It's been a while

Alot has happened since last post, ronnies got his legs in casts again to break his toe walking habit. He had them on for four weeks to start with it but as soon as they were off he started doing it again, so he's got them back on for six weeks this time. He's so good with it and doesn't really notice them.
Callum's appointments have continued and he went in and had his blood tests to check his hormones as he's not growing as he should. He had to stay in overnight as they wanted to monitor his blood sugar and tested it every 3 hours through the night. They put a drip in the next day and took blood every half an hour for a 3 hour period. That was tough, probably the hardest thing I've had to do with him do far, I know it needed to be done but each procedure is more distressing for him.  We have a 4 week wait for these results.  If he has a problem with hormones he will need an injection every day until he's in his 20's, if his hormones are ok then the reason he's not growing is because if the syndrome (whatever that may be) and they won't be able to do anything about it.  We saw the paediatrician last week who told us the muscle biopsy came back clear which is great news x he told us that Callum will always have low muscle tone and things will always be hard for him, he will also need to wear splints when he walks.  They also discovered he has a heart murmur which they think may be caused by his muscle tone so got to go back in two months about that.  We are awaiting a walking frame with wheels to help him learn to walk. I really can't believe he's going to be 2 in December but,  No matter how hard things get or how upsetting things are we are lucky to have Ronnie and Callum and I am going to enjoy every moment with them
Both xxxx

Overload

Well what a week, Callum had his muscle and skin Biopsy and grometts last Thursday. He did really well and has recovered fully. We now have a 2 to 3 month wait for results. We had cheek biopsy results back which were clear so that was positive news.
Ronnies ear has been fine since his grommet was taken out two weeks ago do that's good. I took Ronnie for his appointment with the consultant about his toe walking this afternoon, he's been doing this ever since he started walking. He's had physio and exercises to do but nothing has worked. So today he has had half leg casts put on both legs to break the habit. These will need to be changed every week and remain on for 6 weeks. Poor little chap, he's been so good about it and taking it all in his stride. I honestly feel like I live at the hospital. It's not the best timing either with him just starting school and he's just joined a local football club. We will make the best of a difficult situation, and hope that this does the trick. Would love to know when and if things are going to get easier and less worrying xxx

Ronnies First Day at School

Today was Ronnies first day at school, I can't believe he's so grown up! He looked lovely in his uniform and went in ok to start with but did cry when we left. It was a long wait to collect him as he does full days straight away. I didn't need to worry as when I picked him up he came running out and was so happy I am so pleased, we are so lucky to have got him into that school with all his friends x x
Ronnies ears have been causing him problems again and he ended up in hospital overnight with it a few weeks ago. We saw the specialist yesterday and he needs to have the grommet removed as its the cause of the continuos infections. He needs a little operation for that to be done, not very nice for him but will sort the problem out.
Callum started back at his special group today and we tried to do some painting with him but he got very upset when he got paint on his hands, he's very sensitive to textures but we will keep trying. He has progressed well recently and has started to sit up on his own and crawling a bit too. Both are fantastic to see and it's nice for him to be able to sit up himself now too. We are nearly 5 weeks into the 6-8 week wait for the results of his cheek swab, every time the phone rings my heart sinks. He's going to Bristol for his grommets and muscle and skin biopsies on 20th of this month do will be a relief to get that over with.
Still trying to keep positive and hopeful that whatever it is causing Callum's problems won't be to bad.
Very lucky to have such lovely boys and so proud of how well Ronnie did today at school xxx

Tough Times

It's a been a tough few weeks since my last blog. Callum's genetic photos have now been looked at, they want to look at a specific chromosome now in more detail and have found a rare syndrome which they think he may have and be the cause of all his problems. He had a cheek swab done today, the results will take between 6-8 weeks to come back. We saw Callum's paediatrician on Tuesday and we went through each of Callum's problems together. His length was measured and he hasn't grown in length at all so we have been referred to a growth hormone specialist now too. Callum needs to have some blood tests done to check his growth hormones are ok, he had to go into hospital for a morning and go on a drip and have a blood test taken every 30 minutes. If Callum does have this syndrome they can't do anything about his legs not growing. Callum isnt talking and they think this is because of a genetic problem aswell so we have started using sign language with him now.
We are still awaiting a date for his grommets, skin and muscle biopsy, it's taking a while to organise as three people have to be available at the same time to each do there own thing.
As much as I want to find out what's causing all Callum's problems I almost feel as though I don't want to find out, as once we know that's it then, forever, he will always have it and we will have to face up to it and accept it. Certainly struggling with it all, I feel consumed with tests, appointments and waiting at the moment. Perhaps though we are a bit closer now to finding out what the future holds for our darling little boy xxxx

Tough Day

Had a hard day today, Callum has changed groups at his special needs group, the realisation that things may always be hard for Callum has really set in with us. The specialists think his problems may be caused by either a genetic problem or brain problem. He has to have a muscle biopsy and skin biopsy when he has his grometts put in, they also want to take a mouth swab for his DNA to look at a specific chromosome. He went in a stander today for the first time and it broke my heart to see how much support he needs just to stand up. I am grateful for all the help and intervention he gets it's just so tough. We also have to start teaching him sign language as he's not saying anything and it will help him and us to communicate. We also have fortnightly visits from a lady who helps bring his development on through play. We have his shoes now as well which was for the purpose of going in the stander. I find it so difficult and almost feel like its happening to someone else, not that I would want it to, I suppose that's just my way of dealing it. The specialists have said that as he gets older it will be more obvious that he has problems because he is so delayed with his development.
I came out of his group today and bumped into someone I went to primary school with, I burst in tears and felt so bad afterwards she didn't mind I know, but it's hard to fight back these tears at the moment.
I suppose that for a long time we thought Callum would get better but as time goes on we think differently, and it's so sad to think of him at 8 or 9 or 20 and still having problems. All I know is that we will do whatever we can to make him happy and give him a great life.
We have had great piece of news last week, we won the appeal to get Ronnie into our first choice of school we are over the moon, it's such a massive weight of our minds and he's so excited too. It really did give us a boost. So on we go keeping positive and fighting back those tears xxxx

