Hi all, quick update from me. Isaac's OT came out to visit him yesterday at home, she really is fantastic, she has said it is very obvious to her that he clearly has sensory problems which are complicated by the fact that he has the hypermobility, low muscle tone etc, she observed him going up and down stairs and said that the reason he has regressed is very possibly because he has had a growth spurt so he has to learn where his body is again, she gave us loads of fab advice and is going to get us a set of steps that have pull down handles at the side for the toilet as she thinks that the reason he wont use the toilet is because his feet are not grounded and he doesnt feel safe (he was toilet trained but that has regressed now too), she is also going to get him a breezi chair, which is apparantly like a highchair but it has a seat and a footplate so when he sits at the table his feet will always be grounded. she has shown me how to do deep pressure massage on him and said she is going to speak to his paed and tell him that in her opinion he needs to be kept under review.
Phil and I are going on a sensory talk in October and the OT is going to review Isaac again in January, from there she is going to go into the school he will be going to next September and start putting things in place to help with the transition, she said that if equipment needs to adapted for him then she will make sure it is done by the time he starts. Finally I feel like someone is taking my concerns seriously at last, and despite the early support teacher saying that he doesnt need a statement, she seems to think that he does, and if they dont agree to the statement then at the very least he needs an IEP in place now so it can carry up with him when he starts.
That sounds great, I know the OT would see it all like that. I really do think that your Paed held back on these referrals for far too long in the vain hope that he was going to find the main issues rather than specialists in other fields.
I am so so glad you have this help now, they are very good at getting things in place for nursery/school by the time they go and they can be quite pushy too (ours is) and the nursery staff in our case tend to just jump to tune. Issaac will get all the help he needs now whether you find out the route of the problems or not. the toilet step sounds great and we have a Breezi too, he has one in nursery which is a mini version so it fits to the little tables there. The breezi is big but very good and without the tray it just fits under the table so he'll be able to sit at the table just as normal.
We have been mad busy here, Pete is working again which is great and he's gone from only being offered 4 weeks work to being offered the Foreman's job so he is hardly home at the moment but feels its worthwhile which it is I'm so proud of him.
I've been mad busy too and not too well, still not really think I should probably go the Dr as I think I've got a chest infection rather than just an annoying cough but I never then to bother. Missed an eye appt for Paul too first one I've forgotten anyway so just re-booked. Also now booked in for grommetts surgery and possibly adanoids removed too if they are causing problems, thought we would have to have an appointment as we'd been going to the local hosp but I'm not allowed to let our Paul have any more anasthetic there so got referred to childrens hospital instead. that's the beginning of November so something to phsyc myself up for anyway.
Also going for review with Speech and Language and nutricionalist regarding feeding issues. He's been pretty bad this week too had a few choking problems, might have to give his Neuro a call Monday Morning to let her know I know she wanted me to do this just feel daft as he's be really really off one minute, then fine and dashing about the next.
Anyway, quite happy at the mo with everything (lost a bit of weight on a diet too the last few weeks so feeling good) started councelling again which always helps )
getting a bit late now so gonna run, catch you both later x x x
just looking at my last post there which raves on about how happy i am and i have had such a bad day today, kicked off at 3:15am and just got worse from there. Having a hard time with Paul's behaviour he is just going through a really defiant stage, neither me or the physio can get him to do specific physio sessions he just wants to do his own thing and show off a bit too. i have found him really hard to handle today physically and emotionally i feel drained.
we've also got an absalute influx of appointments, we've had a run this month and Oct/Nov we've got 10 so far and that doesn't include our regular twice a week physio/hydro i feel totally overwhelmed i feel like i need a proper break, i'm getting really ratty and my patience is really wearing thin which just isn't like me
i am struggling to talk to anyone about it really, my mum worries so much i can't really open up to her, one of my sisters is now teaching so i have seen her once in the last 5 weeks she is so busy and my other sis has just come back from 2 week hols so i get why I am feeling a bit distant just feeling very lonely my councellor is ok but 50 mins a week just doesn't seem enough
sorry to moan i'm sure it won't last just seems to be getting on top of me today
(((((hugs))))) sorry you are having a hard time at the moment, I guess there must be something in the air at the moment because Isaac is being an absolute nightmare too, I have loads of meetings/appointments in the next few weeks with Isaac, trying to fit all those in round work is just so difficult. I had a meeting today with the OT, EYSST and nursery, the OT want to push forward for a statement but EYSST has said that in her opinion he doesnt meet the criteria for statutory assessment so therefore will not put him forward, we then had a frank exchange of opinions in which she told me that I was not the only one who found it frustrating!!!!! I did tell her that I'm sure she does find it frustrating but at the end of the day, she can go home and forget about it, I have to go home and deal with it 23-7 as do my children, to which she told me that she had a home life too!!! Well I guess any hope I had of getting any support there have just about gone. Why cant they just listen and help, that is after all what they are meant to be there for.
