Just a little about where I am up to at the moment.
Im not sure whether I have mentioned before that I want to be a midwife. Is something that I have always been passionate about and so much so now. So many of my friends and family have been through so much in the last year that its made me want to help people even more. From IVF to sadly sleeping angels. I really want to do it. However trying to fit everything in is so hard at the moment.
Im doing a GCSE Maths and an IGCSE human biology from home which is hard as I am the worst person at maths EVER.
Im also doing a health science access course at college and its very full on. I now have 2 assignments on the go one for the sciences part and one for the psychology part. I also have 3 core skills booklets on the go. A maths one, an IT one and a personal development one. On top of all this I have the house and children and Im also still learning to drive. I dont have a lot of spare time at the moment and I know its going to be exceptionally difficult to get onto a midwifery course but i know that if I can get that chance I would really make a great midwife (and I dont big myself up about things normally).
Friday 5 October 2012
No news is good news...
Well hello there,
Its been ages since I last updated on here and I'm exceptionally happy to say that its because there has been nothing to say. We seem to be on a nice smooth road at present and Jack is bobbing along quite nicely with everything.
He has now started at school. The first week was stressful on both myself and Jack. He cried when he got in the taxi every morning and I can honestly say that first time was one of the hardest things Ive had to do as a parent so far. Ive been there to hold the hands of all my children on their first days at school and been the first familiar face they have seen when they have finished for the day. To not be there for Jack was just heartbreaking. He was so frightened as well.
However, since then he gets in happily, almost skipping some mornings and he is loving school. He especially loves it when they do baking and is very proud to be able to show you what he has made. I will share a couple of pictures at the end of this blog of the things he has made so far.
He tells us every day about how his Kayleigh-May is and was very concerned explaining in his way that she had a sore ear.
At the moment he is going through a bit of a 'naughty' patch! He floods the toilets by switching the taps on and putting the plugs in. He will then stand at the door with his arms and legs spread to try and keep you from going in. Its naughty but we did have a little laugh last night when we got in bed that he thinks he can keep you out haha. I'm not sure whether maybe one of the children at school has a thing for flooding the sinks.
We have had a paediatric appointment since I last wrote and his EEG results have all come back normal. He said this doesn't mean that there is nothing going on but we are all happy to leave things as they are at the moment. He does still space out at times but its not quite as often as it was for that brief period. We will wait and see how that goes for now. We mentioned to them that every poo that Jack does is runny. They have put it down to a toddler diarrhoea that should sort itself out when he hits around 5. It has been tested in the past although that was back when he was 2. Again I'm happy to just plod along just for now as he is still being seen every 6 months anyway. They mentioned maybe checking his hormone levels because of his size but since he is in proportion again I think that it would be best to leave things. I really don't want him to have to be pumped with any kinds of drugs or medication when things are going OK.
His speech is still plodding along nicely. He has started to say 2 and 3 words in a row. He still cant use any fill in type words so doesn't say and, the, is or anything like that. Its literally 2 words. Its all wonderful progress though and more often than not these days I can understand what he is saying which is great for me but must make Jack feel so proud as well.
Its been ages since I last updated on here and I'm exceptionally happy to say that its because there has been nothing to say. We seem to be on a nice smooth road at present and Jack is bobbing along quite nicely with everything.
He has now started at school. The first week was stressful on both myself and Jack. He cried when he got in the taxi every morning and I can honestly say that first time was one of the hardest things Ive had to do as a parent so far. Ive been there to hold the hands of all my children on their first days at school and been the first familiar face they have seen when they have finished for the day. To not be there for Jack was just heartbreaking. He was so frightened as well.
However, since then he gets in happily, almost skipping some mornings and he is loving school. He especially loves it when they do baking and is very proud to be able to show you what he has made. I will share a couple of pictures at the end of this blog of the things he has made so far.
He tells us every day about how his Kayleigh-May is and was very concerned explaining in his way that she had a sore ear.
At the moment he is going through a bit of a 'naughty' patch! He floods the toilets by switching the taps on and putting the plugs in. He will then stand at the door with his arms and legs spread to try and keep you from going in. Its naughty but we did have a little laugh last night when we got in bed that he thinks he can keep you out haha. I'm not sure whether maybe one of the children at school has a thing for flooding the sinks.
