No step too small

wow

2011-12-19T12:54:00.000-08:00

Two years since last posting! do I start this again or not?? Answers on a postcard! :o) L. x

blog holiday

2009-12-07T15:44:00.000-08:00

yes I have had what i can describe as a blog holiday. originally because I wanted my next post to be about the wonderful day Mikey had with TMBF when they came from all over the country just to make him smile and smile he did... again, if any are reading, thankyou so much.. that day will live on forever in my heart.
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

Mikey’s dream is only 4 sleeps away!!

2009-06-24T10:55:00.001-07:00

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 the 13th

2009-06-12T02:35:00.001-07:00

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!!

The seizure monster is evil evil evil

2009-06-04T16:17:00.001-07:00

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.

Touched by the kindness of strangers..

2009-05-31T14:05:00.000-07:00

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

lots of photos of mikeys smile...enjoy :-)

2009-05-23T14:56:00.000-07:00

Make a Smilebox slideshow

Something nice..

2009-05-10T09:23:00.000-07:00

alot going on after a rollercoaster of a week which i will post about in due course as i need to (and when I am less fragile!) but something happy and huge to me...
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

The London Marathon

2009-04-26T10:13:00.000-07:00

....was this morning. Every year I watch and in particular since completing it in 2003 I feel a certain warmth and buzz and envy of those on the streets. I have vowed to take part in it again before i am forty..that gives me nine years.. I have four more years of rejections before I am guaranteed a place so I should achieve my aim. Below are pics of my attempt first time round..what a day and what an atmosphere. It is a killer, no doubt but boy is it so so so worth it. I would hope to do better next time, I have lost a lot of the post baby chunk you can see in my pic below (disguised by my Minnie mouse costume :-)) but serious training would be needed first, not a bad thing though as is the only thing that would make me give up smoking again... that or being pregnant and the latter would be a definite no no!!! Last time I raised alot of money for scope but this time I would raise money for more local charities which have had a huge impact on Mikey's life, just a little way of giving something back for the support they provide. That is why I need a ballot place.. but one years rejection and four to go, but maybe this years application will be a lucky one and maybe not...
Here's a couple of pics...excuse the white flash marks... all proudly arranged in a posh frame so photos of photos ;-)

It's not abandoned!

2009-04-23T13:59:00.000-07:00

Am aware that my blog is looking a little vacant, it isn't abandoned, am being a good girl and in between Mikey's care needs am studying every spare second as have my final year exams in a few weeks. I have pictures to add but when I take a break I find myself staring at some useless programme on TV or walking around in circles looking for a corner to hide in. :-)
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. :-)

Decision made..getting used to it

2009-04-08T11:46:00.000-07:00

At an appointment yesterday the decision for Mikey to have a PEG (gastrostomy) was decided. This follows alot of choking incidents and one last week which was extremely scary.. for this reason my head and heart is in it but the idea is taking some getting used to. It has been mentioned several times over the last few months but I have been holding out for hope of a alternative solution. There is none. I am focusing on the positives pointed out by friends who's children have had this done; namely no more sitting on the child to give yucky medicines, no more worrying if had enough fluid intake or food/nutrient intake, dependent on child it all goes down the tube, but the biggie for me is the reassurance of Mikey being able to enjoy bits of food rather than knowing he has to eat but being petrified he is going to choke on anyone of the mouthfuls. Due to so many episodes, it could be his bad winter of chest infections could be mainly due to aspiration. This is all to scary to not go ahead with the procedure. I have to allow it for Mikey's quality of life to be optimum. I am confident that once done it will be one of the best things for him but it's going to be a rocky road getting to that point, but as i always say, Mikey keeps smiling so I have to too. I am so lucky to have friends including the doctors secretary and Mikey's nurse who have all been a fantastic support in the last twenty four hours. I am not focusing on what this means in the big picture of Mikeys health but looking at it as a piece in the jigsaw that will ease some of the problems he is having to deal with.

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. :-)

Clock changes..GRUMP!

