Monday, 7 December 2009
then after that wonderful day life became a whirlwind, not a roller coaster as they are supposed to be exhilarating with a little scariness and then stop for a rest before the next adventure... our life has not stopped with a rest before the next adventure and there has been more of the scariness than exhilaration.
so for that reason i took a blog holiday, mainly due to lack of time but perhaps also due to not wanting to show how strong I am not. I set out with this blog to give my readers a realistic view of how life is and can be yet at the toughest of times I found myself crawling back in my shell and hiding my feelings deep inside...where they are safe therefore avoiding the sympathy vote and awkwardness that can follow when things are "different"
So a quick catch up..
Mikey has deteriorated somewhat over this summer. He had a PEG fitted which though expected to be the biggest problem has been a breeze... a couple of infections and a few tears and confusions from himself that comes with not being able to eat food that he so loves but all in all it has been a success and a big relief that he is getting the nutrients he needs safely.
Seizures are a huge problem, apparently they are harder to get under control as they are due to the neurodegenerative condition as opposed to epilepsy... either way they are yuk and they rip a small piece of my heart out each time as I cannot take them away from him..
His oxygen requirement has gone up though since leaving school (another story!) he is able to rest when he needs to so daytime requirement is not as bad as it was at one point. Hand on heart I thought he was slipping away from me and I wondered if Christmas was something we would be celebrating..
but Mikey has fought for what Mikey believes in and is enjoying the lights and festivities that go with Christmas. There is a hell of alot going on for him but as those who know us will know my saying.. "plodding on"...
I will attempt to get back into the blogging world as it is important for me to share our life in a true light, it's just sometimes it is easier to hide and bury my head deep in the sand.
but i do want to say thankyou to my friends who have been absolute rocks over the summer.. I don't think I would have got through the last four or so months without you. xx
Wednesday, 24 June 2009
Well, you may remember a recent blog post (view here) about Mikey’s love of motorbikes and the kindness of then strangers… well this Sunday these amazing people are popping on their bikes and riding hundreds of miles just to make my little boy smile. I so wish I could tell him now what is going to happen so he could share in my excitement now but there is not a way of making him understand so it will definitely be a huge surprise for him. There are around 30 bikes coming from all corners of our country and they tell me off for saying thank you but I can say it on here should any of them be reading THANKYOU from the bottom of my heart. It really is going to be a very special day for Mikey and in turn that is special for me.. so everyone else.. vibes, prayers or whatever for a safe ride for them all and that this sunshine sticks around too. ;-)
Friday, 12 June 2009
OK, I haven't quite lost the plot, I am aware that it is the 12th today but this time last year it was Friday the 13th and I am having a “this time last year” day.
I never used to be superstitious but this time last year I did begin to wonder if there was anything in it! It was Friday the 13th and we lived at number 13. Mikey was very poorly with a chest infection so the day started off as a normal day looking after little man and making him as comfortable as possible with a lot of fights with keeping his oxygen on him.
Then all hell broke loose at lunch time. A little background: we were having our bathroom changed into a wet room. as part of that asbestos was found. to cut a long story short this asbestos was disturbed in a bad way the Tuesday before this day and on this day (the 13th) a company was coming to do air monitoring tests, bearing in mind that myself and my sick child had been left in that property since the disturbance happened.
So two (rather cute as I remember lol) fellas turned up with equipment and a lab in their van which I was very impressed with being a science geek. This followed to events that will stay with me forever. At 1.45pm I was told that we had to leave immediately and could take nothing with us. I won’t go into details about the heartache that followed in trying to find somewhere suitable balanced with worrying about M’s present health condition but in the end we had to go 150 miles away to stay with friends, all we had was the clothes we were wearing, an 02 bottle for Mikey, his medications and a packet of nappies oh and my bank card and I sneaked my mobile and charger out in my pocket. I can’t begin to explain that terrible journey. I needed to get there as quick as possible but keep Mikey oxygenated at the same time. The poor child didn't even have any shoes on…we were proper nomads!! I had to push my feelings aside of losing everything we had in that property and concentrate on getting to where we were going to.
The days that followed were extremely hard and it was months before we were relocated to where we are now. I am forever grateful to the love and concern of all who helped us since this incident…with the practical things and the emotional turmoil. Those responsible for this mess are having to take responsibility for it which is why this all is a bit vague (legalities!) but nothing will ever make up for this time last year and the anxiety and issues in the days/months that followed and the concerns associated with asbestos exposure which we now have.
