side of my head to make sure I couldn't see what was coming from the sides. As soon as I got out I burst in to tears! It was a mixture of terror, relief, pride in myself and pride in my son! I would do it again tomorrow for one of my children :)
In other news we have been so busy with the business. It is so hard. We absolutely love what we do but we are getting tired. It takes most of our energy, our time with the children and our time as a couple. Things are just piling on top of me. Im struggling to balance everything I need to do and feel bogged down often. I can describe it as drowning some days! I need a few more hours each day just to do the day to day things. I feel like a terrible wife, mother and friend most days. We had to leave a wedding of one of my oldest friends last week before we had even eaten. I have never felt so embarrassed or sad in my life. Hopefully something will click soon and we can get into some sort of routine where we can take some time off and get some balance in our lives again.
Been a while again eh??
So lets start with the fact that Jack DID get his trike, we have the most amazing family and friends in the world without question. Its hard for him when he first starts to ride it but he absolutely loves it and of course he is more than made up with the yellow colour. It turns heads on the street as well :)
He has also got a wheelchair now which helps when both me and Tony are out with them. We make sure he still does plenty of walking as well though to keep the strength in his legs up. We took the children to Blackpool last weekend and he walked amazingly well. We all had a lovely time. Its great to get some time off and spend it together every now and again. There isn't enough of it!!
Jack is doing great! He is such a character and dare I say a monkey at times! His speech is amazing! He can hold a decent conversation with strangers now. Jack has a bag full of charm and within seconds of meeting someone he can wrap them round his little finger completely! It was Tonys 40th on the 25th of October and the dj took such a shine to Jack that he handed me his card and said to contact him if we ever wanted to do a party for him! See a complete charmer!!
Sooooo as you know I had said to raise the money for the trike I would face an enormous fear of mine and walk through the butterfly house in Chester Zoo. I did it!!!!!! One of the most terrifying things I have ever done in my entire life! I don't over exaggerate here either. The moment I walked in and saw them flying around I thought I was going to have some sort of breakdown! I had to take it one baby step at a time and put my hands on the side of my head to make sure I couldn't see what was coming from the sides. As soon as I got out I burst in to tears! It was a mixture of terror, relief, pride in myself and pride in my son! I would do it again tomorrow for one of my children :)
In other news we have been so busy with the business. It is so hard. We absolutely love what we do but we are getting tired. It takes most of our energy, our time with the children and our time as a couple. Things are just piling on top of me. Im struggling to balance everything I need to do and feel bogged down often. I can describe it as drowning some days! I need a few more hours each day just to do the day to day things. I feel like a terrible wife, mother and friend most days. We had to leave a wedding of one of my oldest friends last week before we had even eaten. I have never felt so embarrassed or sad in my life. Hopefully something will click soon and we can get into some sort of routine where we can take some time off and get some balance in our lives again.
Tuesday, 20 May 2014
Absolutely BLOWN away!
Hi folks. I will start with a bit of an update on things. The Paton family has had a bit of a rough ride since I last spoke to you way back in November. Just before christmas we got a letter to say that our landlady would be selling the house and would like us to leave by April. We were horrified/terrified and really sad. We had hoped that once we had built ourselves back up from the fall a few years ago that we would be able to buy that house but alas it wasnt to be.
We started to approach other estate agents and were quite frankly disgusted with the treatment that we received from many of them. Now I know that our situation is a little............colourful lets say, we certainly are not criminals or bad people which is exactly how we were made to feel.
We were open and honest about our past bankruptcy and explained how it came about and how we have come forward to taking the plunge with the business again and how successful it is becoming. They werent interested! Some refused to see us, refused to even speak with the landlords, some wanted 6 months rent upfront each time and some werent even willing with a guarantor. We were so scared as to what would happen. The local council just dont have property for a family of our size, which in lots of ways is fair enough. We would never have decided to have 7 children if we couldnt pay for them ourselves but things happen sometimes.
Luckily a very very special friend of ours offered to be a guarantor for us and that on top of a fabulous landlord, who we will be forever grateful to for giving us a chance, we found the most perfect house and moved in March. We really hope that this will be the last time for a while now. The uncertainty of rental properties is scary, especially when you are a family of our size who cant easily be helped. Keep everything crossed for us that we get some years here. We would never afford to buy it! haha. The very best thing about this house is that it means I get to walk Jack to school everyday!! No more taxi. We do all miss Liam who was Jacks taxi driver before but we get to see him in the mornings which is lovely!
Business is going well. We are really pushing ourselves and have been quite drained just lately. Its been so very busy and on top of housework and appointments, kids and everything else it can be tough. Its very important to us to make a success of this though for our children as well as ourselves.