2009-03-30T02:30:00.000-07:00

Who makes the rules that clocks have to change?? It's pants. Months of getting Mikey into a routine of sleeping till between four and five have now been gazumped back to the wake up call that feels like between three and four... and bedtime is whole new issue, NOT GOOD! He may be able to survive on little sleep but I need more than a few hours every now and again. He can't help it and he is instantly forgiven with his gorgeous smile once my eyes start working but YUK! Clock changes need to stop.. for the sake of our kids and their parents sanity. Grump over. Thank you.

Eggcellent!! (n cress)

2009-03-29T13:17:00.000-07:00

1)Boil some eggs

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:

Some thankyous...

2009-03-19T03:46:00.000-07:00

A week of mixed feelings and emotions. Need to thank some special people who are my "rocks" In no particular order:

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

New Uniform

2009-03-17T06:14:00.000-07:00

So smart, cute and grown up, but still my baby.

When will i learn???

2009-03-12T05:05:00.000-07:00

...that if you dont turn the oxygen concentrator on it will not turn air into pure oxygen as it is supposed to but will just "alarm" causing the same effect in me.. yup I did it again last night... child asleep, unravel the tubing and mask, turn machine on and "BEEEEEPPPPP!!" This is not the first time so I should know to check... somehow looking at the little light that comes on too isnt going to make it work but that is what I do.. I am just about to go get the emergancy cylinder and then I realise... SWITCH IT ON AT THE PLUG!!!
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. :-)

I have a headache!

2009-03-10T07:19:00.000-07:00

...literally but hey ho! I don't get how it is easy to be all happy and sad and back and forth through these emotions in short spaces of time, surely one must outweigh the other. Not sure my waffle is making sense.
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.

Battles....

2009-03-02T03:58:00.000-08:00

... there are so many parents of special kids have to fight to get their children what they need... hence the word NEED and not want (and the latter is usually the case too!) I'm not even talking super dooper sensory equipment that costs an arm and a leg, am talking everyday rights to services and equipment which help our children. OF all the battles, a recent one has been very important for Mikey's well being. I won this battle (much to my and many others) surprise, don't get me wrong, I would have kept battling for this particular provision but it hasn't turned out to be as long winded (or expensive) as was perceived.. though nine months is still a long time of the stress and saying the right things to the right people in the right order meant it was a tough one all the same. When i recently learnt of the victory I was jumping around the room. Now the results of this battle will come into place a week today. It means big changes for my boy (and me) I know the right decisions have been made but apprehension comes with change. Not only the motherly worry but the practical and emotional effects on Mikey in this huge change in environment and routine. He is perhaps more resilient to it all than I am going to be and i hope will cope well with it all. Needed to blog my emotions as kind of a roller coaster for me and perhaps fortunately my lil man is clueless to the impending changes. Should I be able to explain to him I would but I cant find a way to make him understand. I ask for vibes that the changes do not shock him too much and that he settles into a new routine with ease. Just wish I could tell him what is going on to ease any confusion he may have and hope above hopes the positives outweigh the negatives.... which I am sure they will. But it's my job to worry so allow me to indulge.

Caught in the act!

2009-02-09T01:45:00.000-08:00

I knew the blackbirds were responsible for eating the wheat crunchies and chocolate buttons from Mikey's snowman and was in the right place at the right time with camera to hand to see the last wheat crunchie being snaffled:

(should the blackbird have a dairy intolerance then its OK as the buttons are dairy free...Lol)

SNOW!!

2009-02-08T10:50:00.000-08:00

OK, could not let a blog pass without our snowy pics. Mikey wrapped up to the nines (amazing how many layers can fit under a coat when need arises... the one time i don't complain about clothes not being made for skinny kids) The pics say it all really but Mikey loved being out in the snow... he even was eventually brave and touched it! He loved snowballs being thrown in the air and splattered on the ground or wall.. we stayed out long enough to build a snowman with wheat crunchies and chocolate buttons for nose/eyes etc and to throw a few snowballs about but i feared for his chest so brought him back in (much to his dismay at first) when his little nose started to go a bit rudolphy... once over his paddy he was happy to flake out all snugly on the sofa...and so for the pics:

(and sorry, i have got them all topsy turvy and back to front but am sure you get the gist of the fun had)

Misunderstandings

2009-02-04T07:13:00.000-08:00

this I understand.. a child wanting to be out in the snow...

