Joe loves eating carrots but they always turn a large part of his face - ORANGE!
Wednesday 30 March 2011
The clocks moved forward, two new hens moved in and Joe moved into being WELL!!!!!
Joe has been at preschool for 2 entire days this week and has coped very well. He decided he wanted to stay all day Monday and then asked to go yesterday. He's been this morning and would happily have stayed all day but he's used his 5 funded sessions for the week now! He has slept well at night and had no more nightmares since the weekend. He even woke up of his own accord at 7am yesterday and was in a good mood all day!!!!
Why does it always happen that you wait months for the doctor to do something about them being so ill and then just as the appt arrives they miraculously seem well again?! Still, will be making the most of it while it lasts and it has allowed me to make progress with shifting the various bugs that I've been fighting for weeks now. In one week we will be on the verge of (hopefully) finding out what has caused Joe's problems and (even more hopefully) heading towards solving them.
Matthew made up for Joe sleeping so well by bursting into inconsolable tears an hour after he went to bed as he'd started thinking about Nanny in the Tower (Dad's mum, Joyce, lived in a block of flats!) and how sad he is that she died and he won't see her again. Lots of cuddles, chatting and a few games of cards later he was calmed down and distracted enough to go back to sleep!
Saturday 19 March 2011
Scary Dreams and Hedgehogs in Beds
Joe has an appointment date for Papworth and it can't come soon enough. Tuesday April 5th he will stay overnight with lots of wires attached to monitor his sleep in every possible detail, then next day there'll be more tests before, hopefully, an answer.
Meanwhile, we have the scary dreams.
I used to have them and only once the narcolepsy was diagnosed did I understand why. I remember waking up thinking someone had broken in to the house Andy and I shared and sure they were still there. I put my coat over my pj's and took a taxi to the nightclub where he was working so convinced was I that it was real. But at least at 20 years old I could understand why it happened!
Joe has always had them and I have always worried about why. Now it looks likely it is a sleep disorder causing them. If they're the same as mine, which I suspect they are, he'll start to dream before he enters full sleep, so the dreams are reality to his mind. He will scream, cry, kick, bang his head on the wall, and although he seems awake he cannot be comforted. If you try to give him a cuddle or talk to him he lashes out, thinking you're part of it. I've discovered that if I hold him very tightly, lift him out of bed and take him to a brightly lit room away from his bed it seems to calm him quicker and he comes out of the dream. He doesn't realise it was a dream though and will often talk about it like it is still happening.
Sometimes we go months without any but this week it's been every night for 4 nights so far. On Wednesday night I found Joe banging his head on the wall. He was sure there was someone or something hiding in the shadows and would not be convinced otherwise. He insisted on me walking backwards out of the room and he kept turning to check all around us for the "creature". He slept in my room with the lights on full. Tonight I heard a very loud, sudden, high-pitched scream. I rushed in to him, grabbed him and took him downstairs.
As he sat with me his first words were "there was a hedgehog in the hole". He has since told me that "it's very naughty really, hedgehogs aren't supposed to make their houses in people's beds" and "the creature is very spiky and the spikes hurt, it's the one from last time mummy". Makes absolutely no sense and there were lots of other random parts of sentences too.
He's calmed down now (with the aid of recordings of Little Charley Bear) and we'll head back to bed soon, but whoever or whatever this hedgehog creature is, I really wish it would make its home somewhere other than Joe's bedroom for all our sakes!
Let's hope April brings answers, less hedgehogs and more sleep.......
Sunday 13 March 2011
Baylham Farm - Sunday 13th March
No football for Andy today so we went off to the Farm for the afternoon. One month exactly until Joe turns 4 and at the moment he wants to go to the Farm for his party but it does change daily!
Joe's birthday wishlist number 1 - Concrete Blocks.
Uncle Skott and Grandad Dingles arrived today with a trailer of concrete blocks to go under the caravan (the caravan is now in the back garden and will become a playroom for the boys). As they were unloading Joe appeared and announced that "They are my favourite". I thought maybe I had misheard but when I asked him what he was talking about he said (with no hint of a laugh) that the concrete blocks were his favourite as "they are bigger than bricks and so you can use just one instead of lots".
Joe's birthday is in a few weeks time, please feel free to wrap up a breeze block or two..
Saturday 5 March 2011
World Book Night
Tonight is World Book Night and I am a Book Giver! I have been given 48 copies of the book
ONE DAY
http://www.davidnichollswriter.com/one_day
to give away
I'm going to deliver a few around the village, some at toddlers, Granny's taking some to daycentre and if anybody would like one please let me know - I'll put them in the post!