No way she sounds like a right cow, did she tell you what part of the criteria Isaac didn't meet? I'd fight you've obviously got the OT on side, is there an appeals system? there must be. Glad you gave her a piece of your mind,
We had OT here today with social services too regarding adaptations. She was lovely and it cheered me up a little, they are putting us forward for changes to the entrance of the house which could include re-doing the front porch to make the access closer to the ground with a ramp and rails, also changing the bathroom to a wet room with a sliding door, and hand rail in the loo. I'm glad we're getting it sorted I'll be sorry to loose the bath for Paul as he loves it, but he likes the shower too and it will be so much easier for us both, I'm doing my back in every time Paul is poorly (now) as he needs more lifting etc so trying to get rid of the main things that we struggle with now where I am lifting him. I feel a bit mad doing it as it kind of makes it a bit final for me if you know what I mean, it makes it feel real. Silly I know I've had a few years now to get to grips with it all, its just that I've played things down so much its hard to swerve the other way and be honest.
Anyway, I'm feeling a little brighter but am poorly with a horrid cold that Paul has too, and still mad busy so really feeling crap just want to curl up in bed and let someone else take over my life for a bit, not gonna happen I know so just have to get on with things
Thaks for the huggs anyway they really do help. x x x take care x x x
Hi Chris, glad youre feeling better about things, OT's are worth their weight in gold, I honestly don't know how I would manage without mine. I am feeling a bit better about things, I was tempted to ask for statutory review without the support of the EYSST but decided that as she won't support it there is very little point, It would be worse in the future when he goes to school and needs a statement if he already has a refusal on his records, I have made an appointment to see the head teacher and the SENCO at the school next week so I can talk to them about Isaac before we have to put his name down, and see what they can do to help him and accomodate him when he starts, luckily I have had 3 other children go through that school so they know me already.
This week Isaac has an eye clinic appointment Monday to see whether his sight is good enough for him to have surgery on his squint and then later on this month (27th) he is finally seeing the nuerologist that he was urgently referred to in May.
sounds like a plan, might be a really good thing you're seeing the Neuro now, they may even be able to lend a hand with the EYSST situation, you never know they may be able to add to his report or something. In my experience they are very very good with the needs of the child, and the family as a whole too hope yours is a good one.
Hi Chris, was just wondering if you could let me know what to expect at the nuero appointment. Isaac goes next Thursday and I dont really know what to expect or what questions to have ready to ask.
From reading back most of our threads...isn't it mad how much more we have to cope with than being a a mum to a ''mainstream'' child?.....I don't know about you but I have forgotten what it's like to have a full night sleep without waking up every half hour because i am worrying!!! I have now had to start a file with all the correspondence that comes with Emily's appointments, treatment etc...and don't even mention the amount of money it is costing us!!! Don't get me wrong I wouldn't swap Emily for the world & would do anything for her, but for one day...just one day it would be lovely to be able to go about our day without a comment from a stranger, family scaring me even more with their concerns etc!!
Hayley1- I had no idea what to expect at our first Neuro appt but I'm a bit of a pro now we've been back and forth since he was a few months old although I learn something new every time.
At our first appt there was a lot of questions from the Neuro, obviously they have the file and they will have read this but they may give Isaac an examination probably, and may take some photos although I'm sure Neuros have different methods. But they may ask about family history so it will be a good idea to mention the family history regarding the hypermobility.
They will look at all the things that have already been tested for, and will want to know when he hit his milestones so supporting his head, sitting, crawling, standing, walking etc and obviously you've got the sensory stuff too, might be an idea to jot it all down this week. I didn't, wish I had though
I think on the whole we had a very positive experience, even though the Neuro was quite serious about things (but Paul was still very small and 100% dependant) we felt that tests etc were valid I would say though it is hard to take it all in so don't be afraid of phoning the secretary the week after if you need clarification after you've come away, we had telephone appts with our neuro in the early days to save time and travel
on the whole I would say don't got in there expecting them to have answers on the day, but be prepared in case they are able to see something others haven't picked up on. Stay positive and don't rush, we were in there for hours the first day but they were so good and there was a lot to take in. They are so specialist and they deal with so many different conditions day to day hopefully they will have something even if its just reassurance that they will be there to help.