But… refocus.. need to concentrate on the here and now but is just a snippet into today's thoughts and thank goodness it is Friday the 12th today and not Friday the 13th!!
Thursday, 4 June 2009
What a day!!
Last Night I spoke with the epilepsy nurse and was so pleased to tell her the recent increase in M’s anti epileptic meds had worked. Boy did the seizure monster let us know the opposite today. On arrival at school Mikey had a biggy.. not tonic clonic… but floppy, drooling, eyes twitchy/gone, unresponsive. Hence ambulance was called and we spent the day in the hospital. They wanted to keep us but I made it plain that home was where we wanted to be and where M would settle best so home we were allowed. Seizures really scare the hell out of me. Perhaps three years ago as now they were unthought of of with M but the last two years they have definitely let us know they are unfortunately a part of his life and more recently they are evolving into different types and prolonged. I am awaiting arrival of a epilepsy monitor which will go under his mattress and alert me in the night to prolonged movement, peace of mind so I can get a couple of hours sleep knowing i will definitely be awoken in the event of a seizure. But now he has had this non convulsing “silent” seizure which took some shaking off I am again petrified. It is gone midnight as I type. M is fast asleep, I should be too so to be strong for whatever tomorrow brings or sleeping while i can before he wakes up thinking it is morning.. the bottom line is I daren't. I am sat in his room with my laptop. I have my sleeping bag ready in here to go to sleep close to him… but bringing myself to close my eyes is far from my plans.
Seizures are dangerous.. longer than 30 mins is classed as status and whether convulsing or not is dangerous. SUDEP is a very frightening concept. I don’t know how to deal with the whole thing. I will never get used to them. While they occur, instinct kicks in and you deal with it as you have to, its after when the what ifs and such kick in and the intense sadness at watching my boy go through all this.. the feeling of not being able to control what is happening to the person who means the most to you is immense and despairingly frustrating and upsetting to put it mildly.
A very good friend was on the news today talking about her beautiful family and the challenges they face. Some words she said have stuck in my mind “why waste time today worrying about tomorrow” I love the phrase, I just have to grasp it with both hands.
Sunday, 31 May 2009
I'm guessing some of you are wondering why on the hottest day of the year I have posted a picture of Mikey in his motorbike jacket. Mikey loves motorbikes..admittedly he prefers them moving to not, he spots them a mile off in traffic...oh the giggles and we frequently go to a woods near us so he can see them come and go.. hours we watch so he can smile and enjoy. Well just over a week ago I posted on a motorbike forum to ask if there were any ride outs near here so we could come and watch. I explained a little about Mikey and was over the moon when I got responses, this has escalated over the last week to an invite to their rally, ride outs and now they are arranging a ride out just for Mikey possible with him being part of it (obviously in our car) and raising money for his hospice too. One member has even bought him a basil brush and the forum are getting him one of their fleeces for his birthday, separate from that a member is arranging a ride out from a local group and the messages I have received have resorted me to tears, tears of happiness and to be honest, completely overwhelmed at the care and kindness of complete strangers. I really needed this lift after a tough few weeks, so if they are reading this thank you all at TMBF for everything, as you know I cant put into words how much I want to thank you, my little boy is going to be buzzing. You are truly amazing people with hearts of gold. Lori and Mikey, xx
Saturday, 23 May 2009
Sunday, 10 May 2009
Mikey came home from school on friday with "headteachers award, junior swimmer of the week" came at just the right time to cheer me up and v proud mummy. Not sure how he/school achieve anything in the pool as when I take him swimming he clings onto me like a orangutan with eight legs :) proud happy mummy though. :) Well done Mikey dude. xxxxx
Sunday, 26 April 2009
Here's a couple of pics...excuse the white flash marks... all proudly arranged in a posh frame so photos of photos ;-)
Thursday, 23 April 2009
A very quick update though, Mikey's new feeding regime though hard work (more in the preparation) touch wood is working well. He enjoyed his Easter holidays as did I and I didn't want him to go back to school, mainly for my own selfishness of wanting more fun times with him but also in the back of my mind I knew his return to school meant I had to study study study! Got the appointment through today to see the surgeon in five weeks. Have definitely come round to the idea now and look forward to how it will help Mikey. I refuse to think about the issues around the anesthesia just now, just focusing on a healthy choke free time ahead for my special boy and as always taking one day at a time and concentrating on Mikey's ever present smiles. :-)
Wednesday, 8 April 2009
Aside from the above we have been enjoying the sunny weather (despite a puncture in the wheelchair) Have pics but need to upload them yet, but will hopefully this side of Easter... but don't count your chickens... ha ha. :-)
Monday, 30 March 2009
Sunday, 29 March 2009
2)Allow child to chew on mouse mat?
