It feels like forever since i last posted, in reality it has probably only been a week or so. Never the less i am back, my absence was due to Frankie, as you may have gathered. It would seem all wasn't ok after we left hospital, typical really, he was completely fine the evening after his botox, but several days after Frankie started to get poorly, since then he just hasn't returned to his normal self. I feel like he starts getting there, then we take three steps back. It seems everything has been put on hold this past week or so. The only thing i have had time for is sick, poop and a grumpy little boy.
We did attempt to take Frankie to an appointment he had this week, to get his feet measured for his new boots so he could get back into his standing frame. But it would seem he just wasn't ready, ending with him vomiting on the journey there, all over himself, his car seat, the feeding pump, the suction machine and the car!! This boy does nothing by halves. So leaving us no choice we headed home, and missed the appointment. I can imagine they shall be quite annoyed Frankie "wasted an appointment" but what did they expect, for me to arrive with Frankie soaking in his own sick, to then go back to my car that would have stunk to put him back in a sicky car seat, i think not. Some professionals will never understand.
Luckily Frankies physio lesson today went better, it was at home, that could have been why. He co operated with the stretches, which have become quite intense and uncomfortable since the botox. They say it will help the botox last longer, so if that means not having to put him to sleep and stick needles in him so often, then i am happy with that. Its often quite uncomfortable with physio's, you want to let them do their job and not get in their way, but they want you to watch them do what you do every day yourself. Awkward. Brady is the physio and massage expert though, so i think Frankie is secretly pleased when his physio's leave and he gets his Daddy back.
Frankie has a follow up appointment Thursday at Peterborough Hospital regarding his botox, so here is to hoping all is well and they are pleased. Then Friday the busy boy is to look at a new car seat, this i am sceptical about. Its hard to accept that Frankie will always need to be in a car seat or wheel chair in the car, this is most certainly not made easier by the sight of them! This particular car seat they think is suitable for his needs is named the "Carrot" car seat, with the hefty price tag starting at around £700 you would have thought they would of at least made them look nice, but having seen this one on the internet already, they haven't. All i see is 'a carrot' I shall defiantly be looking at getting this covered in some Toy Story material :-) or maybe Batman if Brady has anything to do with it.
Will peace come at the weekend? I doubt it. Buy hey, we got through another week and thats the main thing.
This week has become a bit of an eye opener to me, it has been one of the hardest weeks since Frankie was born and after reaching out for help i have learnt who the people are i can truly rely on and understand how hard Brady and I work with Frankie and the others than put themselves first and don't care that we were suffering and in need of a helping hand. This wont be forgotten. So thank you for showing your true colours and to the one and only person that helped, i can't thank you enough. You know who you are.
Tuesday 12 March 2013
Tuesday 5 March 2013
Sometimes you just have to laugh.
I have been waiting and waiting, unfairly waiting in my opinion. Now i am sure most of you will have heard of "The Blue Badge" something old people have right so they can park anywhere? Well yes, this is partly true, but there is more to it than that, these aren't handed out as easily as people would probably think.
From day one we knew Frankie wouldn't walk, given his diagnosis it was obvious. Three years later, Frankie is finally eligible to apply for one, well i am on his behalf. So i set too it, all 16 pages, now i fill out hundreds of forms for Frankie a year, but this one asked me what Frankie COULD do rather than COULDN'T.
Could he walk the length of a football pitch? Can he walk to the end of the road? Can he walk to the end of the drive way? No is the answer, no was the answer to most of the 16 pages, so you would think, how hard can it be, but no isn't a good enough answer. Why is it a no? Can that change? In what time frame will that change? Let us know as soon as it changes, ok ok, slow down, he hasnt even been awarded it yet.
So, i set about writing on every single question, the same thing, why he cant walk, what he requires to get around, who he requires, what he has to take with him, what ever it is from me they need to answer their questions, i give. Thats that done, but because the majority of the form was answered "No" they need proof, proof from professionals, not i know they need to make sure people aren't claiming for these who shouldn't, but they still do.