A lot to report

Not done my blog for a while, a lot has happened in the past few weeks. We have just had a lovely weeks holiday in Bournemouth which has really helped us all feel more normal again.
Callum started to become unwell the week of the Jubilee, just a temperature but nothing else, on the Saturday he was poorly overnight and wouldn't eat or drink. On Sunday we were told to take him to hospital and he was dehydrated and they couldn't find anything else wrong. He stayed in for two nights and had to have a feeding tube put down, they discovered he had a bad ear infection which was causing everything else. They sent him home on Tuesday with antibiotics but he was still not eating. I was worried taking him home as he still seemed so poorly. We did our best to keep him drinking on Wednesday but he was sleepy all day so I took him back to drs, they told me to bring him back in the morning. He was no better in the morning so the dr sent us back to hospital. When we got there the nurse went through everything and tested his blood sugar which was very low at 1.6 it all happened very quickly after that with drs and nurses rushing around us, they had to get a drip in with sugary fluids and gave him some high sugar gel to boost his sugar levels, it was so frightening. We were then moved to a ward where they checked his blood sugar every hour, Thursday night felt the longest night of my life, I really thought the worst, by the morning his blood sugar had dropped again so they had to increase his sugar in his fluids, they also put a feeding tube down again to try and get his tummy used to eating again. We stayed in Friday night as well and his blood sugar levels became stable, on Saturday the drs said we were ok to take him home and explained that he has a condition which means when he is poorly he can't maintain his own blood sugar, we have got our own testing kit to use if he isn't eating or is poorly, and if it goes below 3 we have to give him the sugary glucose and take him straight into hospital, they have given us open access now.
It's taken a while to sink in and I feel like its another thing to worry about with Callum, we will get our heads around it but added to everything else it's just a lot to think about.
It's been such a traumatic time recently so our holiday really came at the right time, it's been nice to have a break from everything. It's hard coming back to letters from the hospital and specialists as its all very real again, We are still waiting for a date for Callum's grometts and biopsies as there's a problem with the funding for it, so got to sort that out now we are back too. I just hope that once the biopsies are done we will have better idea of what's causing all of Callum's problems.

Not how we planned our Jubilee

Unfortunately Callum had to go into hospital Sunday he was sick Saturday night and couldn't keep fluid down on Sunday and was really poorly, he had to have a tube down his nose and throat overnight to rehydrate him, Monday he was even worse and they discovered he had bad ear infection and as he has glue ear infection going into his tummy, so they gave him antibiotic injection and antihistamine. They sent him home yesterday with antibiotics. I took him back to drs earlier has not drinking much and high temperature again, I have to take him back in the morning. He is not eating but they said as long as he is drinking that's the most important thing at the moment. Fingers crossed for an improvement over night.
Ronnie has been so good, I stayed in at night with Callum and the Steve came in the morning so we were both there with Callum, ronnie had a lovely few days with our family and didn't miss out on anything so that was nice. He is such a kind little boy and said this morning I don't like it when my brothers poorly mummy xxxxx

Crystal Ball please

I am now fully recovered which is great, the best thing is being able to lift the boys up again. We have had a few appointments with Callum, we saw the ear surgeon in Bristol on Friday they said his problems are hopefully just caused by glue ear, so they are going to put grommets in both ears and retest his hearing once it's settled down again. They think that this is affecting his lack of speech so once that's sorted I am sure he will start saying words. He is also going to have a muscle biopsy at the same time. This leads onto today's appointment with the paediatrician, the blood test results that are back so far are normal so that's good news, we are just waiting for the muscle enzyme tests to come back now. He is very puzzled by Callum's problems and is not sure what's causing it, it may be that it's a genetic problem which is why we saw the genetic specialist. The paediatrician is going to speak to him and a neurologist to find out if any further tests should be done at the same time as his grommets and muscle biopsy. Callum is still very floppy, unable to stand and unable to move from a sitting position so it's quite difficult really. A positive thing which came out of today was that Callum's understanding of things is good, he can point, wave, do patter cake and do round and round the garden on his own hand, when you ask him too. I do find it very difficult not knowing what is wrong with Callum and we now have to wait for all these other tests to be done to find out what's causing it, I wish I had a crystal ball so I knew what was going to happen. I have unanswered questions flying around my head all the time and I really hope that in the not to distant future we get answers to them, then we can deal and manage the situation a bit better.

Nearly Recovered

Doing really well with recovery from hysterectomy, able to drive now and only 8 more days until I can lift things, most importantly 8 days until I can pick Ronnie and Callum up again it's been torture!
Ronnie is doing really well sleeping till atleast 5:30 every night and is dry most nights too so that's great. He is doing really well at football, which Steve takes him to every Saturday morning, it's so nice to hear all about it from him when he gets back.
I took Callum to his group on Monday at the special needs nursery, he is making progress and has started pointing now which is fantastic. It's easier to know what he wants know as he points to his drink or a certain toy he wants to play with. He is definitely more interested in toys now as well.
We had an appointment about his squint on Thursday and it's no worse so that's good, we have to see a paediatric eye specialist in a few weeks to check everything. He has also been referred to a teaching advisor about his hearing so that will be helpful. We are going down to Bristol on Friday to see the ear surgeon to decide whether he should have grometts or hearing aids. He had more blood tests last week as well they are checking his thyroid again and checking his levels of minerals in his blood as some syndromes affect these levels and that could be the reason for his low muscle tone perhaps?
We took him to have his feet measured again today but they still haven't grown, so we bought him a nice new outfit instead!
We had the school placement offer for Ronnie last week and sadly we did not get any of our 4 choices do we are starting the appeal process soon. I do wish that we could have some good luck our way soon! I am doing my best to keep positive with it all, and i think when we know the exact cause of Callum's problems it will be much easier to manage. When this school business is sorted that will reduce the load as well. I know I stopped saying it but...... Fingers crossed with it all x

Highs and Lowd

Recovering well getting stronger again so that's great. Steves been home all this week and we really have had a lovely time altogether. We have had highs and lows but sharing the lows is always easier. On Tuesday Callum had his medical photos taken which left us feeling rather fed up, its not a nice thing to have to do but of course it will benefit Callum in the long run. They have sent the photos off and we now have to wait for the 5 specialists to get together and look at them and see what they come up with.
On Wednesday we took the boys to a big soft play place, they had a cafe so I was able to rest there while Steve played with the boys. We took them to the toddler part as soon as we got there as we thought they could play together in there. As soon as we got in there I suddenly realised that this would not work with Callum, I sat him down and was surrounded by lovely children, younger and older than callum crawling, walking, talking and interacting with each other and tears started rolling down my face, it was so heart breaking to see my darling son so isolated and helpless I have never felt so awful, I felt guilty almost for taking him there. Ronnie was having a great time which is what we want of course but it's ever so hard as they are brothers and I wanted them to do this together. In the end we decided that Callum could stay with me in his pushchair and Steve would take Ronnie for a big play up. Callum and I had a lovely time together playing with his rattles and things, he likes it if I put something on his head and laughs when it falls off! It's just I feel he is so isolated at the moment and separate from other things. Yes he is happy which I am so grateful for its just not what I had planned for, but all the time with Callum we realise that we have to adapt things to suit him and we will. I think not knowing what the future holds or indeed what the reason for all of his problems is makes it tougher all round. On a Positve note I couldn't ask for a more fantastic husband who makes all of this bearable, his support is fantastic Callum ronnie and I are so lucky to have him xxx

