hiya, we haven't got the results yet, I think it must take a while but we are back to the hosp on 10th for anothere clinic appt so might ask if they've heard anything then.
It wasn't that great for Paul, he didn't like the monitors he was wired up like you wouldn't believe and wouldn't keep the nasal canular in at all, I managed to get it in while he was asleep but if he moved it would wake him up, he'd freak out and pull in out anyway, so for 8 hours of monitoring I think he had it in for an hour as I gave up about midnight and went to sleep as I just kept waking him up
so we'll see but actually he had a very good night, not too noisy and not much snoring so not sure how much they'll get from that really, he has much more problems when he's poorly obviously and actually is a bit better now I've gioven him a pillow
anyway hopefully they will just get a better picture of his habbits, he did have some pauses in breathing but hopefully these will just be the normal pauses we all can have who knows
Hi, good to hear from you Charlotte, sorry not been on , we have been away for a week, During that week, Isaac seems to have gone backwards, he was starting to come downstairs forwards by himself but seems to have forgotton how over that week, still at least I know he can do it so I'm sure he will do it again. Good to hear that Lydia is getting on well with the horse riding and potty training is going well. Isaac is finally potty trained but he will not go to the toilet for anybody other than me, which is a bit of a problem when he is at nursery all day.
Chriss, glad the sleep study is over, it can't have been nice to do. Isaac has an OT assessment on Weds so I will update you on that.
Quick update on the OT assessment, finally I feel like we are starting to get somewhere, they agreed he has poor muscle tone and weak core stability which is why he tires easily and has problems with stairs etc, he also has visual and auditory processing disorders, which complicates the problems caused by his hypermobility and poor muscle tone, they have measured him up to have a stair rail fitted on the other side of the stairs at his height and this should help, they have also given me some sensory execises to do and suggested coping strategies, they asked if me and hubby would like to go to a conference talk on sensory processing disorders to help us understand that aspect of him. The only negative point (and its not really negative its just me) is that they are referring him to childrens wheelchair services to get him a more size appropriate buggy, I did feel like crying when they said that but I know its for the best to help him.
That sounds great Hayley1 the OT assessment if done fully is very proactive in helping with day to day things. We have had 2 handrails fitted and we also had a referral to wheelchair services and have a Maclaren Major which is probably what you'll get as it can take a child up to 8 stone. They are big but easy to push and give good postural support. I actually requested that referral as I was struggling with our standad buggy as they are just not made for older children. the only disadvantage for us is that it doesn't recline. Wheelchair services aren't all about wheelchairs they deal with all different mobility issues and are generally very helpful although I understand what you mean about the thought of it, I tried to just be as positive about it as possible, I knew I needed something else and Paul has never sat in his buggy without slumping over to the side.
I hope the referral goes well, you may have to chase it, we did. Stay positive, you have an amazing little boy and thats never going to change no matter what adaptations or equipment you need.
Thanks Chriss, I half expected them to refer him, it is just a shock to hear it said. I know it is going to be best for him, he still really needs the buggy and I am forever getting comments about how he is too big to be in a buggy, at least if we get the maclaren major (which is what they were suggesting) it will be more obvious there is a problem so maybe people wont feel the need to comment. Hope you and Paul are well and enjoying the summer xxxx
Ahh yes I know, even though I thought I was taking everything in my stride with Paul, at the beginning I really was downplaying everything, I'm only really now appreciating the severity and extent of the condition and looking back I probably just didn't want to believe it really but hey ho
I think that was one of the reasons I wanted something from Wheelchair services although Paul is still quite small obviously he's growing and is going to need extra support for a good while yet, I'm not bothered about what other people think really but I did wonder that it would take away that initial lazy boy comment
Just had Isaacs stair rail fitted today, felt a bit sad as it really is like finally admitting to myself that there really is a problem and its not in my head he doesnt like it anyway and is still coming downstairs backwards, just got my head round that and I have just had a call to say they are delivering his major buggy tomorrow, now I really do feel like crying, I knew he was getting one, but now its coming it feels a lot more real
Don't feel sad about the handrail, ours was fitted yesterday too, the man phoned in the morning and was with us at 1pm. Lydia loves it as it is just her height and she can get her hands around it which you can't with my original rail.