They obviously don't realise how hard professionals are to get hold of, my Occupational Therapist for example was off they day i phoned, then it would be the weekend and hopefully she would give me a call *sometime Monday* she called me Tuesday and i finally received it via post Friday, great i would be posting this over the weekend. My physio was off on paternity leave. And the one from Frankies consultant i had to send Brady to Peterborough Hospital to fetch. Will things ever go smoothly?
You would have thought that would be all they needed, its only a badge after all, but no, they wanted a copy of Frankies birth certificate and another form of proof of Frankies address, yes, because my son regularly gets post and finally proof he was awarded higher rate of mobility, obviously he had been awarded this, you cant apply for a blue badge if not, how stupid do they think people are, or how stupid are people, thats my question?
So after hopping along to find a photocopier in the little town of Crowland, of which i had no idea how to use, thank you co-op worker for your assistance, i was nearly all set. I just needed a passport style photo of Frankie, with a white background, getting any child to sit still is hard enough but when your child cant sit, nor will their wheelchair fit into a photo booth this became a problem. In the end i just sent an ordinary photo with Frankie sitting held up on the sofa, all this for a photo that sits on the reverse of the blu badge.
Quite pleased with myself for going insane throughout the blue badge form, Lottie and I skipped down to the post office, yes i was that happy it was finally done, we paid the £3 it cost to send of which i dint even batter an eyelid, i just wanted it to arrive with them and be sorted. Finally it was done and we tottered off home.
About a week later i received a letter from them, i thought blimey that was quick, i expected it to take 6/8 weeks, there was a a problem, what more could they bloody want from me, well.....now this is slightly embarrassing but in a way a relief, i had forgot to sign it, sign it!! 5 bloody letters and it would have been done.
Angrily signed at my annoyance i shoved it in a envelope and this time begrudgingly paid for it to be posted once again.
Here it to hoping after all my hard work, along with my stupidity, Frankie will be entitled to his blue badge! I shall let you all know soon :)
Thank you for reading :-)
From day one we knew Frankie wouldn't walk, given his diagnosis it was obvious. Three years later, Frankie is finally eligible to apply for one, well i am on his behalf. So i set too it, all 16 pages, now i fill out hundreds of forms for Frankie a year, but this one asked me what Frankie COULD do rather than COULDN'T.
Could he walk the length of a football pitch? Can he walk to the end of the road? Can he walk to the end of the drive way? No is the answer, no was the answer to most of the 16 pages, so you would think, how hard can it be, but no isn't a good enough answer. Why is it a no? Can that change? In what time frame will that change? Let us know as soon as it changes, ok ok, slow down, he hasnt even been awarded it yet.
So, i set about writing on every single question, the same thing, why he cant walk, what he requires to get around, who he requires, what he has to take with him, what ever it is from me they need to answer their questions, i give. Thats that done, but because the majority of the form was answered "No" they need proof, proof from professionals, not i know they need to make sure people aren't claiming for these who shouldn't, but they still do.
They obviously don't realise how hard professionals are to get hold of, my Occupational Therapist for example was off they day i phoned, then it would be the weekend and hopefully she would give me a call *sometime Monday* she called me Tuesday and i finally received it via post Friday, great i would be posting this over the weekend. My physio was off on paternity leave. And the one from Frankies consultant i had to send Brady to Peterborough Hospital to fetch. Will things ever go smoothly?
You would have thought that would be all they needed, its only a badge after all, but no, they wanted a copy of Frankies birth certificate and another form of proof of Frankies address, yes, because my son regularly gets post and finally proof he was awarded higher rate of mobility, obviously he had been awarded this, you cant apply for a blue badge if not, how stupid do they think people are, or how stupid are people, thats my question?
So after hopping along to find a photocopier in the little town of Crowland, of which i had no idea how to use, thank you co-op worker for your assistance, i was nearly all set. I just needed a passport style photo of Frankie, with a white background, getting any child to sit still is hard enough but when your child cant sit, nor will their wheelchair fit into a photo booth this became a problem. In the end i just sent an ordinary photo with Frankie sitting held up on the sofa, all this for a photo that sits on the reverse of the blu badge.