Recovering

Well, what an uncomfortable few days i have had, operation went well and was looked after very well in hospital. Came out last Thursday and am today finally starting to feel brighter in myself and not in so much pain. Just think in a few weeks, I will feel like a new woman.
Since home I have had so much help with the boys and everything round the house so, I really am very lucky.
Ronnie and Callum have been really good with it all and Ronnie is so kind he keeps doing things to make me better.
Had a bit of disappointment with Callum, we went to collect his new shoes on Saturday and when they put them on they were too big, they remeasured his feet and they were not on the scale. They had measured his feet incorrectly the last time we were there. In normal circumstances this would be frustrating but in ours, we found it quite upsetting. Onwards and upwards in 4 weeks they hopefully will have grown. We also saw the genetic specialist on Monday, he was really nice and went through everything with us, he has arranged to have some photos taken of his hands, feet and face and then five other specialist will then have a look and see if they have any ideas on any specific syndromes. He did say that it can take years before you find out the specific diagnosis. The main thing is Callum is a happy content little boy and he knows no different. We are concentrating on what he can do and keeping positive xx

Feeling rough

Had a rough few days had a migraine and sickness Tuesday morning, feeling very wiped out still, got some antibiotics from dr as have infection too and need to be at my best for Monday's operation. Have had a nice few days with the boys, ronnie gave me two of his cars to keep by my bed to make me feel better he is so caring and it did make me feel better!
Still waiting to hear about all of Callum's appointments but am quite pleased we don't have any dates yet as I can put it to the back if my mind for now.
I am afraid I have started smoking again after 6 years, finding everything with Callum such a worry, and as I don't drink needed something to help, it's not the answer I know and will definitely not be a permanent thing, I just felt I had reached my limit with it all two weeks ago.
Really panicking about my hysterectomy on Monday so nervous, I know after I have recovered I will be so much better off, I have had lots of minor operations over the years but nothing major. Looking forward to a fantastic weekend with my amazing family xx

A lot on plate

Had a good week, ronnie on week five of sleeping through, I can't believe how much better I feel!
All going well with Callum, we saw the ear surgeon on Thursday who said he is a bit young for grometts so he would have to have hearing aids in both ears, she has referred us to an ear surgeon in Bristol to make the final decision as he would have to have the operation there because of his low muscle tone and the anaesthetic. Bit of a waiting game again now really, I spoke to his paediatrician to update him. He is going to take more blood to retest his thyroid and then store some blood ready for the genetic specialist.
Not sure what will happen with his ears, I don't want either to happen but obviously want what is best for Callum.
Keeping up with my positive approach though, it's all to much to manage, and on a relieving note Callum's second brain wave test came back normal so that really is great news. They think his arching is associated with his silent reflux and he will grow out of both.
I had my pre op appointment today, just going through the procedure, would rather not know really, but sensible to know what's going to happen, not looking forward to it or the recovery afterwards either, got some much help from my amazing family so am very lucky.
Wishing you all a good weekend xxx

One day at a time

Lots to report: since my last post I have had a great day out in London, me and my brother went on Saturday, we went to Camden market and then Covent garden, where we had a lovely lunch. It was so nice to have a day away, I felt like I had a break from everything that's going on, so just what the doctor ordered!
Callum is continuing to progress and is really mastering his sitting. So much so that we are trying in ronnies Hugh chair to see how he gets on, we also bought a bath seat and mat, which we used for the first time last night, it's amazing to see him sat up playing and splashing about. Words cannot describe how happy we all are that Callum is making progress. The fact that I am now focusing on what he can do rather than what he can't has really helped too. I also think that having a day away from it all has given me a boost too.
Ronnie is still sleeping until between five and six each night and is dry every night now too. His behaviour had settled but it has started to become quite challenging this last week or so again. I notice that the earlier he wakes the worse his behaviour is, so at least I can prepare myself on the days he wakes before six!
I am trying not to think about my looming operation in two weeks time, I am having a partial hysterectomy as I have had terrible problems, I am dreading it, but I know after I have recovered I will feel so much better.
I think it's the fact that there are so many big things going on for us that's hard to manage, but one day at a time is the best way to manage it.
I am also worried about Thursday when we see the ear surgeon with Callum. I think it's because he has to have all the other biopsies and tests done at the same time as he has the operation for his grometts, its having to face it all again. But my motto of one day at a time comes to mind as I am writing this. Until next time xxxx

PMA

Have had a good few days, Ronnie still sleeping through the night and Callum is doing really well with his sitting. Going to try and be more positive from now on and try and keep my worrying at bay, not easy with everything going on but going to give it a try. Going to concentrate on the good things that Callum is doing now and stop worrying about what he is not doing. One week at a time is the way forward, I always tell my friends to have a positive mental attitude so am going to take my own advice! Callum did well with his group on Monday and we have some more exercises to get with to help his sitting. Today we went to the eye clinic at the hospital to see how Callum is getting on with glasses, she said he is doing well keeping them on, his squint is still visible whilst he has his glasses on so we have to go back in 8 weeks to see if a patch is needed. We are so pleased with how much more alert Callum is now with his glasses and I have got used to him wearing them now, in fact he does not look right without them now. We have got hydrotherapy for Callum tomorrow so he will enjoy that. I am looking forward to Saturday, my brother and me are off to London for the day, so excited, got lots planned too. Until next time x x

Constant weight on shoulders

Have been finding things quite difficult since Tuesday's phone call about doing more tests on Callum. It's just like a constant weight on our shoulders.
We have to keep positive and remember how well he is doing especially with his sitting.
I just sometimes feel overwhelmed with it all. I have so much help and support with family, friends and all the support groups which really does make it all so much easier.
I think because things have not worked out how I had imagined its quite difficult to manage, but of course we do manage, Callum is a joy to be around and is so happy and content. I will get used to all the appointments etc that take place on a weekly basis and I know that after these tests have been done the weight will feel a little bit lighter.