3)While eggs are boiling assist child to write a letter "M" with a penicl in tray of compost
4)fill "M" with cress seeds
5)Cover seeds with little soil and water well
6)remember eggs that are boiling and remove them to cool
7)cover "m" cress and place in warm sunny position
8)destroy a perfectly good egg box to make egg cup
9)spruce up egg cup with a little foil
10)chop top off one of cooled eggs
11)fail to chop off top and try again (thats why there are three eggs boiled!!! I'll never get a job on blue peter!)
12)scoop out egg carefully from its shell
13)fill egg with compost, cress seed on top and water well
14)place in warm sunny position (and baby bottle tops make great propagators!)
15) later that evening be thankful for the spare home made egg cup as it makes a wonderful bottle top for when you are as pants at me at getting a cork out of your wine bottle!
16)a few days later the "m" cress looks like this:
17) and with a little imagination and patience mr cress head is:
18)and finished with the help of a little play dough now ready for the school egg competition fully decorated in school unifornm:
Thursday, 19 March 2009
My friends at a support group I belong to Special Kids in the UK www.specialkidsintheuk.org I have made many friends there with parents in similar and different situations, no where else could I talk about some things and receive honest open replies and no walking on egg shells.
Mikey's hospice www.standrewshospice.com for the love care and attention Mikey receives from there and the fun he has and also the support I receive from there. Again an overwhelming appreciation for the emotional and practical support to us both.
Family and friends for being normal I guess. I know some things I cannot discuss with all, perhaps due to me being aware of their feelings rather than my own and not wanting the walking on eggshells response. Having said that I met this week with a friend who has known me since I was a child. Due to life I hadn't seen her previous for six years yet I was able to talk to her about everything and everything. She always was and still is a special lady in my heart and i won't be leaving it another six years until I see her again!
And most of all thank you to my beautiful boy just for being him. I am so lucky he is my son. He humbles me daily to smile and smile even when he is poorly. I could write all day about the Mikeyisms that make him so special but I want the world to know how happy I am to be Mikey's mum and definitely the luckiest mum in the world. Obviously I would change things to make his life easier if I could but I cant so acceptance is key on that part which I guess few understand.
I'm guessing you think where has this all come from in the PhD of Mikey's life, it is in fact in thinking about departure from life and preparing for that which obviously I hope will be a long time away but reality forces certain issues and emotions which I am learning to deal with. Discussions this week have been poignant in the process and I wont go into details but those who have been a part of that this week, thank you for your support, openness and friendships and many hugs for all. xx
Tuesday, 17 March 2009
Thursday, 12 March 2009
Perhaps due to tiredness or being a little emotional?? Nah, just me being me! Lol. No point to the post, just a snippet of life in our house last night. :-)
Tuesday, 10 March 2009
The move in schools is so far so good and Mikey is happy little bunny. It helps that his new LSA knows him very well and he adores and responds so well to her so I am very optimistic that this part of his life is a successful move and although the changes in routine is going to confuse him a little, he will come through smiling all the way as he does so well! Yet on the flip side a meeting this morning brings home reality of his health issues. I wish I wasn't so good at burying my head in the sand, then such things may not be such downers. Don't get me wrong the meeting was a success with prospects of new provisions being put in place to help him and me with his changing needs. But to hear sentences out loud like "life limited" and"health needs have been on a plateau but are changing" do get to you. The idea of the meeting is to get the "virtual" team together and discuss ways forward. Always a great idea as when so many people involved who are working to help Mikey, it is important they all work together even if not literally to make him happy and developing within his potential, which is where the virtual word comes from. So I came away happy that we are getting help needed but my head literally hurt with the reality of what is happening to my boy. But as I always say, Mikey keeps smiling so I have to, but sometimes you have to allow yourself to feel the negative emotions or you would pop...I am just aware that I am allowing myself these negative feelings alot more than I used to... perhaps it is part of the process of accepting our lot but its not good. I need to be happy and strong. If I crumble, my boy has noone to be strong for him. I know when he comes home tonight and smiles at me all will be well again, as it has to be and besides which, with a smile like Mikey has for me every day I can no longer feel sad, just pure love for my lil man.