ONE DAY
http://www.davidnichollswriter.com/one_day
to give away
I'm going to deliver a few around the village, some at toddlers, Granny's taking some to daycentre and if anybody would like one please let me know - I'll put them in the post!
Tuesday 1 March 2011
Baylham Farm Spring lambs
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| We had to have words with Joe about not trying to make the lamb talk |
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| We promise the lamb was fine, just sleepy! |
New Month - New Doctor (or an update on Joe!)
Our blog has sat empty for a while now, chances to sit down were few and far between and to be honest, I was forcing myself to do as I do best and keep smiling through but if I actually stopped to think or speak about the nightmare we're going through I found the tears didn't want to stop once they'd been allowed to start!
If you know the story of Joe's dreadful start to his 3rd year then please feel free to skip the next bit and jump straight to Autumn/Winter, but I feel I need to get it all out and this seems as good a place as any!
Spring/Summer 2010
Joe had pneumonia almost a year ago now. His birthday is April 13th. That Tuesday in 2010 was the day Granny went home ill. On Sunday 18th she went to hospital in an ambulance muttering about books she'd read to the boys some weeks earlier and about a conspiracy plot where the nhs used air vents to spy on patients...... (only now can we laugh at these things!). That was the day we found out she had pneumonia and the day Joe got a temperature.
Tuesday 20th, Friday 23rd saw 2 visits to the Doctor and 2 visits to children's ward to be told he had a virus and I was a neurotic mother who should take him home and stop putting him through the stress of hospital trips. Monday 26th was the day a doctor finally took pity on me and my 3yr old who was so weak he needed to be supported to sit upright.
Blood tests led to a phonecall suggesting an ambulance be sent unless I could get him straight to hospital. Eventually after several hours they finally told me what I'd been saying all along. Joe had pneumonia. He got worse all week and went in an emergency ambulance with oxygen mask and wires attached to addenbrookes on Friday 30th April, the day Granny was sent home having lost all delusions of espionage and recovered very well from her ordeal!
May day came on Saturday morning and brought with it an operation to insert chest drain and permanent line into his arm to give him antibiotics. Bank Holiday weekend came and went, so did doctors, nurses, other patients. Consultant returned on Tuesday 4th May and 2 days later after a stern talking to from my Mother - and I'm still angry it took her driving up from Swindon for him to finally listen to what I was saying - he accepted the drain was not working and removed it.
We were told we could go back to West Suffolk that day. There were no beds. We were told we could go next day. There was no transport. The prospect of yet another weekend miles away from family and with infection control meaning my only contact all week with Matthew had been for 10 mins in a hallway I was desperate to get back. A few more phonecalls from Mother and finally they found a stray ambulance car to transport us back, thanks to Uncle Neil bringing Joe's seat over the night before or they wouldn't have let him travel in the car!
We arrived back just in time for Matthew to visit after school and as we'd come from another hospital we had our own little side room. Joe was happier amongst familiar nurses and with his favourite playleader Leigh down the hall he seemed much brighter. They upped his iv antibiotics and he started a new course of oral antibiotics too. Although progress was slow at first, once he started to improve it happened very quickly. By Thursday he was well enough to come out for an hour with me and we enjoyed escaping back into the real world for a bit! On Friday 14th May we were allowed day-release and after his morning meds only returned for his evening iv. As his temperature had returned to normal and stayed there they decided we could leave for the weekend and just come back on Monday to check all was still going the right way and remove the many tubes attached to his tiny body.
On Monday May 17th we left hospital and hoped that would be the end of it. There were a few more xrays and scans over the next few months, with blood tests added in for good measure, and in August the consultant decided Joe was well enough to be discharged from his department despite my concerns that he was not improving.
Autumn/Winter 2010/11
School started in September and my longed for return to normal life did not materialise. Joe was still very tired and with that came behaviour issues. He wasn't gaining weight and in general was not the same 3yr old he had been before the illness. He returned to wsh in December and bloods were taken, an appointment made for late January to review the results.
In early January I had my routine check with papworth for my narcolepsy review and Joe came with me. After a brief chat with my doctor about Joe I went away to get the GP to refer him for them to investigate. Then we went to the appt with the hospital doc. She discharged him as we decided it seemed a sleep issue now and there was little more she could do. Joe was given an appt on March 1st for papworth and I thought that was the end of it.
A letter arrived, a copy of a letter from the hospital doc to the GP. For some unknown reason she decided to ring the consultant at addenbrookes and now he wanted to see Joe. But no one had called me to explain what was going on and I'd not heard from addenbrookes. I rang the GP and she was lovely as ever, she said that it seemed she could do no right as far as other docs were concerned and that if I felt it was what I wanted then I should attend papworth as if nothing had happened and then decide what to do about the other one afterwards.