Wild moment

Had a good few days, ronnie is continuing to sleep through the night so that's made a massive difference to us all. Callum's brain waves test went off ok on Friday, he was very good and sat still for twenty minutes, we will get the results in a few weeks.
I had a wild moment on Friday and saw that the VFestival tickets had just gone on sale, so I attempter to buy two day tickets to see The Stone Roses without even thinking I would get them, but I did and I am very excited about it! Will be nice to have something to look forward to and it's something I have always wanted to do, so want to do it before I get to old! I am going with my brother as we would not want to both be that far away from the boys so Steve will have the boys. I am already planning my festival outfit!
Heres to a positive week

Keeping Positve

Had a tough few days since Tuesday.
Callum is having a brain waves test tomorrow as he makes some unusual movements sometimes, we won't get any results tomorrow but at least it will be done.
I have been enjoying this spring like weather with the boys, it's nice to just get outside and be in the sunshine!
Ronnie is doing so well with his sleeping he has woken a couple of nights but has gone straight back to sleep on his on in his own bed so that's made a massive difference to all of us.
Keeping positive for tomorrow and the next few weeks.

A phone call .....

Well not the best of days really, had a phone call from Callum's paediatrician who had just received the same letter regarding Callum's hearing that we received yesterday. He said that looking at all of Callum's problems combined (his developmental delay, low muscle tone, poor eyesight and hearing it must all be linked together and must be caused by something. So he wants to do more tests; when Callum has his grommets in he wants more blood tests to be taken for the genetic specialist to do tests on and wants calling to have a muscle and skin biopsy. Callum is having his brainwave test on Friday at 2 now as well. Shocked and worried, just don't know what to think now. Got to keep going and keep positive x

Back on the roller coaster

Had a lovely few days, Ronnie is continuing to sleep through the night and Callum is doing so well with his sitting. We keep thinking oh yes he can do this now he is sitting.
Have certainly experienced a lot of people staring and making comments since Callum has been wearing his different glasses I really wish people would keep their opinions to themselves.
We went to his group today and they were all pleased with him again, I was a bit worried as we checked to see if his feet had grown at weekend but they are still not on the scale yet, but they said he does not need shoes yet as he is not walking, so that made me feel better about it.
I do feel all jumbled up with it some times with appointments here there' and everywhere and then arranging and chasing up the follow up appointments it feels endless. Then you get letters about previous appointments which fill you with more worry, when things are on paper they do seem more real don't they? Perhaps in time I will become more used to this side of our life at the moment it still all feels very new. One thing is sorted another thing comes up, I am back on that roller coaster again I think x x

A new door has opened

Callum sitting up is brilliant x i took the boys to park again this afternoon and ronnie rode his bike. Ronnie was going down the slide and I got Callum out and slid him down while holding him and he loved it, he sat at the end of the slide while ronnie came down, it was so funny! Then we moved onto the swings and I put Callum in on his own for the first time he could not believe it and was squealing with delight. I know this all sounds like basic stuff but I did not allow myself to think about Callum doing all these things invade his muscles did not get any stronger, but they have and look at him go!
Went to see consultant today and they have said only option left is partial hysterectomy so lots to think about but not worried about it at all, after all the fantastic things that have started happening with Callum nothing else can worry me now. Looking forward to a great weekend x x

Ronnie is growing up

Ronnie woke up at 1:30 this morning and I thought if I am back asleep by 4 I will be lucky, but he went straight back to sleep again on his own. I went back to bed and thought he will be up again soon but we all woke up in our own beds just before 6 this morning. Had a lovely day, I took the boys swimming with mum today and it was so nice, callum wore his glasses in the pool and this made a big difference to his reactions, he was so excited and did not stop splashing the water with his hands, Ronnie was laughing his head off. Ronnie had his ear plugs and head band on to stop water going in his ears but you still have to hold him up so he doesn't get covered in water which is quite difficult! Later on after Callum had had a big sleep we went for a walk to the park, Ronnie went on his bike and I pushed Callum in his push chair, this is the first time I have done this combination on my own so I was a bit unsure, but it went so well, Ronnie was really good and stopped whenever I asked him to and he rode his bike really carefully.When we got to the park he climbed up everything and asked me to help him on the firemans pole but we both realised at the same time that he didn't need my help any more, I obviously stood really close just in case but he jumped and twirled down the pole, it was at this point I realised that my little boy is growing up!I am going back to see the consultant tomorrow so will be interested to see what they have to say, not looking forward to it to be honest, wish me luck x x

Brothers

A lovely start to the day Ronnie slept all night again, think we have cracked it! My parents came over this morning to see The boys and they saw Callum sitting properly for the first time. He sat and watched me and Ronnie do some puzzles, mum and dad were so pleased. I spent a lot of today sorting out all of Callum's next appointments, so feel a bit more sorted on that front now. Ronnie went off to Pre school happily today and is getting into the routine of it all now. He is making friends as well now and comes out with the funniest things. His behaviour since he has had his grommets back in and has been sleeping all night has been so much more manageable and he does seem a lot more settled. I am so looking forward to seeing Ronnie and Callum interacting together, there is so much to look forward to with them both, it's odd I have not really thought of them as brothers before, of course I know they are but yesterday after seeing them sat together for the first time, I could see how protective Ronnie will be of his brother, and what special times are ahead for them and us. I collected Callum's new glasses on Monday and they are so much better for him, whilst they don't look as nice as the other ones, they fit him so much better and are more suited to his needs, if he pulls them off they don't bend and are much better on when he is in his pushchair. I will get used to him in them, the most important thing is that he can see so much better now x x

Magical Day

Well what a fantastic day I have had, today Callum sat up really well on his own for long, yes long periods at a time. I am so excited it is truly an amazing feeling, I have been texting my family photos and videos of him doing it all day, I have even contemplated putting it on YouTube, but settled for attaching a photo on my blog. The best part of today was when Ronnie came home from preschool and I sat Callum on the floor and said look Ronnie, look what Callum can do, and he said look mummy Callum is sitting up on his own!