Good luck hope it goes welllet us know.
Lucyloo - hugs sound like you need them tonight, it is mad isn't it? I have just swapped the file we had for a much bigger one. We are having a particularly busy time at the moment, from Oct 1st to end of Nov we have 10 appointments, not including his physio twice a week so I'm a bit frantic and exausted
I've had councelling over the last year or so as I just needed to be able to speak to someone face to face without having to worry about their feelings, or making them feel guilty or worry etc it has helped me so so much, and coming on here too, we're all here for each other
sorry Lucyloo just checked your other post and reminded myself of your little girl.
It is very hard to try not to get stressed about what family, friends or strangers say, I deal with most things ok now it takes a lot of practice, but the family comments are still sometimes too much, i mean mostly they are trying to help but its hard as they don't fully understand its not their faukt they just don't have the same stuff to deal with
just come on here and rant we'll listen and help if we can
Hey all..It's been so long since I've been on here! It's been lovely to be able to read through and catch up on how your all doing!
Sounds like everyone has had a busy few months..this week alone all 3 of my children have hospital appointments..that's not inculding any other treatments Lillith has!
Reading the last few posts have touched a nerve..It's so hard to run around, listen to peoples points of view..keep on top of everything and stay sane isn't it!?! I feel like my complete life is medical these days..in fact my eldest has recently been diagnosed with Hypermobility and I'm sure her consultant thought I was mad because I new what he was checking for pretty quickly and some treatments. All from special needs group we go to!
And in April my middle child was diagnosed with diabeties..type 1, which at the lovely age of 11 has not gone down well..constant battles there. Throuhout all this Lillith has continued to amaze us all, she easily fills in the 'gaps' in her vision with her knowledge and is a realy madam. She was 2 at the begining of October and the latest phrase is 'oh my god, i cannot believe it' (thank you my 13 year old!!). Her vision is not improving too much, but remaining stable, next eye test is 4th Nov, but unfortunatly after a tonic clonic a few months back we've lost the epilepsy control and I am now getting ready to start the mammoth task of changing her medication over a six week period!
All in all it's all getting a little much, I had not stopped to consider just taking a step in here to have a chat with you ladies xx
I hope the appointment goes well next week Hayley, look forward to more updates ladies..and hope to get on here a little more.
Hi ladies, Chris thanks for the pointers, in one way I am looking forward to the appointment as I have so many niggles about Isaac that I want to get off my chest and discuss and in another way I am dreading it. I would love to just have one solid month clear with no appointments of any description in although having said that I'm not sure I would know what to do with my time if it wasnt filled up with all Isaac's appointments.
Lucyloo, I have now got a file that has all Isaacs reports in it, plus all his up coming appointments and anything else I have found either on the internet or in books that I think is relevant, I also use it to keep notes about questions I have so that they are there ready for his next appointment, that way I dont have to spend the night before trying to think of things I need to ask or discuss. Huge hugs to you, it is a difficult journey to be on but we are all here in similar situations to help each other and sound off or rant when we need to, feel free to pm me anytime.
Tink, you really sound like you have your hands full, I find it hard enough to cope with one child who has additional needs, although I do have 3 other children, I can quite imagine how hard it is with your 11 year old child, my daughter is 11 and it is a really difficult age anyway without the added stress of having diabetes. funny how you say about knowing what the dr was looking for when your son got diagnosed with hypermobility, I am a bit like that now with Isaac, I tend to go in armed with questions and when they start looking for things I know almost immediately what they are looking for.
I have come to the conclusion that we are all amazing super mums and despite all his difficulties I wouldnt change my little man for the world, he has taough me so much in his short little life that I feel truly blessed to have him. Having said that there are days that it really is an uphill struggle and we all need someone to talk to or just understand how difficult it can be.
Hi all, quick update from Isaac nuerologist appointment today, he has ruled out any muscle disease as although he has low muscle tone and weak core stability, he doesnt have muscle weakness, not sure what the difference is but I took that to be a good thing, he also said that his absences are highly unlikely to be caused by epilepsy as they are not frequent enough, they are more likely to be caused by his sensory problems. when we were discussing about his hypermobility and low muscle tone he said that alot of children with autism or aspergers have this, I'm not sure if that is his way of telling me that Isaac has autism or aspergers or whether that is something they have still not ruled out. He did say he displays a lot of autistic traits and when we were discussing what he was like as a baby he said there were a lot of early warning signs there too. He is referring us to a genetic specialist to see if there is any genetic link.