We have had a paediatric appointment since I last wrote and his EEG results have all come back normal. He said this doesn't mean that there is nothing going on but we are all happy to leave things as they are at the moment. He does still space out at times but its not quite as often as it was for that brief period. We will wait and see how that goes for now. We mentioned to them that every poo that Jack does is runny. They have put it down to a toddler diarrhoea that should sort itself out when he hits around 5. It has been tested in the past although that was back when he was 2. Again I'm happy to just plod along just for now as he is still being seen every 6 months anyway. They mentioned maybe checking his hormone levels because of his size but since he is in proportion again I think that it would be best to leave things. I really don't want him to have to be pumped with any kinds of drugs or medication when things are going OK.
His speech is still plodding along nicely. He has started to say 2 and 3 words in a row. He still cant use any fill in type words so doesn't say and, the, is or anything like that. Its literally 2 words. Its all wonderful progress though and more often than not these days I can understand what he is saying which is great for me but must make Jack feel so proud as well.
Sunday 5 August 2012
Holiday and last day of nursery
Well hello everyone,
We have been having a busy time here at the moment. Jack has finished nursery now :( I just cant put into words how grateful we are to the staff for everything they have done with Jack and Im sure they will miss Jack as much as we will miss them too. Its heartbreaking really but hopefully we can take Jack to see them sometimes.
His last day of nursery was so sweet. They had a little awards ceremony and each of the children won an award. Jack won explorer of the year as they said he was found doing a bit of everything. haha.
We have been on holiday as well. We went to Brixham in Devon. We all had a truly wonderful time. Its such a beautiful part of the country and we cant wait to go again. Jack threw himself into everything that we did. He LOVED the beach and even did some paddling in the sea. He did fall into the water at one point which was so funny, he has been telling everyone aahdooof (this is what he says for fall over), he also found it hilarious. He really enjoyed dancing in the club on the evenings. We also went on the golden hind full scale replica and he has been doing 'garrr noises all the time.
Ive got a couple of pictures to share with you. One is the last day of nursery. So cute, you can also see how his thumbs are affected by the hypermobility on this one. I also have one of him enjoying the beach. As always thanks for reading and checking in on us.
We have been having a busy time here at the moment. Jack has finished nursery now :( I just cant put into words how grateful we are to the staff for everything they have done with Jack and Im sure they will miss Jack as much as we will miss them too. Its heartbreaking really but hopefully we can take Jack to see them sometimes.
His last day of nursery was so sweet. They had a little awards ceremony and each of the children won an award. Jack won explorer of the year as they said he was found doing a bit of everything. haha.
We have been on holiday as well. We went to Brixham in Devon. We all had a truly wonderful time. Its such a beautiful part of the country and we cant wait to go again. Jack threw himself into everything that we did. He LOVED the beach and even did some paddling in the sea. He did fall into the water at one point which was so funny, he has been telling everyone aahdooof (this is what he says for fall over), he also found it hilarious. He really enjoyed dancing in the club on the evenings. We also went on the golden hind full scale replica and he has been doing 'garrr noises all the time.
Ive got a couple of pictures to share with you. One is the last day of nursery. So cute, you can also see how his thumbs are affected by the hypermobility on this one. I also have one of him enjoying the beach. As always thanks for reading and checking in on us.
Wednesday 11 July 2012
The big reunion
Hi all
Well it was the big reunion on Monday of Jack and his K-M. I wasn't sure in the morning how much he understood of where we were going.
I was stood behind him when he saw her for the first time but he ran as fast as he could and sort of scooped her into his arms. It was one of the cutest things Ive ever seen in my life.
They spent the entire day playing together, most of the time on the bouncy castle. I have never seen a bond like it between 2 children of the ages they are and especially given their chromosome abnormalities. K-M has an equally unique abnormality, so this makes them a very special little 'couple'.
Whenever they walk past each other they stroke the others arm or touch their back and they really do seem that they fully understand each other. K-M seems to be able to understand what Jack needs and can speak for him at times. It really is quite an emotional and wonderful thing to sit and watch.
Jack also went to spend an hour at his new school yesterday. He was very shy a first but soon turned the charm on everyone that spoke to him. Each child from the unit is assigned a reception class that they will go to for any lessons or times that they feel they are able to. They told me yesterday that they have assigned Jack to K-M's reception class and her classroom support will be able to offer support to Jack too. They seem to realise that the bond they have is quite extraordinary and they will use it to settle them both into their new school.