Then for the first time they sat on the floor together and played with toys together. I have spent the day sitting Callum in different places, he was able to sit on Ronnies bed, he sat up in the bath properly, he sat up on my lap and had his milk before he went to bed and even sat up and had his hair dried! It has opened up a whole new world for him, his mummy and daddy,his brother and all his wonderful family and friends. What a magical day x x x

Up and down

Another sleep filled night Ronnie did not wake till 6 again, we had a nice relaxing morning. Callum had a big sleep before his group this afternoon and Ronnie and me had some time together. Ronnie went to Pre school at 11:30 and then me and Callum went to his group. They were really pleased with his progress with his sitting and I told them all about his train ride yesterday which they thought was great. It was nice to see everyone again and Callum is getting to know everyone there now too. I am thrilled with Callum's sitting and we have to keep up the hard work it's an ongoing process. Callum's physiotherapist is going to refer him to have some shoes made for him as his feet have not grown much and we are unable to buy proper shoes for him as his feet are so small they can't be measured on the scale yet. In the next few months they want to start putting Callum in a stander to get him used to weight bearing on his legs, and in order to do this he has to wear shoes before he can start going in a stander frame. Feel a bit up and down with it all today, it's hard because I still don't feel I have quite got used to it all with Callum. I have not come to terms with the fact that each milestone for Callum is going to take a lot of additional input. It's hard because I keep getting glimmers of normality like with his sitting but I forgot that In order to get him to the next stage we have to start the whole process all over again. But like I keep saying, progress is progress. It's a tough situation like everything you will have good days and bad days x I have my scan tomorrow so am hoping all will go ok with that x x

Day Out

Had a great day, Ronnie slept till 5 so that is a whole week of uninterrupted sleep, so pleased I can't tell you what a relief it is to have sleep filled nights.
We took the boys out for the day to the Cotswold wildlife park it's our favourite place to take them. It's the first time we have been since Callum got his glasses, he really enjoyed it but I did find it difficult to look at things or get his attention to look at something. They have a lovely train that goes round the whole park, Ronnie and Callum sat in between me and Steve, it was so funny when we went through the tunnel it went all dark and when we came out the other end Callum's expression was hilarious, he had his mouth wide open as if to say what on earth was that all about mummy? He really couldn't believe his eyes.
All back to normal routines tomorrow, Ronnie back to preschool for afternoon session while I take Callum to his group, they will be pleased with him.

Here's looking to a good positive week x x x x

Progress

Ronnie broke his personal best last night and slept till 6 for the sixth night in a row. Everything is so much easier after a full nights sleep. Really hope that we have done it now with Ronnies sleeping, it's taken well over a year for us to get to this point. And long may it continue.
Callum has been doing really well with his sitting today and since wearing his glasses he has become a lot more alert and aware of his surroundings. He also recognises other members of our family now which is so nice for them and us. We sat Callum up on the floor with some cushions behind him and he likes to get two ring toys and knock them together, he laughs and waits for us to laugh as well.
It's odd because with Ronnie I received weekly emails detailing what he should be doing at this stage and what I should be doing to help him, but with Callum I find myself deleting them before reading them, as I see no benefit in doing so. I know that when Callum starts doing something for the first time he is doing it later than he should be, but it is still progress and to be able to use the word progress when I talk about Callum is fantastic, long may this continue too x x

Keep Galloping

Ronnie slept till six again that's five nights in a row can't believe it that's the most he has done in a row. Will he beat his personal best tonight, not going to say fingers crossed as we know that doesn't seem to work for me!

We saw the paediatrician this morning with Ronnie and he said that his behaviour is fine and whilst challenging, is normal. I am so relieved because as his mum I thought it may be something I was doing. He has given us some good ideas to help manage his behaviour going forward. He also said that because Callum has additional needs and is not mobile yet it's hard for Ronnie to get involved, but we will get there and as they both getter a bit older these challenges will be replaced with different ones.

We also had a quick chat about Callum, we had asked him if their was a specialist that deals specifically with Callum's problems and he has suggested we see a genetic specialist who deals with low muscle tone. So that will be interesting to see his thoughts on Callum.

Then this afternoon was my second visit of the day to the hospital regarding the infection. I have to be seen by the consultant next week with my scan results (which is now on Tuesday) to discuss the plan. They said they might have to repeat the previous operation! Not even thinking about that prospect been prodded and poked way too much over the last few weeks, so I am putting my blinkers on and going to keep galloping and jumping those hurdles without crossing my fingers. X x

Enter your pin please!

Had another good start to the day Ronnie slept till just before 6 so that's 4 nights in a row, can't believe it!
Had a long appointment with the ironing board this morning which was lovely? Nice to be done now though and out of the way.
We went to the coffee shop in the village for lunch with my two sister in laws and their children, it was nice to get out and about and the food was yummy. We headed off to supermarket to get a few bits afterwards. Little bit on the hectic side, but when isn't shopping with two children? It was a bit like how many things can I do at once, picture the scene; at the check out R decides to take C's socks off and put them in his own mouth as I am trying to pack the shopping, give the lady my vouchers, remove socks from r's mouth before he chokes himself and then enter my pin please! Help me, could not get out of there fast enough. I always feel like I look like I am not in control of my children, but am sure all mothers and fathers can empathise with this and know that feeling.
My day would not be complete without a visit or phone call to the dr about my infection. Today I tried to sort out my scan, they can't get me in till tuesday so my doctor wants me to be seen by a specialist at hospital tomorrow afternoon. I really hope this appointment will resolve the infection once and for all!
Will be glad once we have been to see paediatrician with Ronnie in the morning too, I am sure all of his behaviour is normal will just be glad to get something else crossed off the ever growing list. Wish me luck x

Special delivery

Today started well, Ronnie woke up at just gone six again so that's three full nights sleep in a row, feel so much better for having more sleep. Still struggling with my Infection had to ring doctor again who has doubled tablets and chasing up scan its quite draining now. Had my friend And her two children over for coffee, it was really nice as she is great with Ronnie too. Then had an exciting delivery, my iPhone! Been thinking about it for ages and am so pleased with it already. This afternoon I went back to the opticians to choose Callum's new glasses, the lady had sent off for quite a few different ones, they are all not as subtle as the ones he wears now but they fit really well and are soft and flexible so will be so much better for him. It's just a shame we didnt get them first time, but in a way i am glad we have got used to him wearing glasses first before we changed them to ones which are better suited to him. The health visitor came out for her fortnightly visit and we went through everything that has happened in the last 14 days, when you say it all out loud it sounds like your making it all up and I do find it hard not to get upset in front of everyone, I just have to keep going and I know that the next 14 days will be a lot better x