Sounds like its moving on then. I hope you felt as though they gave you enough time etc. We see genetics team at alder hey they are very very good hopefully they will be able to give you more info.
Hi All, Hayley, what a great idea about printing off the info i find from the internet & putting them in the file also! That way i will not forget anything at appointments etc! We went to the see the Orthopaedic Surgeon on Friday & I must say that i am still banging my head on the wall ( He said that there is nothing structually wrong with Emilys feet...they are turning over to the point she stands on the tops of her feet almost (she is not walking yet) due to her being Hypermobile! BUT still in all the letters from any of the specialists we see they all continue to put ? after Hypermobility....NO ONE has a clue what is wrong with her! It seems like they will not do anything further (tests,splints etc) until she is 2 years old as she still may walk before that!! I will be very very very suprised if she is walking by 2....she still shakes all over when standing!! It is so annoying why they are waiting until she is 2....it seems like this is the golden age for tests etc! Funny though, at 1years old the golden age was 18 months, then they did nothing....not giving me much confidence this!
Lucy, I know how you feel about banging your head against a brick wall, I have felt like that for over 2 years now, it is almost as though if they keep you on the wait and see approach for long enough you will just give up, when Isaac was 18 months it was 'wait and see what happens when he is 2' and it has been like that every 6 months since then, there are times I feel like giving up fighting, but I know that if I dont fight for him then no one else will.
Oh Lucyloo I just feel so angry about this, what on earth was their explanation for her feet turning then if there is nothing wrong??? My feet turn over so that the ankle moves over a bit towards the floor which is the same for Paul, and I have been given insoles and Paul has Peidro boots. I'd mention to your HV or GP that you're not happy or even telephone the Ortho to just get some more feedback if you feel you have been fobbed off.
Oh Lucy Loo...How awful for you!! I really wonder sometimes at the thoughts that go through 'professional' peoples heads sometimes!! The idea of ringing you HV/GP is probably a good idea...they may at least have access to some other details that you haven't been told!
Hayley..sounds like hopefully you are getting somewhere-all be it slowly! I'm starting to think that sometimes crossing out a box is as good as ticking one..if that makes any sense! I think your very right about us being amazing supermums!
I feel once again that life is a cycle of hospital appointments! Lillith has had another eye test..2 monthly..and her Left eye is only seeing 6/36 so we now have to patch her Right eye 2-3 hours a day. One of the smallest things I have to do...but yet it's really hit home and I'm struggling. We have another eeg this saturday and then the meds change...don't really know yet how I'm going to do it all!... time to dig deep I suppose!
Hello ladies, how are you all, new on this forum, posted twice, but been on BE since 2007.
Hope u are all well I have 2 children avril lilly born 2008 and Zander jak born july this year. Zander has tetralogy of fallot A congenital heart defect. Hope u dont mind me posting xxxx
Replies
Phil and I are going on a sensory talk in October and the OT is going to review Isaac again in January, from there she is going to go into the school he will be going to next September and start putting things in place to help with the transition, she said that if equipment needs to adapted for him then she will make sure it is done by the time he starts. Finally I feel like someone is taking my concerns seriously at last, and despite the early support teacher saying that he doesnt need a statement, she seems to think that he does, and if they dont agree to the statement then at the very least he needs an IEP in place now so it can carry up with him when he starts.
Hope you are all well xxxxxxxxx
I am so so glad you have this help now, they are very good at getting things in place for nursery/school by the time they go and they can be quite pushy too (ours is) and the nursery staff in our case tend to just jump to tune. Issaac will get all the help he needs now whether you find out the route of the problems or not. the toilet step sounds great and we have a Breezi too, he has one in nursery which is a mini version so it fits to the little tables there. The breezi is big but very good and without the tray it just fits under the table so he'll be able to sit at the table just as normal.
We have been mad busy here, Pete is working again which is great and he's gone from only being offered 4 weeks work to being offered the Foreman's job so he is hardly home at the moment but feels its worthwhile which it is I'm so proud of him.
I've been mad busy too and not too well, still not really think I should probably go the Dr as I think I've got a chest infection rather than just an annoying cough but I never then to bother. Missed an eye appt for Paul too first one I've forgotten anyway so just re-booked. Also now booked in for grommetts surgery and possibly adanoids removed too if they are causing problems, thought we would have to have an appointment as we'd been going to the local hosp but I'm not allowed to let our Paul have any more anasthetic there so got referred to childrens hospital instead. that's the beginning of November so something to phsyc myself up for anyway.