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)

My lil "Wii" man

2009-02-03T10:49:00.000-08:00

... before i update on the health side of things I have to share my sheer joy today... I set up our new Wii last night and today went out to buy the mario carts with steering wheel... this evening I sat Mikey on my knee and he loved Mario karts! I believe (and please don't burst my bubble on this) he understood the idea of him (well us... very much my hands directing and over his hands) steering was moving the little kart on the TV screen and the screeches of delight when he crashed it or if it went over a zoomy ramp type thing to go really fast. He sat on my knee and played for about twenty minutes... that is a huge miracle as Mikey does not sit still for any length of time. Unfortunately I couldnt take any photos as only us here but needed to share this little piece of enjoyment!

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

Behind the mask

2009-01-24T11:28:00.001-08:00

.... is a little boy fighting a horrible infection. I had hoped for happier news to tell you but this infection has hit him hard. There are signs of improvement and the glimmer of smiles today. The reason for the photo is you may see the mask is HUGE! Mikey is needing a high level of oxygen input to keep his oxygen levels above 90% and he has fought his usual canulae and paediatric masks so while on a hunt for a solution I found the said mask. RESULT! More toleration and a better oxygenated Mikey and happier mummy! After a better night during the night last night I had hoped he had turned the corner this morning. When I awoke it was all quiet and I got the familiar panic feeling as I went in his room not knowing what I may find. I know I am not alone in this feeling and used to worry I was morbid in my thinkings but a recent discussion revealed I am not alone in this fear, some may understand and some may not. I won't dwell on it. Mikey decided to scare me some more by coughing up some blood... that was a new experience for us both but in different ways. So's not to go into details all i can say is though Mikey is still very poorly, he is fighting it and tomorrow will bring a new day with hopefully more improvements in his health. Thankyou to the lovely messages we have recieved and thankyou for allowing me to blog this, I think I needed to get it off my chest (for want of a better phrase!)...always easier to write (or type) than talk.

Keep getting well my lil dude. You are my world. Loads of Love, Mummy. xxxxxxxxx

life is NOT fair

2009-01-22T14:40:00.000-08:00

my little man is unwell again. Chest infection perhaps caused by aspiration as many choking episodes. All scary. It stinks! I need a magic wand to make him better. I cannot post much for fear of making my readers as unhappy as i feel but will update at the weekend with hopefully some happier news.
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

He's found the buttons!!!

2009-01-11T06:26:00.000-08:00

I returned to the living room after changing Mikeys bedding to find a quiet contented little dude and here's why.......

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!!

Catchup and highlights...

2009-01-11T05:19:00.000-08:00

Ok, here goes, I will attempt to include snippets from the holiday period while attempting to post pictures along the way instead of just at the top.

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?

Christmas day

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!!!

New Year
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????
the evidence:

:-) 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!)

Happy New Year!!

2009-01-02T05:27:00.000-08:00

A small gap in my blogging adventure, mainly due to my newly aquired dongle not being too cooperative so while away for the christmas period I am limited in cyberspace, however will be back to normal next week, but wanted to battle my dongle to wish everyone a happy new year...

Nativity

2008-12-18T00:40:00.000-08:00

Today is Mikeys nativity. Probably his last one at the school he is at now. Very excited for him. THe best part of it is when he is up at the front with his friends and teachers and you see the moment when he spots myself or someone he knows watching and gets very excited (and then spends the rest of the performance pulling tongues across the hall :-)) He is very good at that... i once took him to university with me initially to see the tutor before the lecture started but we were allowed to stay and boy did he have fun being centre of attention, not sure we all concentrated that well on what we were supposed to be doing but university at six years old...tell that to his doctors who said he wouldnt do this that and the other :-)

Mummys can't be poorly!