Monday, 2 March 2009
Monday, 9 February 2009
(should the blackbird have a dairy intolerance then its OK as the buttons are dairy free...Lol)
Sunday, 8 February 2009
(and sorry, i have got them all topsy turvy and back to front but am sure you get the gist of the fun had)
Wednesday, 4 February 2009
this I don't understand... still freezing outside with snow on ground but a neighbours washing...
this i understand.. pairs of socks...
this i don't understand.. odd socks that I am sure would have been pairs when they went in the washing machine...
OK, i haven't quite lost the plot but often think about how frustrating it must be for Mikey and how often he is misunderstood... mainly from a communication point of view. For those who don't know Mikey has no verbal means of communication as uses what has become affectionately known as "Mikey adapted makaton" He only uses a few signs and the food ones (such as BSL sign for Y for yogurt) have been the most successful... but i wonder how frustrating it must be for him with this limitation. I in turn find it frustrating when he cannot communicate with me.. especially when he is in pain.. there is no way for him to tell me where it hurts.. i have to go by visible signs and symptoms eg fever... part of my job as mummy is to ease his pain, i get so sad that I cant do that as quick as i may be able to if he were able to tell me earlier on where it hurts. Just a few of my musings of life in my shoes. (and if anyone catches the sock monster tell him I want our socks back! Lol)
Tuesday, 3 February 2009
In light of the above I am sure you now know that Mikey is much improved chest wise. He is still on the anti-b's but loads better in himself and back to being my cheeky little dude. There are other issues floating around, primarily feeding issues and choking but for tonight I am clinging onto my Wii man and special memories made earlier on.
Many thanks to all for messages of get well and support. L. xx
Saturday, 24 January 2009
Keep getting well my lil dude. You are my world. Loads of Love, Mummy. xxxxxxxxx
Thursday, 22 January 2009
my thoughts are with his sicky twin tomorrow.. why our boys? why any of our kids? Hugs for all the special kids out there and especially the two M's at the mo.
Sorry I can't type more today. x
Sunday, 11 January 2009
Mikey has found the buttons on the Sky+ box... Great for encouraging his cause and effect but not great for my sanity... trying to "nip in bud" before a new obsession emerges......
THought I would share as the sequence of pictures is cute even if the reality of it isn't!!
And so christmas begins...
THe christmas celebrations started with going to a party with some very special friends from a support group I belong to specialkidsintheuk Mikey and I made our way to Preston and had a lovely few hours socialising and joining in the christmas fun. Mikey still has not the idea of pass the parcel and much prefers to "throw" the parcel, he wasn't impressed by santa and wouldn't go anywhere near him and at last count managed to make four children cry though not intentionally, where else could I take him where parents are so understanding of Mikey without knowing him properly?
A lovely day, my favourite part is my escape to the kitchen to cook a meal for the people I love. Of course, before that there is the inevitable present opening session. This should be the best part, watching the sheer glee on childrens faces as they see what suprises they have, perhaps the following picture is not the best example of this?
Present opening can be tedious with Mikey, he doesnt cope too well with the obvious differences in the day, his concentration goes and he just wants to escape. His favourite presents... not the Elmo live I was so excited to get for him but:
Squidgy things that are a quid from asda
and a close second was a lovely battery operated fibre optic thingy which the hospice santa gave him:
All in all a lovely day had by all.
Home for a few days..
We came home for a cuople of days mainly to attend a very special young ladies 18th birthday party. WHat a fantastic night we had. Mikey was fluctuating with his oxygen saturations but managed the whole night on the go to arrive home by midnight (was a tired grumpy boy next day though but well worth it!) We danced, Mikey kept trying to escape to the food part... my fear was not him emptying the tables by putting the food into his tummy, more him emptying the tables by grabbing the table cloths LOL But we really really enjoyed ourselves and though not christmas related, this was the best night of the christmas period for me and much needed.
Another little funny (dont show any physios!) was Mikey decided if he propped his foot up on his chair he could eat it (or attempt to!)...hows that for a child with supposed balance and coordination problems? (though guess it is a good example of his hypermobility!)
and so we are then heading back to the north west for new year, a parting present bought by the postie... ammended proposed statement, but wont go into that just now!!!
Mikey didnt stay awake to see the new year in but celebrated new year in his own way a few days later. He appeared in the room looking like this:
Sheepish?? OK, closer inspection.....
mmm...chocolate...where has he found that????
:-) oh it was so nice to see!!! (Just grateful he hadnt choked in his naughtiness as previous few days he had been choking on anything with a thicker consistency than custard... now I get it.. he wanted some jaffa cakes!!!!)
and on that happy little tale I will say bye for now and happy 2009 once again (I am resisting the urge to post of our bumps back to reality along the way and now we are back home, but they will wait!)