I hope you enjoy looking at the pictures as much as I do. :)
Well it was the big reunion on Monday of Jack and his K-M. I wasn't sure in the morning how much he understood of where we were going.
I was stood behind him when he saw her for the first time but he ran as fast as he could and sort of scooped her into his arms. It was one of the cutest things Ive ever seen in my life.
They spent the entire day playing together, most of the time on the bouncy castle. I have never seen a bond like it between 2 children of the ages they are and especially given their chromosome abnormalities. K-M has an equally unique abnormality, so this makes them a very special little 'couple'.
Whenever they walk past each other they stroke the others arm or touch their back and they really do seem that they fully understand each other. K-M seems to be able to understand what Jack needs and can speak for him at times. It really is quite an emotional and wonderful thing to sit and watch.
Jack also went to spend an hour at his new school yesterday. He was very shy a first but soon turned the charm on everyone that spoke to him. Each child from the unit is assigned a reception class that they will go to for any lessons or times that they feel they are able to. They told me yesterday that they have assigned Jack to K-M's reception class and her classroom support will be able to offer support to Jack too. They seem to realise that the bond they have is quite extraordinary and they will use it to settle them both into their new school.
I hope you enjoy looking at the pictures as much as I do. :)
Thursday 5 July 2012
EEG
Just a real quickie here to tell you that we have had Jacks EEG now. He was a little star throughout. He had to just sit and relax and watch tv and then she asked him to do different things at intervals. He had to close his eyes whilst she counted to 10 which was hilarious as he had a big smile on his face and was peeping the entire time! Then he had to blow a windmill for a while which again was funny as this child just has no puff for things like that, at one point he looked as if his head would explode. Then the bit I didnt like was when they had to flash lights into his eyes. He thought it was funny though!
Whilst we were there he did appear to have a couple of the vacant episodes so at least if it comes back clear I know that its just a behaviour of Jacks and then if they find something then I'll know its not just me picking at every sign of everything. Its so hard to know when to be worried and when not to be with Jack.
Jack had his birthday as well. he absolutely LOVED it, everything about the whole day. He looked amazed all the time. We took the children out to eat and his little face was so funny when the lights went off and they brought his cake out and sang happy birthday to him. I have a couple of photos to share of the small dude from his birthday. He is so proud of his little England kit. He really does love football!
Another quick line before I go. We are off to have a reunion with his K-M on Monday so I promise to update and blog about that and hopefully get permission from her mum to share a picture of the happy couple.
Until Monday then, thank you for reading :)
Whilst we were there he did appear to have a couple of the vacant episodes so at least if it comes back clear I know that its just a behaviour of Jacks and then if they find something then I'll know its not just me picking at every sign of everything. Its so hard to know when to be worried and when not to be with Jack.
Jack had his birthday as well. he absolutely LOVED it, everything about the whole day. He looked amazed all the time. We took the children out to eat and his little face was so funny when the lights went off and they brought his cake out and sang happy birthday to him. I have a couple of photos to share of the small dude from his birthday. He is so proud of his little England kit. He really does love football!
Another quick line before I go. We are off to have a reunion with his K-M on Monday so I promise to update and blog about that and hopefully get permission from her mum to share a picture of the happy couple.
Until Monday then, thank you for reading :)
Wednesday 13 June 2012
Slacking again............
Why break the habit of a lifetime and blog when I should....so I say as I do each post. I am sorry for my terrible lack of posts.
Where to begin?!
I will start with the latest 'worry' that we have been having. Jack has been having a few strange little episodes for the last month I would say. Going back there has been times where I have mentioned to people that I haven't thought his eyes have looked quite right so actually this has probably been going on for a while longer. He is sometimes exceptionally hard to wake up in the morning. You have to physically lift him to rouse him and then it takes him ages to come round. The one particular morning I was due to visit my sister so had got him up to get everything ready before we dropped the other children at school, he just didn't look himself at all when he came round. Other than saying that I really don't know how to explain it. He didn't look like he was with us at all. I kept asking him to speak to me to make sure he was OK. We then started to walk to school and all of a sudden one of his nostrils started to bleed for no reason. It was very watery blood as well. I wiped it away and we carried on walking. Jack has a buggy board to stand on and though he does like it, he really does enjoy walking. I asked him if he wanted to get down and he said yes but when his feet hit the floor his legs wouldn't move. He spent the next hour very teary and then BAM he snapped out of it.