Quite pleased with myself for going insane throughout the blue badge form, Lottie and I skipped down to the post office, yes i was that happy it was finally done, we paid the £3 it cost to send of which i dint even batter an eyelid, i just wanted it to arrive with them and be sorted. Finally it was done and we tottered off home.
About a week later i received a letter from them, i thought blimey that was quick, i expected it to take 6/8 weeks, there was a a problem, what more could they bloody want from me, well.....now this is slightly embarrassing but in a way a relief, i had forgot to sign it, sign it!! 5 bloody letters and it would have been done.
Angrily signed at my annoyance i shoved it in a envelope and this time begrudgingly paid for it to be posted once again.
Here it to hoping after all my hard work, along with my stupidity, Frankie will be entitled to his blue badge! I shall let you all know soon :)
Thank you for reading :-)
Sunday 3 March 2013
Is he tired?
If i had a penny for every time i heard this, i would be a rich woman, ok maybe not rich as i would like, as i would have to share it with Brady, as i am nice like that, but still, nice and comfortable.
So, why do i get asked this?
When we go out with Frankie you have to options, you haul his wheelchair out, or you cary him, now both are as much work as one another, the wheelchair is heavy and takes some putting together, Frankie is heavy and his body is far from all together.
Due to lack of head control he is floppy, a bit all over the place to say the least, but nevertheless he loves it when his Daddy scoops him up and puts him in his arms and Frankie's little face bops up and down on his shoulders. I am more swayed to using the wheelchair, as heavy as it is, its all in place and his feeding pump can be hooked on and the suction machine has an in built tray underneath, what more could a mummy of a disabled child want/need, its perfect, ok this mummy wouldn't say no to a new pair of shoes, but i hardly think the wheelchair service will :(
Frankie takes Baclofen , a muscle relaxant medication medication, via his g-tube, this can at times leave him a bit drowsy and hey, he isn't you average three year old with colour in their cheeks and all raged up because the have thrown a paddy, he is a mellow three year old who's only source of entertainment is what you show him.
Yes he often looks sleepy, yes when i am going around the supermarket and he is in his wheelchair and people say to me "Oh bless him, has he just woken up?" "Is he tired?" I just want to scream, what do you say, what would you say if it was you?
I have two options, "No actually he is disabled so he constantly looks this way" - which would spark off the questions, I haven't got time to stand at tell someone Frankies life story, food shopping is normally focused around Frankies feeds, appointments and when he is ok to travel, plus really, do they really care to know, did they just make that comment as i caught them staring at him? In those cases they want a simple "Yes" from me? They don't want to feel awkward for staring and normally want a swift exit. Luckily to save their embarrassment i give a simple "Yes" , unless you catch me on a bad day and then you may have you ear bitten off.
Knowing some people they probably take one look at him and think i keep him up all hours, allowing him to watch the tv, how wrong can they be!
So, why do i get asked this?
When we go out with Frankie you have to options, you haul his wheelchair out, or you cary him, now both are as much work as one another, the wheelchair is heavy and takes some putting together, Frankie is heavy and his body is far from all together.
Due to lack of head control he is floppy, a bit all over the place to say the least, but nevertheless he loves it when his Daddy scoops him up and puts him in his arms and Frankie's little face bops up and down on his shoulders. I am more swayed to using the wheelchair, as heavy as it is, its all in place and his feeding pump can be hooked on and the suction machine has an in built tray underneath, what more could a mummy of a disabled child want/need, its perfect, ok this mummy wouldn't say no to a new pair of shoes, but i hardly think the wheelchair service will :(
Frankie takes Baclofen , a muscle relaxant medication medication, via his g-tube, this can at times leave him a bit drowsy and hey, he isn't you average three year old with colour in their cheeks and all raged up because the have thrown a paddy, he is a mellow three year old who's only source of entertainment is what you show him.
