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
Thursday 22 March 2012
Friday 16 March 2012
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
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
Monday 12 March 2012
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
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
Thursday 8 March 2012
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
Tuesday 6 March 2012
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.
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.
Sunday 4 March 2012
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
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
Thursday 1 March 2012
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.
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.
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