He has had a few more of these just lately. Not to that extreme but occasionally spending over an hour just whinging or having a burst of being naughty that doesn't quite seem normal really. He had an appointment with his paediatrician on Friday and they have referred him for an EEG done. We are just waiting on the appointment coming through for that now.
Since they are finding nothing physically wrong with his legs, I am starting to wonder whether maybe they are connected.
On to some good news. He is coming on so so well with his understanding of things. This will probably seem like such a small thing to people that have a child developing at an average speed but it made me almost cry when he sad it. He went to a birthday party on Sunday and he was given a piece of cake in his party bag. He was eating it when he got home and I asked him how it was. He replied with "nice". Like I say this is such a small thing normally but for him to say nice anyway is amazing but for him to be able to say it in the context it was needed and for him to be able to tell me that he is enjoying something is just the most rewarding feeling. I just cant explain how proud I am everyday of how well he is coming on.
I'm not sure whether I have mentioned anywhere in this blog that Jack made a very special friend at nursery, K-M, he absolutely adored her but she left. We have spoken of her everyday since then and he would show me his sad face. Through a mutual friend I have come into contact with her mum!! It absolutely made my day and certainly made Jacks when he received a video from her! It has to be the cutest thing that I have ever seen in my life. Both the video of her and Jacks reaction to it. He watches it over and over every single day and each day he says hi back to her and blows kisses. More importantly their love is to be fully rekindled as they have got a place at the same primary school!! Could true love blossom at such an early age??? Watch this space....;0)
Where to begin?!
I will start with the latest 'worry' that we have been having. Jack has been having a few strange little episodes for the last month I would say. Going back there has been times where I have mentioned to people that I haven't thought his eyes have looked quite right so actually this has probably been going on for a while longer. He is sometimes exceptionally hard to wake up in the morning. You have to physically lift him to rouse him and then it takes him ages to come round. The one particular morning I was due to visit my sister so had got him up to get everything ready before we dropped the other children at school, he just didn't look himself at all when he came round. Other than saying that I really don't know how to explain it. He didn't look like he was with us at all. I kept asking him to speak to me to make sure he was OK. We then started to walk to school and all of a sudden one of his nostrils started to bleed for no reason. It was very watery blood as well. I wiped it away and we carried on walking. Jack has a buggy board to stand on and though he does like it, he really does enjoy walking. I asked him if he wanted to get down and he said yes but when his feet hit the floor his legs wouldn't move. He spent the next hour very teary and then BAM he snapped out of it.
He has had a few more of these just lately. Not to that extreme but occasionally spending over an hour just whinging or having a burst of being naughty that doesn't quite seem normal really. He had an appointment with his paediatrician on Friday and they have referred him for an EEG done. We are just waiting on the appointment coming through for that now.
Since they are finding nothing physically wrong with his legs, I am starting to wonder whether maybe they are connected.
On to some good news. He is coming on so so well with his understanding of things. This will probably seem like such a small thing to people that have a child developing at an average speed but it made me almost cry when he sad it. He went to a birthday party on Sunday and he was given a piece of cake in his party bag. He was eating it when he got home and I asked him how it was. He replied with "nice". Like I say this is such a small thing normally but for him to say nice anyway is amazing but for him to be able to say it in the context it was needed and for him to be able to tell me that he is enjoying something is just the most rewarding feeling. I just cant explain how proud I am everyday of how well he is coming on.
I'm not sure whether I have mentioned anywhere in this blog that Jack made a very special friend at nursery, K-M, he absolutely adored her but she left. We have spoken of her everyday since then and he would show me his sad face. Through a mutual friend I have come into contact with her mum!! It absolutely made my day and certainly made Jacks when he received a video from her! It has to be the cutest thing that I have ever seen in my life. Both the video of her and Jacks reaction to it. He watches it over and over every single day and each day he says hi back to her and blows kisses. More importantly their love is to be fully rekindled as they have got a place at the same primary school!! Could true love blossom at such an early age??? Watch this space....;0)
Tuesday 3 April 2012
So do you ever feel like............
I just feel like I need to get a couple of things off my chest and I always feel like this is probably the best place to do it. Even if nobody reads it just writing it down sometimes helps.