Massive Slide Up

Have had a really nice day, started well Ronnie slept till just after six, he is doing well with staying dry seems to have two days on then two off. Went to cattle country today and the boys loved it, the last time we went was about six months ago and Ronnie has grown up so much since then. We went into one of the play barns and Ronnie wanted to go on the slide he went on last time, so I waited at the bottom for him and he did not appear and it suddenly dawned on me that he had skipped the smaller one to go down the massive slide instead...... he absolutely loved it and was so pleased with himself!
Callum went on a swing on our laps for the first time and kept laughing his head off. It was really nice to have a good day out.
Found loads of photos of when Callum was first born its so hard as it obviously reminds me of everything, like how he used to keep falling asleep whilst on his play gym, but at least now I know he gets tired and he goes up for a sleep. He gets so excited when I take him up for sleep, he spends so much time sleeping in his cot but i know he is comfy and it's what he needs at the moment.
Another busy day tomorrow x x

The straw that broke me

What a day, think the last 13 months has finally caught up with me. Don't think this infection has helped, back to drs today have to have scan now which should have been done whilst I was in hospital. Ronnies behaviour is quite challenging and as you will have seen from previous blogs, his sleeping is not the best. Our health visitor comes every fortnight to help with Callum and she has been really helpful with Ronnie as well. We are going to see a paediatrician with Ronnie on friday to discuss our concerns with his behaviour so have been writing down things so I don't forget anything when there. It's tough because whilst reading it back I feel so sad for him. Really worried about the outcome if I am honest. I dropped Ronnie off at his Pre school sports day this morning which he was really excited about and his friends were there so he was very happy. I came home to put Callum down for a sleep before I went to drs, pulled into my road and saw dustbin lorry, got out of car and went to bring bins in and a notice had been stuck on it, fair enough we had obviously put something in the wrong bin, then the bin man came and lectured me about it! I wanted to say after this week I am surprised the rubbish is not all over the front garden! And that was the straw that broke me today. But tomorrow is another day and I hope I feel less broken in the morning. I know I was in the wrong but today was not the best day for me to deal/cope with it, I feel I am at my limit.

Dizzy day

Had a good day, struggling with low blood pressure so been dizzy and felt really faint today. Ronnie slept well. He woke at 11:30 and I put him straight back to bed in his room and he went straight back off till 6:30 so that was another good nights sleep. Had a lovely lunch out and took the Boys to the park, Ronnie jumped in every puddle going! Callum loved it too it's good for him to be outside too, it's nice for Ronnie as I tell him Callum is watching him and he likes that and says when your big like me Callum, you can do this! It was nice having a quiet day altogether after this week, it's haf term next week so no groups for Callum and Ronnie has got an activity sports day at Pre school tomorrow which will be just what he needs. Here's hoping for a good week, I am going to spend it recharging and keeping positive, it's strange almost feels like its a new start after Callum's operation and the fact that it went so well, a massive weight off!

Calm days ahead

Callum's operation went really well and was only superficial so that was a great relief and we now feel like a weight has been lifted. We came home the same day and it was like he had not even had anything done.
Unfortunately I ended up in hospital on thursday night with another infection from an operation I had a few weeks ago, my lovely brother who lives round the corner took me in, through the snow and waited with me till I was admitted to a ward so kind of him. I felt so poorly but came home today so nice to be home! My whole family were great as they always are, helping and sending messages of support, we are so lucky. Ace to be home with my boys. What a week though, everything seems a lot easier now Callum's operation is over and back to normal so quickly. Going to enjoy some calm time while it lasts x x x

How many hurdles

Ronnie woke up at 6:30 so that was a fantastic start to the day and very unexpected! Took the boys for a coffee before I took Ronnie to Pre school. I spent the afternoon sorting out everything for Callum's operation tomorrow, it's down in Bristol and we may have to stay in. I am dreading it, it's only a minor thing but am so worried about him having an anaesthetic, but he is in the right place. I took Callum to his hearing appointment this afternoon, we waited outside for a bit and I knew this was going to be an appointment with a good outcome. When we went in they had to repeat his hearing test, they play a sound whilst distracting him with a little toy. They played a sound, I was willing Callum to turn his head to the sound but he didn't, maybe the next sound he will turn his head, no this went on and on, sometimes he turned to the sound but other times he did not. The lady came back in and checked his ears, glue ear is still there so he has to have grommets now and whilst he is having them put in they will check his hearing again, if the grommets have not improved his hearing he will need hearing aids. That was not what I was expecting at all, I know having grommets is only a minor thing but when you add all these things up for Callum it's such a lot. I just wonder when all of these minor problems will stop coming, I have to keep positive it is just so hard and draining, I feel really upset about it all at the moment and I look at Callum and just hope hope hope that he will be ok one day. Next hurdle is tomorrow will feel better after that is done and then we can go to the next hurdle. Need to muster up something from somewhere to get me over the next few x x x x

Tired Out

Had a bad night, Ronnie woke up at 1.30 and was awake for a good few hours so v tired again today. Ronnie went to Pre school this morning and I took Callum back to play group which he enjoyed, he was tired by 11 so took him home for a sleep. After I collected Ronnie we went into town to get all the bits I will need for After Callum's operation on Thursday. Got his glasses fixed again, they don't seem to last more than a day before they need repairing, hopefully the new ones will be much more flexible and more suitable for Callum. I met a lovely lady in town she had the same push chair as Callum's it was really nice to chat to another mum it felt like we had so much in common before we even began talking to each other. It was good to talk about things with someone who has similar experiences. Another appointment for Callum tomorrow about his hearing, fingers crossed for that, if I had a pound for every time I said that I would be a rich lady! Here's hoping we have a full night sleep tonight? ..... Not likely, more tomorrow x