Also going for review with Speech and Language and nutricionalist regarding feeding issues. He's been pretty bad this week too had a few choking problems, might have to give his Neuro a call Monday Morning to let her know I know she wanted me to do this just feel daft as he's be really really off one minute, then fine and dashing about the next.
Anyway, quite happy at the mo with everything (lost a bit of weight on a diet too the last few weeks so feeling good) started councelling again which always helps
getting a bit late now so gonna run, catch you both later x x x
we've also got an absalute influx of appointments, we've had a run this month and Oct/Nov we've got 10 so far and that doesn't include our regular twice a week physio/hydro i feel totally overwhelmed i feel like i need a proper break, i'm getting really ratty and my patience is really wearing thin which just isn't like me
i am struggling to talk to anyone about it really, my mum worries so much i can't really open up to her, one of my sisters is now teaching so i have seen her once in the last 5 weeks she is so busy and my other sis has just come back from 2 week hols so i get why I am feeling a bit distant just feeling very lonely my councellor is ok but 50 mins a week just doesn't seem enough
sorry to moan i'm sure it won't last just seems to be getting on top of me today
We had OT here today with social services too regarding adaptations. She was lovely and it cheered me up a little, they are putting us forward for changes to the entrance of the house which could include re-doing the front porch to make the access closer to the ground with a ramp and rails, also changing the bathroom to a wet room with a sliding door, and hand rail in the loo. I'm glad we're getting it sorted I'll be sorry to loose the bath for Paul as he loves it, but he likes the shower too and it will be so much easier for us both, I'm doing my back in every time Paul is poorly (now) as he needs more lifting etc so trying to get rid of the main things that we struggle with now where I am lifting him. I feel a bit mad doing it as it kind of makes it a bit final for me if you know what I mean, it makes it feel real. Silly I know I've had a few years now to get to grips with it all, its just that I've played things down so much its hard to swerve the other way and be honest.
Anyway, I'm feeling a little brighter but am poorly with a horrid cold that Paul has too, and still mad busy so really feeling crap just want to curl up in bed and let someone else take over my life for a bit, not gonna happen I know so just have to get on with things
Thaks for the huggs anyway they really do help. x x x take care x x x
This week Isaac has an eye clinic appointment Monday to see whether his sight is good enough for him to have surgery on his squint and then later on this month (27th) he is finally seeing the nuerologist that he was urgently referred to in May.
Take care xxxxxx
let us know how you get on
Thanks
Hayley xx
From reading back most of our threads...isn't it mad how much more we have to cope with than being a a mum to a ''mainstream'' child?.....I don't know about you but I have forgotten what it's like to have a full night sleep without waking up every half hour because i am worrying!!!
I have now had to start a file with all the correspondence that comes with Emily's appointments, treatment etc...and don't even mention the amount of money it is costing us!!!
Don't get me wrong I wouldn't swap Emily for the world & would do anything for her, but for one day...just one day it would be lovely to be able to go about our day without a comment from a stranger, family scaring me even more with their concerns etc!!
Bah...i am having one of 'them' nights
x x
At our first appt there was a lot of questions from the Neuro, obviously they have the file and they will have read this but they may give Isaac an examination probably, and may take some photos although I'm sure Neuros have different methods. But they may ask about family history so it will be a good idea to mention the family history regarding the hypermobility.
They will look at all the things that have already been tested for, and will want to know when he hit his milestones so supporting his head, sitting, crawling, standing, walking etc and obviously you've got the sensory stuff too, might be an idea to jot it all down this week. I didn't, wish I had though
I think on the whole we had a very positive experience, even though the Neuro was quite serious about things (but Paul was still very small and 100% dependant) we felt that tests etc were valid I would say though it is hard to take it all in so don't be afraid of phoning the secretary the week after if you need clarification after you've come away, we had telephone appts with our neuro in the early days to save time and travel
on the whole I would say don't got in there expecting them to have answers on the day, but be prepared in case they are able to see something others haven't picked up on. Stay positive and don't rush, we were in there for hours the first day but they were so good and there was a lot to take in. They are so specialist and they deal with so many different conditions day to day hopefully they will have something even if its just reassurance that they will be there to help.
Good luck hope it goes welllet us know.