We are still okay with Lydia's Quinny Zapp pushchair, that is one saving grace with her being so petite but I know it will only be a matter of time when we'll have to face facts and get another pushchair. OH and I were hoping to try for a second baby but it doesn't seem to be working out (I miscarried just over three months ago and still can't seem to fall pregnant again, maybe something telling me I need to devote myself to Liddy). I have incredible moments of doubt, sadness and then joy when I look at her, she really is the most amazing little thing and I still don't know if a sibling for her is the right thing to be doing. So many questions........... The best thing is, she is now dry during the day time which is amazing as the consultant didn't know whether she had enough control 'down there' so we are of course thrilled about it! Hayley 1 try to keep your chin up, the pushchair is far better than carrying, that wouldn't be doing you any favours. The stairs may take some time but just remember when he couldn't get up them at all, at least he can do it somehow now. C
Hi Charlotte, so sorry about your m/c that really sucks, I had 2 miscarriages before my 3rd child was born, it really knocks you for 6 when it happens, I was advised to wait 6 months after my m/c as it can take a while for your body to fully recover, although saying that some dr advise that you can try straight away.
Well I figured out why he doesnt like the handrail, they have put it at the wrong height, it is so low down that he has to bend right down to reach it, what height is yours at, the OT measured Isaac at his appointment and said she would get it fitted at his height, but it is fitted 28cm above the stair which seems really low, it looks like its waiting to have a stannah stair lift fitted onto it, phoned them up and they are going to come back and re fit it when Isaac is here so they can check the height against him, I feel awful because the man who fitted it was so lovely.
The buggy arrived this morning and it took all day before I could bring myself to put it together, I finally did it and sat Isaac in it, tomorrow I have decided I will take him for a walk in it, I think once I have done it once I will be fine, I think it is just that it is so obviously a special needs buggy so now it will be obvious (that sounds really silly)
Fab news that Lydia is now dry in the day woohoo, that must be such a relief, Isaac is dry in the day too but not yet at night, I will tackle that at a later date, the only thing with him is, that if we are out and he doesnt like the toilets because they are 'wrong' then he refuses to use them, he also doesnt like the toilets at nursery so he will hold it in all day until he is bursting then he will have an accident, becuase he does hold it in he has just had an infection, the dr told me I have to tell him to go to the toilet, like I dont try.
Good luck with trying for a baby, really hope it works out for you, I'm sure Lydia will be fine with a brother or sister, Isaac has 2 sisters and 1 brother and if anything, they bring him on loads.
Hayley1 - sounds like its all closing in on you a bit, you know you'll get through it but its just not great processing these feelings is it? Once he gets used to his buggy he'll love it, and you'll love it too honestly it is so easy to push (apart from on gravel or cobbles grr) Paul likes his as he is higher up and can reach the button for the crossings haha. Only trouble is I can't use it if I think he's going to fall asleep (which ismost of the time) as it doesn't recline and his posture is so poor in the major when sleeping so i just use my silvercross pop, but I can hardly push this now. Shame about your hand rail, the bloke we had was lovely and actually diregarded the measured height OT had given him and told me what the normal height was and it's great, quite high but its much easier for him to reach up, than try and bend down.
Charlotte, I'm so sorry to hear about your MC, seems like we're having the same sorts of feelings about extending the family. We're ttc at the moment but trying to keep it relaxed so none of the obsession like last time. I think a younger sibling would be great for out Paul its more how I will cope that worries me (selfish haha) especially if the next baby has the same condition, not quite sure how that will pan out but at least I know I can deal with anything after the last few years. Glad to hear Liddy is dry in the day, we're going through potty training at the moment and he's doing fab, but can't push down or pull up clothing so has some accidents because he's just sat of the potty clothed. He has had loads of dry nights too but thi nk this is just luck at the moment.
We were back at Alder Hey earlier this month and I pretty much got urged to let them know a bit more about day to day things. the Neuro is so so nice and very diplamatic but she was again really having to stress to me the significance of his condition and the risks to him becasue they don't know what it is yet. I was telling them about one morning when he wouldn't wake up very well and then couldn't swallow his toast, I know he's just having a bad day, kept him off nursery for the morning and took him in when he'd brightened up. Actually I now need to let them know in case they want him to be admitted for monitoring makes me realise how much I play everything down to just try and get on day to day, don't get me wrong if i thought he was in danger I'd take him to hops but I know I can deal with things (my mum has the same affliction) anyway they also said they don't want him to have any more anasthetic at our local hops we have to go to Alder Hey which is fine I don't mind just worries me. He's got to have grommetts fitted again as the last one came out and the glue ear is back with avengence, so I think this will be a very long process as I've had to get them to refer us to Alder Hey now instead, so I'll prob have to wait for an appt then for the procedure. his hearing is quite poor although we don't notice all that much but I suppose we are used to it now
Oh I've rambled on a bit now but there just seems to be no end to everything. Glad you girls are here I'm not quite sure how I'd cope if I didn't have anyone who could relate.