I'm feeling so horribly stressed and not quite myself at the moment. I think I'm just having one of those times where everything gets on top of you so much that your head whirs a bit and you feel a bit distant from the world.
The whole school thing with Jack is really hard, am I making the right choices? Am I being over protective of him? Will he be happy? I could just go on and on with the questions. I'm sure I will be a complete nervous wreck by the time we get to September. I just need to keep telling myself that i went through these exact same emotions last September when he started at nursery and I still cant quite believe the progress he has made since he did!
I'm having a hard time with my eldest at times as well just lately. Shes just going through the normal teenage hormones and rebellious times. Its so hard though. I knew it would be difficult but I don't think anything can actually prepare you for it. I think you always see them as your little baby and therefore you always feel like the behaviour is abnormal as they are too young. When you sit down rationally and think about it though you can cast your mind back to when you went through the same stage. i clearly remember knowing everything back then!
I did think I was going to have some form of breakdown on Thursday though and even pulled my own hair. Stupid eh?
Shes been great since then and I'm just hoping for my own sanity that we get at least a week of it ;0)
I think with regards the driving I'm putting a lot of pressure on myself that is just silly. I was in a real state of nerves this morning before my lesson. To the point I felt like I was probably going to vomit! I'm hoping that by next Tuesday this will be better though as I really enjoyed myself today. I feel like I did do well even though I made a couple of mistakes. I'm sure everyone does.
I take Jack to bed at night and he lays in his bed and I sit on the floor next to him and we talk. I ask him things and we do some words to see what he can say as I have his full attention. Ive been doing this for ages with him. Usually this makes me smile as he is so funny but at the moment I look at him lay there and I actually feel like my heart is broken. I feel like my body did something wrong with him. Almost like a little.....I'm going to say punishment though really this isn't the right word as I could never view him like that, he is far too special and beautiful, as I wanted a son so intensely and would have been disappointed with another girl. I know how selfish and dreadful that sounds when there are people near and dear to me that have struggled to have children. I know all this probably sounds really dramatic and silly but its just the way my head is making me see things at the moment. I'm sure that I will be back to myself soon.
I'm feeling so horribly stressed and not quite myself at the moment. I think I'm just having one of those times where everything gets on top of you so much that your head whirs a bit and you feel a bit distant from the world.
The whole school thing with Jack is really hard, am I making the right choices? Am I being over protective of him? Will he be happy? I could just go on and on with the questions. I'm sure I will be a complete nervous wreck by the time we get to September. I just need to keep telling myself that i went through these exact same emotions last September when he started at nursery and I still cant quite believe the progress he has made since he did!
I'm having a hard time with my eldest at times as well just lately. Shes just going through the normal teenage hormones and rebellious times. Its so hard though. I knew it would be difficult but I don't think anything can actually prepare you for it. I think you always see them as your little baby and therefore you always feel like the behaviour is abnormal as they are too young. When you sit down rationally and think about it though you can cast your mind back to when you went through the same stage. i clearly remember knowing everything back then!
I did think I was going to have some form of breakdown on Thursday though and even pulled my own hair. Stupid eh?
Shes been great since then and I'm just hoping for my own sanity that we get at least a week of it ;0)
I think with regards the driving I'm putting a lot of pressure on myself that is just silly. I was in a real state of nerves this morning before my lesson. To the point I felt like I was probably going to vomit! I'm hoping that by next Tuesday this will be better though as I really enjoyed myself today. I feel like I did do well even though I made a couple of mistakes. I'm sure everyone does.
I take Jack to bed at night and he lays in his bed and I sit on the floor next to him and we talk. I ask him things and we do some words to see what he can say as I have his full attention. Ive been doing this for ages with him. Usually this makes me smile as he is so funny but at the moment I look at him lay there and I actually feel like my heart is broken. I feel like my body did something wrong with him. Almost like a little.....I'm going to say punishment though really this isn't the right word as I could never view him like that, he is far too special and beautiful, as I wanted a son so intensely and would have been disappointed with another girl. I know how selfish and dreadful that sounds when there are people near and dear to me that have struggled to have children. I know all this probably sounds really dramatic and silly but its just the way my head is making me see things at the moment. I'm sure that I will be back to myself soon.
Saturday 31 March 2012
Bit about me!!!
Just going to write a short bit about ME!