Today is March 1st.
Joe saw the consultant from papworth today, at the private hospital in Bury (which Joe refuses to believe is a hospital because "Well, hospitals just aren't in the middle of town Mummy"). He was great! It is possible Joe has Narcolepsy, unusual this young but has been known to show up earlier in subsequent generations and as mine was triggered by illness just before my 17th birthday it is possible Joe has it and the pneumonia triggered it. He also thinks Joe has abnormally large tonsils (which the hospital doc had said he didn't) and this could be causing Sleep Apnea. This seems most likely to me, Joe doesn't have my bad reactions to drugs and has never been the nightmare sleeper that Granny informs me I was, everything has always pointed to Matthew being likely to suffer but not Joe. We will receive an appointment for Joe to have a sleep study carried out, we'll both stay over at papworth and they will monitor every aspect of his sleep. The consultant seems confident that this will be fairly soon and then hopefully we will get some answers.
In the meantime we've put the other hospital on hold and are looking forward to some answers, hopefully just in time for Joe's 4th birthday in 6 weeks time!
It's not much fun here at the moment. I can't go back to work so money is non-existent. Joe is so tired he turns into a 2yr old with full-on screaming, screeching, arm and leg flailing tantrums. Matthew has to tread on eggshells with me and Joe now instead of just having to avoid Mummy on her 'tired' days! We struggle to leave the house after 4pm and when we do attempt it I wish we hadn't. Granny had a moan at me for shouting at the boys last week, I think she has this daft idea it might give her neighbours a bad impression - like the minibus and caravan that arrive with Mother don't already do that ;-). She was met with a blubbering wreck as I informed her that if I didn't shout I would explode on the inside and that there was only so much grinning and bearing it I could do!
But, today has given us back some hope and my spirit is returning a little. I have now passed the last birthday before that milestone that will see me finally feeling like a grown-up and made Mother and Granny feel old by doing so (I did have to remind Granny that her 80th birthday in January really should have done that already!).
Our beloved Baylham Farm has re-opened for the Spring and we visited last week to see the new bleating arrivals.
School has gone back and Matthew has new friends living a few doors away who are very keen to live in each others gardens playing football.
If you know the story of Joe's dreadful start to his 3rd year then please feel free to skip the next bit and jump straight to Autumn/Winter, but I feel I need to get it all out and this seems as good a place as any!
Spring/Summer 2010
Joe had pneumonia almost a year ago now. His birthday is April 13th. That Tuesday in 2010 was the day Granny went home ill. On Sunday 18th she went to hospital in an ambulance muttering about books she'd read to the boys some weeks earlier and about a conspiracy plot where the nhs used air vents to spy on patients...... (only now can we laugh at these things!). That was the day we found out she had pneumonia and the day Joe got a temperature.
Tuesday 20th, Friday 23rd saw 2 visits to the Doctor and 2 visits to children's ward to be told he had a virus and I was a neurotic mother who should take him home and stop putting him through the stress of hospital trips. Monday 26th was the day a doctor finally took pity on me and my 3yr old who was so weak he needed to be supported to sit upright.
Blood tests led to a phonecall suggesting an ambulance be sent unless I could get him straight to hospital. Eventually after several hours they finally told me what I'd been saying all along. Joe had pneumonia. He got worse all week and went in an emergency ambulance with oxygen mask and wires attached to addenbrookes on Friday 30th April, the day Granny was sent home having lost all delusions of espionage and recovered very well from her ordeal!
May day came on Saturday morning and brought with it an operation to insert chest drain and permanent line into his arm to give him antibiotics. Bank Holiday weekend came and went, so did doctors, nurses, other patients. Consultant returned on Tuesday 4th May and 2 days later after a stern talking to from my Mother - and I'm still angry it took her driving up from Swindon for him to finally listen to what I was saying - he accepted the drain was not working and removed it.
We were told we could go back to West Suffolk that day. There were no beds. We were told we could go next day. There was no transport. The prospect of yet another weekend miles away from family and with infection control meaning my only contact all week with Matthew had been for 10 mins in a hallway I was desperate to get back. A few more phonecalls from Mother and finally they found a stray ambulance car to transport us back, thanks to Uncle Neil bringing Joe's seat over the night before or they wouldn't have let him travel in the car!
We arrived back just in time for Matthew to visit after school and as we'd come from another hospital we had our own little side room. Joe was happier amongst familiar nurses and with his favourite playleader Leigh down the hall he seemed much brighter. They upped his iv antibiotics and he started a new course of oral antibiotics too. Although progress was slow at first, once he started to improve it happened very quickly. By Thursday he was well enough to come out for an hour with me and we enjoyed escaping back into the real world for a bit! On Friday 14th May we were allowed day-release and after his morning meds only returned for his evening iv. As his temperature had returned to normal and stayed there they decided we could leave for the weekend and just come back on Monday to check all was still going the right way and remove the many tubes attached to his tiny body.