Yes he often looks sleepy, yes when i am going around the supermarket and he is in his wheelchair and people say to me "Oh bless him, has he just woken up?" "Is he tired?" I just want to scream, what do you say, what would you say if it was you?
I have two options, "No actually he is disabled so he constantly looks this way" - which would spark off the questions, I haven't got time to stand at tell someone Frankies life story, food shopping is normally focused around Frankies feeds, appointments and when he is ok to travel, plus really, do they really care to know, did they just make that comment as i caught them staring at him? In those cases they want a simple "Yes" from me? They don't want to feel awkward for staring and normally want a swift exit. Luckily to save their embarrassment i give a simple "Yes" , unless you catch me on a bad day and then you may have you ear bitten off.
Knowing some people they probably take one look at him and think i keep him up all hours, allowing him to watch the tv, how wrong can they be!
Life with a disabled child.
We have been attending appointments for Frankie from day one, it was made clear he would need therapies, appointments, meetings, back then i never really knew it would be as much as it is now. All of which are still in place today, he is a busy bee, he hardly stops, which means we hardly stop, but anything to help him and ease any pain he has is most certainly worth it. To any mothers reading this you will know you do everything to help you child, to make sure they are happy, healthy and safe, for some parents this is easier than others. I will admit, i do find it hard to understand some peoples concerns, i know we all love out children dearly, but a cough, cold isn't going to kill them.
When Frankie gets a cough, its not easily sorted, as many of you know Frankie is fed via a gastrostomy tube, a tube operated into his stomach, of which he is fed milk 4 hourly on, so when a cough appears Frankie is often sick, he coughs so hard using stomach muscles strangely, i now that sounds a little crazy, but give it a go, a cough u feel in your throat is alot different to a cough you heave from you stomach, our benefit, knowing the difference and when each one is relevant, Frankies misfortune, not knowing.
So there is the sick, oh those four letters, that small four letter word, i would have to say i am relieved of a day when i don't have to spend it cleaning up sick off my sofa, a bed, my carpets.
A lot of my friends who have children i notice will write on facebook of course :) that their children are poorly, that they are up in the middle of the night washing/cleaning their child and their bed, i feel for them, maybe it harder this only happening every once in a while, but let me let you in on a secret, i do this, many times a week, week in, week out, but hey if i informed you all of that you may find me a little boring right, or maybe i would be seen as attention seeking, who knows, peoples opinions are all different!
So picture this you are half asleep, you child starts vomitting, you run to him, well not all that far, Frankie sleeps right next to our bed, its lovely to wake up to his little face but his snooring, jeez, now that i could do without :) but anyway, out comes the suction machine, now i am not sure how many of you have heard of one of these, my description, a large, noisy, machine that saves you life, well in this case Frankies. Frankie has no gag/swallow reflex, so when sick comes up, sick can not go down, not does he have the capability of aiming it anywhere, so out comes the suction machine, lovely name it has *devilbliss* really, who thinks of these names?
Now suctioning a child who has not body movement/head control/understanding of the situation is hard, to how a child still and stick a tube in their mouth and up their nose isn't something we want to do on a daily basis, but if it saves them from choking and worse things happening then you would do it right? This suction machine and i have a love hate relationship, i love how it have saved Frankie from aspirating, swallowing anything into his lungs, but i hate how he fears it still, after three years. So with all this going on you find yourself having to change bed sheets, normally the ones you have only just got dry and put onto their bed just before bedtime. Changing Frankie, as most of you also know Frankie had Cerebal Palsy, the down side of this when changing is mainly the fact he is stiff, but also the fact he had no motor skills, he cant pop out his arms to help me out, he can't raise them above him head to help me get him dressed faster, he is my "very large newborn" making dressing/undressing a lengthy process.
The list goes on with Frankie, but i have given you a little insight into Frankie and his ways. When you think you tired when you child is sick, next time think, at least i know its not likely to happen again for a few months, enjoy you sleep for those next few months because i, along with other parents of disabled children will be saying to ourselves, thats over for tonight now, no more sick/problems until tomorrow.