Well it is for Jack as well so I'm sure its allowed ;) The family fund awarded me a grant so that I could start my driving lessons to help with getting Jack to and from all the appointments and things that he needs. Ive had my first one now. I had to do a 2 hour lesson and then I had to sit my theory test before they would release anymore funds. The first lesson didn't go as well as I wanted it too I was quite disappointed at myself when I got in. I stalled a couple of times and just didn't feel like I did very well really. It turned out that I wasn't very well though so I'm hoping that the next one goes better. My instructor seems very nice though which at this stage is the main thing really.
I sat my theory test last week. Didn't feel confident at all about the hazard perception clips and then on one of them it said I would get zero points as I clicked an unacceptable amount of times. I really thought that would I failed but as it was I PASSED!! So I have my next lesson on Tuesday morning. Fingers crossed I feel better about it all when I get in after this lesson.
Well it is for Jack as well so I'm sure its allowed ;) The family fund awarded me a grant so that I could start my driving lessons to help with getting Jack to and from all the appointments and things that he needs. Ive had my first one now. I had to do a 2 hour lesson and then I had to sit my theory test before they would release anymore funds. The first lesson didn't go as well as I wanted it too I was quite disappointed at myself when I got in. I stalled a couple of times and just didn't feel like I did very well really. It turned out that I wasn't very well though so I'm hoping that the next one goes better. My instructor seems very nice though which at this stage is the main thing really.
I sat my theory test last week. Didn't feel confident at all about the hazard perception clips and then on one of them it said I would get zero points as I clicked an unacceptable amount of times. I really thought that would I failed but as it was I PASSED!! So I have my next lesson on Tuesday morning. Fingers crossed I feel better about it all when I get in after this lesson.
Reception in September
Good evening all,
Havent written in a while and I really should have so I do apologise for my lack of updates. Its been quite a tough time of late with trying to juggle having Jack, a teenager, the other kids and also fit in my driving as well. Bit of an emotional rollercoaster going on.
Anyway I didn't realise just how difficult it would be to try and find the right place for Jack to go to school in September. There are so many things to consider when you send any of your children to school but when you have a child with additional needs it is even harder. Jack being the complex little man that he is makes it hard to know exactly which side to go for. Do you go for a mainstream place with help for him? Or a resourced place? Or a fully specialised school? Really is a hard choice and there seems to be such a shortage of these places available as well. We have been to see both sides of the fence and we do feel that Jack benefits so much from having the mainstream children around him but also having a smaller group as well. We have seen a school that we can really picture him in. The staff were fantastic with him and he seemed to really take to them as well which of course puts us at ease. It has the added benefit of being close to Jacks Nana as well which means that should there be any sort of emergency he has a family member close by.
We have had an email from the town hall to say they will try to accommodate our request so fingers crossed that we get some good news very soon.
Havent written in a while and I really should have so I do apologise for my lack of updates. Its been quite a tough time of late with trying to juggle having Jack, a teenager, the other kids and also fit in my driving as well. Bit of an emotional rollercoaster going on.
Anyway I didn't realise just how difficult it would be to try and find the right place for Jack to go to school in September. There are so many things to consider when you send any of your children to school but when you have a child with additional needs it is even harder. Jack being the complex little man that he is makes it hard to know exactly which side to go for. Do you go for a mainstream place with help for him? Or a resourced place? Or a fully specialised school? Really is a hard choice and there seems to be such a shortage of these places available as well. We have been to see both sides of the fence and we do feel that Jack benefits so much from having the mainstream children around him but also having a smaller group as well. We have seen a school that we can really picture him in. The staff were fantastic with him and he seemed to really take to them as well which of course puts us at ease. It has the added benefit of being close to Jacks Nana as well which means that should there be any sort of emergency he has a family member close by.
We have had an email from the town hall to say they will try to accommodate our request so fingers crossed that we get some good news very soon.
Tuesday 6 March 2012
World Book Day
Well it was world book day last week and the nursery celebrated with a fancy dress nursery session. They had to go dressed as a magical book character. We sent Jack in wearing a dragon costume and he looked ever so cute. He waited for his Grandad at the front gate so that he could RARRRRR at him when he came. He has got really into dragons and dinosaurs again at the moment. I bought him a dinosaur encyclopedia last time he went through a dino stage but he was a bit too young for it. I came across it the other day whilst cleaning and he absolutely loves it! T-rex is his favourite.