Awww Chriss, it is such a worry, I guess we just get used to life the way it is, for me its not until I see families out with children without Isaacs problems that I realise how hard it is sometimes.
The hand rail has been refitted now and is just perfect, he still crawls upstairs but has started to walk down now holding both rails, very slowly and a bit wobbly, but definitely getting there, I took him out in the buggy yesterday and I have to admit I was feeling a bit sorry for myself, but then I took flowers to the cemetry for our baby girl who we lost at 16 weeks and it made me realise how lucky we really are, yes he has his problems, but he is here and healthy and more importantly he is loved and we wouldnt change him for the world. Funny really how one minute you can be feeling bad about something, then you can just pick yourself up, dust yourself down and get on with it.
True what you say Chriss, I dont know how I would gt by if I didnt have people who understood how I felt, thanks for being there both of you xxxx
I feel exactly the same, when I'm down I know I can come on here and chat to you both, it feels great to know you understand what we're going through. Our handrail is fitted at 50cm and she loves it. I'm not sure whether we might have to wait a bit til we ttc as my body just doesn't seem to know what it's doing, my head is all over the place.
So sorry to hear about the loss of your baby Hayley1, you have been through so much and its a credit to you that you are coping so so well with everything, we all have our moments don't we but like you say we dust ourselves off and carry on becaue we are fab mums who keep going for our children's sake. We are fab mums we can admit it haha I know in my darker moments I worry so deeply about things but one thing I know more than anything is, there is no one, not one person on this earth that can take care of my son better than I can and we all 3 of us fit that bill, that keeps me strong.
I love coming on here to see if you guys have updated, It is so so hard to have what we would class as a normal conversation about our kids with other friends or even family who don't deal with half the stuff we do, I know I can come on here and just talk openly.
Charlotte I know how you feel, I think we're on month 3 or 4 of trying but the last week I have been so exaused, I have been falling asleep on the couch whenever I've been out anywhere, I have been struggling to lift the kettle in the mornings and do my hair, I do worry about how on earth I'll cope being pregnant let alone with a new baby, I'm not letting it stop me though as time is ticking on for me I'll be 32 on Sunday (birthday plug haha) so don't want to leave it too long really
anyway stay strong girls and keep updating, x x x;\)
Replies
It wasn't that great for Paul, he didn't like the monitors he was wired up like you wouldn't believe and wouldn't keep the nasal canular in at all, I managed to get it in while he was asleep but if he moved it would wake him up, he'd freak out and pull in out anyway, so for 8 hours of monitoring I think he had it in for an hour as I gave up about midnight and went to sleep as I just kept waking him up
so we'll see but actually he had a very good night, not too noisy and not much snoring so not sure how much they'll get from that really, he has much more problems when he's poorly obviously and actually is a bit better now I've gioven him a pillow
anyway hopefully they will just get a better picture of his habbits, he did have some pauses in breathing but hopefully these will just be the normal pauses we all can have who knows
glad its over anyway, on to the next appointment
Chriss, glad the sleep study is over, it can't have been nice to do. Isaac has an OT assessment on Weds so I will update you on that.
Take care. H xxx
Hayley xx
Wheelchair services aren't all about wheelchairs they deal with all different mobility issues and are generally very helpful although I understand what you mean about the thought of it, I tried to just be as positive about it as possible, I knew I needed something else and Paul has never sat in his buggy without slumping over to the side.
I hope the referral goes well, you may have to chase it, we did. Stay positive, you have an amazing little boy and thats never going to change no matter what adaptations or equipment you need.
Much love x x x
I think that was one of the reasons I wanted something from Wheelchair services although Paul is still quite small obviously he's growing and is going to need extra support for a good while yet, I'm not bothered about what other people think really but I did wonder that it would take away that initial lazy boy comment
all fine here, hope you're all well too x x x
We are still okay with Lydia's Quinny Zapp pushchair, that is one saving grace with her being so petite but I know it will only be a matter of time when we'll have to face facts and get another pushchair. OH and I were hoping to try for a second baby but it doesn't seem to be working out (I miscarried just over three months ago and still can't seem to fall pregnant again, maybe something telling me I need to devote myself to Liddy). I have incredible moments of doubt, sadness and then joy when I look at her, she really is the most amazing little thing and I still don't know if a sibling for her is the right thing to be doing. So many questions........... The best thing is, she is now dry during the day time which is amazing as the consultant didn't know whether she had enough control 'down there' so we are of course thrilled about it! Hayley 1 try to keep your chin up, the pushchair is far better than carrying, that wouldn't be doing you any favours. The stairs may take some time but just remember when he couldn't get up them at all, at least he can do it somehow now.