On Monday May 17th we left hospital and hoped that would be the end of it. There were a few more xrays and scans over the next few months, with blood tests added in for good measure, and in August the consultant decided Joe was well enough to be discharged from his department despite my concerns that he was not improving.
Autumn/Winter 2010/11
School started in September and my longed for return to normal life did not materialise. Joe was still very tired and with that came behaviour issues. He wasn't gaining weight and in general was not the same 3yr old he had been before the illness. He returned to wsh in December and bloods were taken, an appointment made for late January to review the results.
In early January I had my routine check with papworth for my narcolepsy review and Joe came with me. After a brief chat with my doctor about Joe I went away to get the GP to refer him for them to investigate. Then we went to the appt with the hospital doc. She discharged him as we decided it seemed a sleep issue now and there was little more she could do. Joe was given an appt on March 1st for papworth and I thought that was the end of it.
A letter arrived, a copy of a letter from the hospital doc to the GP. For some unknown reason she decided to ring the consultant at addenbrookes and now he wanted to see Joe. But no one had called me to explain what was going on and I'd not heard from addenbrookes. I rang the GP and she was lovely as ever, she said that it seemed she could do no right as far as other docs were concerned and that if I felt it was what I wanted then I should attend papworth as if nothing had happened and then decide what to do about the other one afterwards.
Today is March 1st.
Joe saw the consultant from papworth today, at the private hospital in Bury (which Joe refuses to believe is a hospital because "Well, hospitals just aren't in the middle of town Mummy"). He was great! It is possible Joe has Narcolepsy, unusual this young but has been known to show up earlier in subsequent generations and as mine was triggered by illness just before my 17th birthday it is possible Joe has it and the pneumonia triggered it. He also thinks Joe has abnormally large tonsils (which the hospital doc had said he didn't) and this could be causing Sleep Apnea. This seems most likely to me, Joe doesn't have my bad reactions to drugs and has never been the nightmare sleeper that Granny informs me I was, everything has always pointed to Matthew being likely to suffer but not Joe. We will receive an appointment for Joe to have a sleep study carried out, we'll both stay over at papworth and they will monitor every aspect of his sleep. The consultant seems confident that this will be fairly soon and then hopefully we will get some answers.
In the meantime we've put the other hospital on hold and are looking forward to some answers, hopefully just in time for Joe's 4th birthday in 6 weeks time!
It's not much fun here at the moment. I can't go back to work so money is non-existent. Joe is so tired he turns into a 2yr old with full-on screaming, screeching, arm and leg flailing tantrums. Matthew has to tread on eggshells with me and Joe now instead of just having to avoid Mummy on her 'tired' days! We struggle to leave the house after 4pm and when we do attempt it I wish we hadn't. Granny had a moan at me for shouting at the boys last week, I think she has this daft idea it might give her neighbours a bad impression - like the minibus and caravan that arrive with Mother don't already do that ;-). She was met with a blubbering wreck as I informed her that if I didn't shout I would explode on the inside and that there was only so much grinning and bearing it I could do!
But, today has given us back some hope and my spirit is returning a little. I have now passed the last birthday before that milestone that will see me finally feeling like a grown-up and made Mother and Granny feel old by doing so (I did have to remind Granny that her 80th birthday in January really should have done that already!).
Our beloved Baylham Farm has re-opened for the Spring and we visited last week to see the new bleating arrivals.
School has gone back and Matthew has new friends living a few doors away who are very keen to live in each others gardens playing football.
And Joe, well, he sat in the hospital today and listened to stories on my ipod while the nurses cooed over him and the doctor attempted to have a conversation with him, before walking and asking if we could go into town as he really would like to get all the books from the Thomas set. "And look Mummy, there's pictures of them on the back of the one I brought with me so we can just go get them now". At £2.99 each and with around 30 more to get to complete the collection not counting the extra 3 or 4 they release each year I have told him that he might manage it on his 16th birthday if he's lucky but it definitely wasn't happening today! He's happy for most of the time, seems a little frustrated to be stuck in this body that just won't work properly and is fed up of having to go to bed so early, but he muddles through. He's started swimming lessons and his first one last week was an interesting experience. He kept dancing about in the pool and wouldn't stay in one spot long enough to do much except drink pool water, but lesson 2 is tomorrow so I'm hoping for a little more concentration and a little less new experience enthusiasm!
Roll on April 13th 2011 .............
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| !!!!!!! |
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