I think you will agree that he makes a pretty gorgeous dragon :)
I think you will agree that he makes a pretty gorgeous dragon :)
Thursday 16 February 2012
Chat Chat Chatter Chatter
Jacks speech is just coming on in total leaps and bounds! There was a point where I honestly hand on heart, didnt think he would ever learn to talk. He just wouldnt even attempt it.
Its still small baby steps and lots of it is more a sound than a word but the sound is right :) He repeats the whole alphabet after you now and will pretty much attempt anything that you ask him to say.
We saw his speech therapist who was really impressed with how far he has come since she saw him last time and is going to back off him a little whilst he goes through this spell as we dont want to push him too hard and have him take a step backwards.
At the moment the main thing I have found I have needed whilst raising Jack is PATIENCE. I dont mean this is a sense that I could lose my temper with him or anything but more in a sense that everything that he has learnt so far and will learn in the future takes time. Every baby step that he takes in everything he does is a little miracle really because there is no documentation on this condition, so nobody really knows what to expect in the future.
My favourite thing he has said so far today is 'Hi Baboo' That one never ever gets old :)
Its still small baby steps and lots of it is more a sound than a word but the sound is right :) He repeats the whole alphabet after you now and will pretty much attempt anything that you ask him to say.
We saw his speech therapist who was really impressed with how far he has come since she saw him last time and is going to back off him a little whilst he goes through this spell as we dont want to push him too hard and have him take a step backwards.
At the moment the main thing I have found I have needed whilst raising Jack is PATIENCE. I dont mean this is a sense that I could lose my temper with him or anything but more in a sense that everything that he has learnt so far and will learn in the future takes time. Every baby step that he takes in everything he does is a little miracle really because there is no documentation on this condition, so nobody really knows what to expect in the future.
My favourite thing he has said so far today is 'Hi Baboo' That one never ever gets old :)
Wednesday 15 February 2012
Finally in the new house!
Hello all,
Sorry its been so long again since I last updated but we have had no internet. Its been a nightmare. Funny how quickly you come to rely on the net once you have it.
Since I last wrote I have had a letter to say that they 'think' that Jack has type 2b Von Willebrands. Still waiting on another appointment to go and see haematology. Speaking to another one of the monosomy mums and she is going through the same thing with her little man. I'm hoping that we can get these genetics and haematology departments to speak as I think it will make it much easier on everyone.
We had our appointment to have his legs looked at and we haven't been very satisfied with how it went. He had a feel of his knees and said they felt OK other than a bit of hyper mobility. He watched him walk and said he flicks one of his legs out to the side but that could just be his gait! They x ray ed his hips . Not too sure why when they didn't do his legs. When we go and see our genetics guy we are going to ask him to refer us to the hospital he works from for a second opinion. Ive had enough children to know that the amount of times Jack falls and the pain he gets from time to time ISN'T normal.
We are finally in the new house and its just perfect for us all. The first time we took Jack out into the garden he screamed. He was so excited. Cant wait to see him playing out there when the weather warms up a little. Its a stunning garden and has plenty of flat ground for him but also plenty of little steps and things for him to build his muscles up a bit.
Sorry its been so long again since I last updated but we have had no internet. Its been a nightmare. Funny how quickly you come to rely on the net once you have it.
Since I last wrote I have had a letter to say that they 'think' that Jack has type 2b Von Willebrands. Still waiting on another appointment to go and see haematology. Speaking to another one of the monosomy mums and she is going through the same thing with her little man. I'm hoping that we can get these genetics and haematology departments to speak as I think it will make it much easier on everyone.
We had our appointment to have his legs looked at and we haven't been very satisfied with how it went. He had a feel of his knees and said they felt OK other than a bit of hyper mobility. He watched him walk and said he flicks one of his legs out to the side but that could just be his gait! They x ray ed his hips . Not too sure why when they didn't do his legs. When we go and see our genetics guy we are going to ask him to refer us to the hospital he works from for a second opinion. Ive had enough children to know that the amount of times Jack falls and the pain he gets from time to time ISN'T normal.
We are finally in the new house and its just perfect for us all. The first time we took Jack out into the garden he screamed. He was so excited. Cant wait to see him playing out there when the weather warms up a little. Its a stunning garden and has plenty of flat ground for him but also plenty of little steps and things for him to build his muscles up a bit.