Rollercoaster

Better start today, Ronnie woke up just after 5 today, he has recovered very well from having his grommets in and says he can hear things better, he also often now says that things are too loud for him, it must be an odd feeling. He went back to Pre school today has not been for a while so was a bit worried he would be upset when I left him but he was fine going in. He goes from 11:30 to 3:30 on Monday's which fits in with Callum's group at the Special Needs Nursery. Callum is doing well with things and as I said he waved on Saturday which was amazing, I keep asking him to wave and he claps his hands but like they said at the group he is following an instruction. We went through A development review today for Callum and I was asked what our next aim would be for Callum, I said I would like him to sit up on his own. They have said that that is a realistic expectaton but he is quite a way off that yet so we need to break it down into small bits, so to start off with he has to sit propped on a special lap table to get him used to propping himself when he loses balance. We tried it and it's so hard because he doesn't like doing it, he gets really upset and I just want to pick him up but I have to see past that. Eventually they want to see him doing it for a minute but he will obviously start of doing it for a few seconds. This really is hard, it's such a long process for A milestone that I just took for granted he would meet at the normal age, Callum is now 13 months. He gets so tired after trying to sit up he was trying to go to sleep on me, it makes it harder as you only have a few chances throughout the day to stimulate him and do his exercises before he gets to tired. This did leave me feeling flat and not in a very good mood, it makes all the other things I have to do for the rest of the day more difficult and I really did feel like bursting into tears and shouting why has this happened to Callum? But you can't do that you have to get on with it and carry on with being a good mummy to both Callum and Ronnie.What I have realised about Callum and his progress is that it is a roller coaster of emotions, Saturday I felt great today I do not feel great. The other thing I thought was how lucky Callum is and me to have the Special Needs nursery looking after Callum and working out step by step how to get him to sit up on his own, they are fantastic people and so clever, yes it may take time but I really think he will do it, fingers crossed.

04:30am start

Well we are used to waking up early as Ronnie does not sleep very well, so we have all been awake from 04:30 this morning so v tired! He goes off to sleep ok it's just when he wakes up he can't go back to sleep, I put him back to bed and he gets up again straight away so by half five we said it was morning any way so he came in our bed. It's really difficult as I have said before we have got a clock which shows when it's time to get up, this is set to show 6:00 as time to get up so I thought for the sake of half an hour is it worth it? It is so important to get some sleep after all. We get a lot of help from Callum's health visitor who comes to see us every fortnight and she also helps us with Ronnies behavior and sleeping so it's good to have her on board. It's hard not knowing what is causing his sleeping problems and it's hard being so tired all the time as well. We just have to keep going and know its not going to go on forever.....? Had a lovely afternoon, lunch at a garden centre and looked round afterwards, then we called in to see my parents on the way back, we hoped that Callum would show them his waving but he was really tired so maybe next time. Just a short one tonight, fingers crossed for better night tonight, until tomorrow x x x

Waving Today

A good night sleep made a whole lot of difference, I won't deny I felt exhausted and drained last night but today I feel a whole lot better! Ronnie slept till just after five and was dry again so that's three nights out of five so that is going really well. Ronnie has made a really good recovery from yesterday so we all had a nice morning out and about, first stop was to get a sledge for all the snow we are going to have (I hope) and then we stopped off at Toys R Us to get Ronnie a little treat for being so brave yesterday. It was lovely to come home and put the fire on and just relax altogether. After a nice lunch, we went round to Steves mum and dads, had a lovely time and Ronnie played outside in the snow, he has been a real handful today, but as soon as he is outside he is fine he just loves charging about. Callum has been ok today been sleeping a lot again, he gets really tired so had a cuddle with him for a bit and then he perked up a bit again. When we left we waved goodbye to everyone and Callum started waving back, we couldn't believe it, it was amazing really out of the blue, it feels so nice to know that he is picking things up and he is taking everything in. When we got home we kept saying wave at mummy and daddy and he did! I feel like waking him up now and getting him to wave at me. When something like this happens with Callum it's so exciting and reassuring, as he has development delay and low muscle tone he is not really able to sit up on his own yet so I keep suddenly panicking thinking he is 13 months he can't do this he should be doing that etc, but now he can wave yes CAN I don't get to say or think that about Callum very much but from today He CAN wave. It's been a really positive day because of this, Steve and I spend so long talking and worrying about Callum's problems and tonight we have been able to talk about how great it is that he is now waving. It was so nice that Steves mum saw him doing it for the first time, I have videoed him doing it and emailed it to my parents and put it on Facebook because I want to share this happy moment with everyone close to us. We get so much amazing help and support from everyone close to us And it is so special for them too when we have moments like this with Callum. What a fantastic day, really happy, I wonder what tomorrow will bring?

Brave Little Ronnie

Well today went well, Ronnie was so brave he had his grommets in but did not need to have his adenoids out so we were home by 2 O'clock which was so much better than I expected. He was really good whilst we were waiting to go down for the op and he had some nice little presents to keep him occupied. He went of to sleep really well, I bought a book a couple of weeks before we went in about going into hospital and it explained about having the gas to make you go to sleep, this really helped and he wasn't frightened and just led there and drifted off. I got a quick latte and then waited for the nurse to come and get me, it didn't take long before she came back and took me down to recovery. He was really groggy when he woke up but settled after some stronger pain killers. When we got back to the ward he was fairly unsettled, I cuddled him until he went back to sleep and when he woke up Daddy had just arrived so it was perfect timing. I knew he was alright when he started asking for food - sausage, chips, quavers ribena. Then he got dressed and we were able to take him home. Callum was fine when we got back and had a lovely time with mum, it's funny the first thing Ronnie said when he woke up was "I want Callum". Looking forward to relaxing and recharging the batteries this weekend ready for Callum's operation next Thursday. Fingers crossed that Ronnie is over the worst now, Until tomorrow xx

A sneaky plan

Bit tired today, the Rocket woke at 4.30 had to change him and he did not really want to go back off, tried putting him back till 5.30 but realised he was not going to fall back to sleep, so I came up with a sneaky plan; we bought one of those clocks that shows a rabbit awake in the sun when it's time to get out of bed and a rabbit in bed and a moon when it's time to stay in bed, I sneaked into his room while he was talking to daddy and switched it from night to day, Ronnie then said "the rabbit is awake though mummy can I come into your bed now"? so we went and had a look and yes the rabbit was indeed awake! It normally switches to time to get up setting at 6am so I thought half an hour will make all difference to us all, and indeed it did. A naughty little trick, one which I will not use often but sometimes when you are so very tired it is an essential one to have up the pyjama sleeve! Callum slept all night as usual and lays in his cot gurgling in the morning until I go and see him, it's such a lovely sound to wake up to. We have a video monitor and I could literally watch him for hours awake or asleep. It so nice and reassuring being able to see him while he is asleep. Have Been preparing for Ronnie's ear operation which was set for 12:30 tomorrow, the children's ward rang me at 3:45 this afternoon to ask us to come in at 07:30 instead. I don't mind what time we go in but it now means that Steve won't be able to come with us as he had arranged to have the afternoon of and had rearranged everything for the morning. Still just glad it's not been cancelled and he will be with us from 12.30. Fingers crossed that all goes to plan in the morning, I will be eating my breakfast out of sight tomorrow and have packed all sorts of nice bits to keep him amused whilst we are there. If his adenoids are removed he will have to stay in overnight so either steve or I will stay with him. So until tomorrow or Saturday I bid you goodnight .....