He is a brave boy, he goes through all this yet still has a smile on his face and fights every day to everything that is thrown his way. I couldn't be more proud. He will never know how proud i am of him, or even what proud is, but thats ok, i can deal with that, as long as he continues to do what he is doing. On this note i leave you, i can hear Frankies snoring and he is due for a feed, so off to get his medication, milk and suction machine and hope for a good night, before the madness tomorrow! Night night. X
P.s I added a few photos of Frankie in bed on happier days, one is at the hospital, yes he did take his toy story blanket and toys, thats just how he rolls, but i thought you would appreciate these more than pictures of sick, haha.
When Frankie gets a cough, its not easily sorted, as many of you know Frankie is fed via a gastrostomy tube, a tube operated into his stomach, of which he is fed milk 4 hourly on, so when a cough appears Frankie is often sick, he coughs so hard using stomach muscles strangely, i now that sounds a little crazy, but give it a go, a cough u feel in your throat is alot different to a cough you heave from you stomach, our benefit, knowing the difference and when each one is relevant, Frankies misfortune, not knowing.
So there is the sick, oh those four letters, that small four letter word, i would have to say i am relieved of a day when i don't have to spend it cleaning up sick off my sofa, a bed, my carpets.
A lot of my friends who have children i notice will write on facebook of course :) that their children are poorly, that they are up in the middle of the night washing/cleaning their child and their bed, i feel for them, maybe it harder this only happening every once in a while, but let me let you in on a secret, i do this, many times a week, week in, week out, but hey if i informed you all of that you may find me a little boring right, or maybe i would be seen as attention seeking, who knows, peoples opinions are all different!
So picture this you are half asleep, you child starts vomitting, you run to him, well not all that far, Frankie sleeps right next to our bed, its lovely to wake up to his little face but his snooring, jeez, now that i could do without :) but anyway, out comes the suction machine, now i am not sure how many of you have heard of one of these, my description, a large, noisy, machine that saves you life, well in this case Frankies. Frankie has no gag/swallow reflex, so when sick comes up, sick can not go down, not does he have the capability of aiming it anywhere, so out comes the suction machine, lovely name it has *devilbliss* really, who thinks of these names?
Now suctioning a child who has not body movement/head control/understanding of the situation is hard, to how a child still and stick a tube in their mouth and up their nose isn't something we want to do on a daily basis, but if it saves them from choking and worse things happening then you would do it right? This suction machine and i have a love hate relationship, i love how it have saved Frankie from aspirating, swallowing anything into his lungs, but i hate how he fears it still, after three years. So with all this going on you find yourself having to change bed sheets, normally the ones you have only just got dry and put onto their bed just before bedtime. Changing Frankie, as most of you also know Frankie had Cerebal Palsy, the down side of this when changing is mainly the fact he is stiff, but also the fact he had no motor skills, he cant pop out his arms to help me out, he can't raise them above him head to help me get him dressed faster, he is my "very large newborn" making dressing/undressing a lengthy process.
The list goes on with Frankie, but i have given you a little insight into Frankie and his ways. When you think you tired when you child is sick, next time think, at least i know its not likely to happen again for a few months, enjoy you sleep for those next few months because i, along with other parents of disabled children will be saying to ourselves, thats over for tonight now, no more sick/problems until tomorrow.
He is a brave boy, he goes through all this yet still has a smile on his face and fights every day to everything that is thrown his way. I couldn't be more proud. He will never know how proud i am of him, or even what proud is, but thats ok, i can deal with that, as long as he continues to do what he is doing. On this note i leave you, i can hear Frankies snoring and he is due for a feed, so off to get his medication, milk and suction machine and hope for a good night, before the madness tomorrow! Night night. X
P.s I added a few photos of Frankie in bed on happier days, one is at the hospital, yes he did take his toy story blanket and toys, thats just how he rolls, but i thought you would appreciate these more than pictures of sick, haha.
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