Tuesday 17 January 2012
"I do talk to you"
I was sent this verse by another mummy with a special little man as she thought it was fitting to Jack. She was right, its absolutely perfect!
"I Do Talk To You"
I know you can’t hear me....but I do talk to you.
And I hear everything you say to me too.
I hear when you laugh, when I do something funny.
I hear you yell "Hooray" when I try so hard.
I hear you tell others how you’d never trade me for the world even with all the trials I came with.
I hear you thank God for what a blessing you have been given.
I hear you encourage me when I can almost do it.
I hear you cry, too, when it gets a little harder
And when you ask God "Why?!" your baby.
And I know you know I understand somehow.
And you know I listen when you talk to me too.
But, I want you to know, mom...........
I do talk to you.
Jessica Soukup 1998
"I Do Talk To You"
I know you can’t hear me....but I do talk to you.
And I hear everything you say to me too.
I hear when you laugh, when I do something funny.
I hear you yell "Hooray" when I try so hard.
I hear you tell others how you’d never trade me for the world even with all the trials I came with.
I hear you thank God for what a blessing you have been given.
I hear you encourage me when I can almost do it.
I hear you cry, too, when it gets a little harder
And when you ask God "Why?!" your baby.
And I know you know I understand somehow.
And you know I listen when you talk to me too.
But, I want you to know, mom...........
I do talk to you.
Jessica Soukup 1998
Thursday 12 January 2012
Long time, no type!
Hello everyone,
Sorry I haven't got round to writing to you all for a while. Its been hectic with Christmas and then getting the kids back at school. Just to keep ourselves busy we are moving house as well. Well we don't like to keep things stale!
Alot has been happening with my boy since we last 'spoke'. We have had his test results back now and he has finally had the Von Willebrands disease confirmed. He has type 1. They have also said that his platelet count is very low as well which is not symptomatic of type 1 so yet more testing coming up for him :o(
Since the last time I updated Ive had a very lovely lady contact me and put me in touch with some other lovely people who's children have the Mosaic Monosomy 21 as well! It feels great to be able to discuss little things that we have found with Jack and find what their special people do as well. They definitely are a very special bunch of children. It can occasionally be quite scary as well though as there are things you find that haven't been discussed with you that have been discussed with others etc. Have called our genetics team and we are waiting on an appointment to go and chat about these other families and their children.
Jack also seems to be having more and more trouble with his legs. His falling has got quite bad again and he awoke twice in the night crying, rolling round and holding his knees. We have an appointment to see someone about his legs on the 8th of Feb so I will update you all then as to what they say.
He has taken SOOOO much to his little sister now and calls her Baboo which is just one of the cutest little things. His speech is still taking baby steps forward which is wonderful to see and he seems so proud when he says something that people can understand. The frustration that he must feel sometimes when he is trying to tell you something and you don't know what he means. Though bless him he never ever lets it get to him. We have to feel proud for that as we are obviously doing something right with him.
Me and my boy at christmas x
Sorry I haven't got round to writing to you all for a while. Its been hectic with Christmas and then getting the kids back at school. Just to keep ourselves busy we are moving house as well. Well we don't like to keep things stale!
Alot has been happening with my boy since we last 'spoke'. We have had his test results back now and he has finally had the Von Willebrands disease confirmed. He has type 1. They have also said that his platelet count is very low as well which is not symptomatic of type 1 so yet more testing coming up for him :o(
Since the last time I updated Ive had a very lovely lady contact me and put me in touch with some other lovely people who's children have the Mosaic Monosomy 21 as well! It feels great to be able to discuss little things that we have found with Jack and find what their special people do as well. They definitely are a very special bunch of children. It can occasionally be quite scary as well though as there are things you find that haven't been discussed with you that have been discussed with others etc. Have called our genetics team and we are waiting on an appointment to go and chat about these other families and their children.
Jack also seems to be having more and more trouble with his legs. His falling has got quite bad again and he awoke twice in the night crying, rolling round and holding his knees. We have an appointment to see someone about his legs on the 8th of Feb so I will update you all then as to what they say.
He has taken SOOOO much to his little sister now and calls her Baboo which is just one of the cutest little things. His speech is still taking baby steps forward which is wonderful to see and he seems so proud when he says something that people can understand. The frustration that he must feel sometimes when he is trying to tell you something and you don't know what he means. Though bless him he never ever lets it get to him. We have to feel proud for that as we are obviously doing something right with him.
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