Caramel waffles

Day started well, Ronnie slept all night till 6 and was dry again so really pleased. Everything is so much easier after a good nights sleep. We went shopping today, boys were really good, had a nice coffee with them so that made a nice change, Ronnie is definately a fan of caramel waffles. Went to Opticians to get Callum's glasses fixed again, it's not easy keeping a pair of glasses on him, but this optician has come up with a good plan, they said they make moulded glasses for younger children which also have adjustable arms and they come with a strap already fitted at the back to keep them on, so hopefully they should stay on a lot better. Cooked a lovely steak for us all tonight as we have got a busy few days coming up, Ronnie going in to have little ear operation on Friday and Callum is going to have an operation next Thursday down in Bristol, so making the most of normality while it lasts. Have felt positive about Callum today, do find it annoying when people stare at him though, have noticed people look at him more now that he wears his glasses. I am sure peoples hearts are in the right place. Onwards and upwards for another nice day tomorrow.

Good day

Felt better today, we all had a great sleep, Ronnie slept from seven till seven and was dry all night, so pleased thats the longest he has slept till for well over a year! I took the bots to play group - it was the first time that I have been when Callum was awake or awake but to tired (he gets tired as he has low muscle tone in his top half) Ronnie was playing with a toy which you put a lady bird on and it slides down the toy, I had Callum propped up sitting down leaning on me and he started watching Ronnie playing with the toy and another little girl came to play and he started watching her too, each time Ronnie put the ladybird down the slide Callim clapped....amazing! We sat down and did some singing afterwards at the end of playgroup, and Ronnie went and got us all a musical instrument each and we sat and sang, Ronnie was singing all the words and Callum was banging his tamborine and looking up at me and smiling.... a truly magical moment. Sounds like nothing but to me it was fantastic because for the first time this morning I felt like i was doing what I imagined I would be doing with my two boys and I forgot about all the appointments and worry and enjoyed playing with my boys without a massive weight around my neck dragging everything down. Seeing them interacting together even for a short time was so nice, nice because it was normal and normal for us as a family is not a word I would use to describe things at the moment. As fantastic and amazing this morning was it brought it home to me today how hard, sad and upsetting life is for us at this moment in time, and I just wish that things were normal all day every day with Callum and I hope in the future they will be x x

Shuffle Challange

I have been tempted into doing the shuffle challange by @farfromhomemama so here goes; Foo fighters - Walk Example - Changed The Way You Kiss Me Pendulum - Propane Nightmares What a mixture, I think I have come out of this reasonably well? Now to pass the ChallangeI onto 3 more people @mrsjenallan @allabouttheboys @jobedo68 Lydia x x x x

Bit of a non starter

Not started week well, had a little operation last Tuesday and have now got an infection. Did not feel well enough to take Callum to his group today. Hopefully will make it next week as long as Ronnie is recovering ok. Ronnie did well with sleeping, it was his first night without wearing a nappy to bed so he woke at four a bit wet but he went back off about an hour later after getting up four times, but each time I put him straight back to bed, so pleased that he went back off on his own eventually. I have put a cd player in his room to listen to stories on to help he go back to sleep but I have to say his favourite at the moment is classic fm! It makes me laugh when I go in to make his bed in the morning and classic fm is still blaring out. Callum was ok today had a little play with Ronnie and I even saw them laughing at each other, its nice to see snippets Of what things will be like in the future with them both. Our heating stopped working in the night which was rather chilly, luckily Ronnie and Callum were not cold and an engineer came this morning to fix it. Fingers crossed it stays that way, I can't stand being cold. Hopefully I will feel better tomorrow I don't like not firing on all cylinders.

Lovely Sunday

Great day today, Ronnie slept until 6:10 in his own bed so that was a great start for us, he has been waking as early as 4 And not going back off, or waking for two or three hours at a time in the middle of the night before going back off, so not being exhausted is always welcome. Callum sleeps very well. He wakes and just lies in his cot gurgling until we go in. Ronnie helped us tidy up the garden this morning, I am also new to this as well and am learning things all the time - I now know to prune/cut back shrubs before the frosty weather comes! Had a lovely Sunday lunch with our family, and Callum had his first liquidized sunday lunch and treacle pudding, he loved it. Ronnie enoyed it too and polished off all the carrotts after i explained how good they are for helping you see in the dark. We all spent some time outside in the fresh air which is so good for us and the boys, it also gives Ronnie chance to run off some of his energy, we are struggling with just how much energy he does have at the moment. Callum had a good hour of laughing and playing with us all today and has started repeating sounds to make us laugh, blowing raspberries seems to be his favourite. He also really watched the television properly, since having his glasses he has started paying more attention to it now which is positive. All in all a good day, got another eventful week approaching, Ronnie has to have little operation on Friday to put grommets back in both ears again and possibly have his adenoids out, will be glad when that's over and done with. Got Callum's special group tomorrow afternoon, he will enjoy that, will work on more sitting with the physio. Must always remember to think positive, things could always be much worse I suppose... Fingers crossed for another sleep filled night.

My first blog 28th January 2011

Since getting an iPad for Christmas, I have been using twitter a lot more and have started reading other people's blogs, and today I thought why not set up my own? So here goes, thought I would just write with about my days and how life is through my eyes. Today is Saturday, I love Saturdays, Ronnie my eldest has Football every Saturday morning which Steve takes him too, so I have just over an hour on my own with Callum. Callum has been sleeping a lot again lately so he goes for sleep and I caught up on a weeks house work. Loved it when Ronnie came home and started showing me all the things he had learnt, star jumps, squats and push ups he is so enthuasitic and you can see that he is picking new things up each week. Had my hair coloured and cut this afternoon was some much needed pampering after a difficult week. Hoping that Ronnie sleeps through tonight, we Have had about a month of better nights after a year of waking every night, this all started after Callum was born. It really has not been an easy twelve months. I had an idea of how my life would be and it has turned out so differently, I don't think anything can prepare you for having a child with disabilities. Days are filled with appointments, exercises, worries and what ifs at the momment. As Callum is my second I assumed I would do the same with him as I did with Ronnie - it is so different. My days are happy I love being with the boys it is just a different type of happiness, different to what I imagined. More tomorrow x x x