The walk to school has shown us a couple of things about Jack. Ive always known that his legs werent very strong and that distance could be an issue to him but I didnt realise how much he would struggle. Sometimes a 10 minute walk for me can take him 45 minutes. He becomes very tired and he actually looks exhausted by the end of the day. We went to see his physio and podiatrist and they have referred us for either a maclaren or a wheelchair for days out which will be a great help but they also mentioned about some specially adapted trikes that we could look at. I push Iris and have Bonnie on a buggy board so I couldnt push Jack as well. We went to have a look at the trikes yesterday and Jack LOVED them. The only downside was that we would have to fund it ourselves and its £900! There are charities that you can go to that can help but I have felt like I really want to do something myself, I want to feel like I have achieved something for my amazing son. Sooo as I am terrfied and i repeat this terrified of butterflies and moths, the worst and hardest thing I can think of is walking through the butterfly tunnel at chester zoo. Now I will add at this point that I did try this once and almost fainted at the entrance!
I have decided that I will do this on the 31st of May (day after my birthday..happy birthday to you!) and I have set up a funding page. I truly cannot put into words how blown away/overwhelmed/emotional and grateful we are at the response...ok ok yes that is a few words to describe it but not the magnitude of how I feel about it!
In no time at all he will be riding around and enjoying himself. It will help to strengthen his muscles as well as relieving his legs on long walks and Tonys shoulders on days out ;)
Jack is a boy that never ever fails to light up a room. I sometimes have to pinch myself that he belongs to me and I made him. He is beautiful beyond what you can imagine and has an aura of happiness about him. He loves nature and animals and always just seems to happy to be alive! He takes pleasure in things that me and you would take for granted. People can learn a lot from Jack, they really can. He is brave and never complains even when things must be hard for him, particularly when people cant understand what he is trying to say. To see him sat on the trike will mean alot to us all, his sisters included who feel the same pride and joy at him being a part of their lives. We are truly a blessed family and the kindness of family, friends and strangers is mind blowing. Thank you.
http://www.gofundme.com/93p238
We started to approach other estate agents and were quite frankly disgusted with the treatment that we received from many of them. Now I know that our situation is a little............colourful lets say, we certainly are not criminals or bad people which is exactly how we were made to feel.
We were open and honest about our past bankruptcy and explained how it came about and how we have come forward to taking the plunge with the business again and how successful it is becoming. They werent interested! Some refused to see us, refused to even speak with the landlords, some wanted 6 months rent upfront each time and some werent even willing with a guarantor. We were so scared as to what would happen. The local council just dont have property for a family of our size, which in lots of ways is fair enough. We would never have decided to have 7 children if we couldnt pay for them ourselves but things happen sometimes.
Luckily a very very special friend of ours offered to be a guarantor for us and that on top of a fabulous landlord, who we will be forever grateful to for giving us a chance, we found the most perfect house and moved in March. We really hope that this will be the last time for a while now. The uncertainty of rental properties is scary, especially when you are a family of our size who cant easily be helped. Keep everything crossed for us that we get some years here. We would never afford to buy it! haha. The very best thing about this house is that it means I get to walk Jack to school everyday!! No more taxi. We do all miss Liam who was Jacks taxi driver before but we get to see him in the mornings which is lovely!
Business is going well. We are really pushing ourselves and have been quite drained just lately. Its been so very busy and on top of housework and appointments, kids and everything else it can be tough. Its very important to us to make a success of this though for our children as well as ourselves.
The walk to school has shown us a couple of things about Jack. Ive always known that his legs werent very strong and that distance could be an issue to him but I didnt realise how much he would struggle. Sometimes a 10 minute walk for me can take him 45 minutes. He becomes very tired and he actually looks exhausted by the end of the day. We went to see his physio and podiatrist and they have referred us for either a maclaren or a wheelchair for days out which will be a great help but they also mentioned about some specially adapted trikes that we could look at. I push Iris and have Bonnie on a buggy board so I couldnt push Jack as well. We went to have a look at the trikes yesterday and Jack LOVED them. The only downside was that we would have to fund it ourselves and its £900! There are charities that you can go to that can help but I have felt like I really want to do something myself, I want to feel like I have achieved something for my amazing son. Sooo as I am terrfied and i repeat this terrified of butterflies and moths, the worst and hardest thing I can think of is walking through the butterfly tunnel at chester zoo. Now I will add at this point that I did try this once and almost fainted at the entrance!
I have decided that I will do this on the 31st of May (day after my birthday..happy birthday to you!) and I have set up a funding page. I truly cannot put into words how blown away/overwhelmed/emotional and grateful we are at the response...ok ok yes that is a few words to describe it but not the magnitude of how I feel about it!
In no time at all he will be riding around and enjoying himself. It will help to strengthen his muscles as well as relieving his legs on long walks and Tonys shoulders on days out ;)
Jack is a boy that never ever fails to light up a room. I sometimes have to pinch myself that he belongs to me and I made him. He is beautiful beyond what you can imagine and has an aura of happiness about him. He loves nature and animals and always just seems to happy to be alive! He takes pleasure in things that me and you would take for granted. People can learn a lot from Jack, they really can. He is brave and never complains even when things must be hard for him, particularly when people cant understand what he is trying to say. To see him sat on the trike will mean alot to us all, his sisters included who feel the same pride and joy at him being a part of their lives. We are truly a blessed family and the kindness of family, friends and strangers is mind blowing. Thank you.
http://www.gofundme.com/93p238
This is a picture of Jack trying out the trikes yesterday.
Thursday, 7 November 2013
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.
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!
Me and my boy.
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