C
Well I figured out why he doesnt like the handrail, they have put it at the wrong height, it is so low down that he has to bend right down to reach it, what height is yours at, the OT measured Isaac at his appointment and said she would get it fitted at his height, but it is fitted 28cm above the stair which seems really low, it looks like its waiting to have a stannah stair lift fitted onto it, phoned them up and they are going to come back and re fit it when Isaac is here so they can check the height against him, I feel awful because the man who fitted it was so lovely.
The buggy arrived this morning and it took all day before I could bring myself to put it together, I finally did it and sat Isaac in it, tomorrow I have decided I will take him for a walk in it, I think once I have done it once I will be fine, I think it is just that it is so obviously a special needs buggy so now it will be obvious (that sounds really silly)
Fab news that Lydia is now dry in the day woohoo, that must be such a relief, Isaac is dry in the day too but not yet at night, I will tackle that at a later date, the only thing with him is, that if we are out and he doesnt like the toilets because they are 'wrong' then he refuses to use them, he also doesnt like the toilets at nursery so he will hold it in all day until he is bursting then he will have an accident, becuase he does hold it in he has just had an infection, the dr told me I have to tell him to go to the toilet, like I dont try.
Good luck with trying for a baby, really hope it works out for you, I'm sure Lydia will be fine with a brother or sister, Isaac has 2 sisters and 1 brother and if anything, they bring him on loads.
Take care
H xxx
Charlotte, I'm so sorry to hear about your MC, seems like we're having the same sorts of feelings about extending the family. We're ttc at the moment but trying to keep it relaxed so none of the obsession like last time. I think a younger sibling would be great for out Paul its more how I will cope that worries me (selfish haha) especially if the next baby has the same condition, not quite sure how that will pan out but at least I know I can deal with anything after the last few years. Glad to hear Liddy is dry in the day, we're going through potty training at the moment and he's doing fab, but can't push down or pull up clothing so has some accidents because he's just sat of the potty clothed. He has had loads of dry nights too but thi nk this is just luck at the moment.
We were back at Alder Hey earlier this month and I pretty much got urged to let them know a bit more about day to day things. the Neuro is so so nice and very diplamatic but she was again really having to stress to me the significance of his condition and the risks to him becasue they don't know what it is yet. I was telling them about one morning when he wouldn't wake up very well and then couldn't swallow his toast, I know he's just having a bad day, kept him off nursery for the morning and took him in when he'd brightened up. Actually I now need to let them know in case they want him to be admitted for monitoring
Oh I've rambled on a bit now but there just seems to be no end to everything. Glad you girls are here I'm not quite sure how I'd cope if I didn't have anyone who could relate.
speak soon girls x x x
The hand rail has been refitted now and is just perfect, he still crawls upstairs but has started to walk down now holding both rails, very slowly and a bit wobbly, but definitely getting there, I took him out in the buggy yesterday and I have to admit I was feeling a bit sorry for myself, but then I took flowers to the cemetry for our baby girl who we lost at 16 weeks and it made me realise how lucky we really are, yes he has his problems, but he is here and healthy and more importantly he is loved and we wouldnt change him for the world. Funny really how one minute you can be feeling bad about something, then you can just pick yourself up, dust yourself down and get on with it.
True what you say Chriss, I dont know how I would gt by if I didnt have people who understood how I felt, thanks for being there both of you xxxx
I love coming on here to see if you guys have updated, It is so so hard to have what we would class as a normal conversation about our kids with other friends or even family who don't deal with half the stuff we do, I know I can come on here and just talk openly.
Charlotte I know how you feel, I think we're on month 3 or 4 of trying but the last week I have been so exaused, I have been falling asleep on the couch whenever I've been out anywhere, I have been struggling to lift the kettle in the mornings and do my hair, I do worry about how on earth I'll cope being pregnant let alone with a new baby, I'm not letting it stop me though as time is ticking on for me I'll be 32 on Sunday (birthday plug haha) so don't want to leave it too long really
anyway stay strong girls and keep updating, x x x;\)
Liddy had her nursery home visit yesterday afternoon which went really well. She starts next Monday, I just can't believe it!! Hope you are all well.