Lucyloo - hugs sound like you need them tonight, it is mad isn't it? I have just swapped the file we had for a much bigger one. We are having a particularly busy time at the moment, from Oct 1st to end of Nov we have 10 appointments, not including his physio twice a week so I'm a bit frantic and exausted
I've had councelling over the last year or so as I just needed to be able to speak to someone face to face without having to worry about their feelings, or making them feel guilty or worry etc it has helped me so so much, and coming on here too, we're all here for each other
how old is your little one?
It is very hard to try not to get stressed about what family, friends or strangers say, I deal with most things ok now it takes a lot of practice, but the family comments are still sometimes too much, i mean mostly they are trying to help but its hard as they don't fully understand its not their faukt they just don't have the same stuff to deal with
just come on here and rant we'll listen and help if we can
Sounds like everyone has had a busy few months..this week alone all 3 of my children have hospital appointments..that's not inculding any other treatments Lillith has!
Reading the last few posts have touched a nerve..It's so hard to run around, listen to peoples points of view..keep on top of everything and stay sane isn't it!?!
I feel like my complete life is medical these days..in fact my eldest has recently been diagnosed with Hypermobility and I'm sure her consultant thought I was mad because I new what he was checking for pretty quickly and some treatments. All from special needs group we go to!
And in April my middle child was diagnosed with diabeties..type 1, which at the lovely age of 11 has not gone down well..constant battles there.
Throuhout all this Lillith has continued to amaze us all, she easily fills in the 'gaps' in her vision with her knowledge and is a realy madam. She was 2 at the begining of October and the latest phrase is 'oh my god, i cannot believe it' (thank you my 13 year old!!).
Her vision is not improving too much, but remaining stable, next eye test is 4th Nov, but unfortunatly after a tonic clonic a few months back we've lost the epilepsy control and I am now getting ready to start the mammoth task of changing her medication over a six week period!
All in all it's all getting a little much, I had not stopped to consider just taking a step in here to have a chat with you ladies xx
I hope the appointment goes well next week Hayley, look forward to more updates ladies..and hope to get on here a little more.
xx
Lucyloo, I have now got a file that has all Isaacs reports in it, plus all his up coming appointments and anything else I have found either on the internet or in books that I think is relevant, I also use it to keep notes about questions I have so that they are there ready for his next appointment, that way I dont have to spend the night before trying to think of things I need to ask or discuss. Huge hugs to you, it is a difficult journey to be on but we are all here in similar situations to help each other and sound off or rant when we need to, feel free to pm me anytime.
Tink, you really sound like you have your hands full, I find it hard enough to cope with one child who has additional needs, although I do have 3 other children, I can quite imagine how hard it is with your 11 year old child, my daughter is 11 and it is a really difficult age anyway without the added stress of having diabetes. funny how you say about knowing what the dr was looking for when your son got diagnosed with hypermobility, I am a bit like that now with Isaac, I tend to go in armed with questions and when they start looking for things I know almost immediately what they are looking for.
I have come to the conclusion that we are all amazing super mums and despite all his difficulties I wouldnt change my little man for the world, he has taough me so much in his short little life that I feel truly blessed to have him. Having said that there are days that it really is an uphill struggle and we all need someone to talk to or just understand how difficult it can be.
Hope you are all well xxx
Hayley, what a great idea about printing off the info i find from the internet & putting them in the file also! That way i will not forget anything at appointments etc!
We went to the see the Orthopaedic Surgeon on Friday & I must say that i am still banging my head on the wall
It seems like they will not do anything further (tests,splints etc) until she is 2 years old as she still may walk before that!! I will be very very very suprised if she is walking by 2....she still shakes all over when standing!!
It is so annoying why they are waiting until she is 2....it seems like this is the golden age for tests etc! Funny though, at 1years old the golden age was 18 months, then they did nothing....not giving me much confidence this!
Hope all you girls are all ok
x x
Why is this so difficult?
Hayley..sounds like hopefully you are getting somewhere-all be it slowly! I'm starting to think that sometimes crossing out a box is as good as ticking one..if that makes any sense! I think your very right about us being amazing supermums!
I feel once again that life is a cycle of hospital appointments! Lillith has had another eye test..2 monthly..and her Left eye is only seeing 6/36 so we now have to patch her Right eye 2-3 hours a day. One of the smallest things I have to do...but yet it's really hit home and I'm struggling. We have another eeg this saturday and then the meds change...don't really know yet how I'm going to do it all!... time to dig deep I suppose!
Hope u are all well I have 2 children avril lilly born 2008 and Zander jak born july this year. Zander has tetralogy of fallot A congenital heart defect. Hope u dont mind me posting
xxxx