2008-12-16T00:34:00.001-08:00

The title says it all really. I am struggling with a virusy cold and have had this for nearly a week. Feel guilty for moaning about feeling yuk and it humbles me to think that Mikey must feel yuk alot of the time yet he keeps smiling best he can.. so why don't I? I go to sleep each night thinking tomorrow I should feel better but morning comes and the aches and constant headache is still there. Weekend was a real struggle. Too proud to ask for help from anyone, and would there be any point? I wrote on my face book status about being yukky. People who could have helped sent me get well wishes, nothing more, probably too scared to offer to help with Mikey incase I actually took them up on it and would have ruined their weekend plans. On the phone to my brother yesterday I told him I was poorly. He gave me sympathy but it wasn't until i said I had been fainting he said he would have come over after work... so to be poorly you have to pass out because then you are really poorly. Lol. I tell a little white lie there as another mum of a child offered to have Mikey on the second day yet she has a child of her own with high care needs, but she does understand the struggle of being ill and being a carer. Yep, this is a self pitying post, but as i said when i started out, i will be honest in my posts with my feelings at the time of posting. Hey ho.. off in search of lemsip now....

A brief history...

2008-12-15T09:05:00.000-08:00

And so to a second post. I feel i should provide a brief history, and brief it will be. To write it all would mean you were still sat here reading at new year 2020 The picture you hopefully see above this was Mikey at three days old and a more recent one... this display in its own right shows just how far my boy has come.
At 33 weeks I went into labour but they stopped it. Had high blood pressure and was keeping a kick chart...three weeks later I noted there was little movement. I was admitted and baby was monitored. He had low ctgs and v poor foetal movement...24 hours later I finally was examined (another story!) and was rushed upstairs to be induced. waters popped (my eyes nearly did too when I saw the knitting needle implement they were going to pop my waters with!) But labour didn't happen. Another examination concluded baby was in distress and had emergency c section. Mikey was born at 7:15pm on 20th July 2000. It’s strange the things you remember...I remember thinking it’s the break in emmerdale. He was rushed to the resus..only needed facial oxygen to get him going for five minutes and I heard him...not a cry, just a noise but it was all a relief. As the surgeons patched me up...I remember an intense urge and need to see him and hold him. He was placed near me so I could see him and his father got to hold him. We were then taken to the recovery bit. I sooo wanted to hold him but he was taken to SCBU...then told it was because he was a bit cold..nothing serious. His dad went to see him and bought me back Polaroid pic of Mikey. I went to sleep clutching that picture. Next thing I remembered was I was woken by two doctors to tell me they thought Mikey may have an infection but nothing serious so to get some sleep. Next morning I waited and waited to be taken to see my baby...I finally was taken up there at half ten. He looked huge in the incubator even though he was 5lb10 born...he was so long!! He looked grey but otherwise OK. Being young and naive I didn’t suspect his condition deteriorating. Day consisted of visitors. I remember feeling resentful at all these people seeing my baby when I couldn't cuddle him. That evening he really got worse...multi organ failure, had to be put on the ventilator and paralysed and morphine, platelet transfusions...too much to go into ...good job this is blogging..have tears remembering. At two in the morning it was arranged for him to be christened..I’m not religious or anything but it seemed a comfort at the time. I was asked if I wanted to hold him....to let him go in my arms...my desire to hold him went from 100% to zero and told them to fight for my little bundle. so that they did...next few days were critical and after five days he was taken off the ventilator and was breathing for himself...that felt like he had just been born all over again!!! A month later I took him home. He had his trials at SCBU but the important thing was I could take him home!!!
At first I found myself in denial of what had happened...it was like he had only been born a few days before...I became very protective of him. The first time I took him out was to a charity do...my oldest brother was doing a fire walk to raise money for the SCBU and when I arrived, my sister in law came and took Mikey off me to take him to show her family before I had chance to say anything! I remember being very upset and mortified...he was my baby to show off and even more so after what he had been through... but she wasn’t to know or even understand how and why I felt like I did.
I was told to expect some long term problems but not to the extent which I think they knew. I got it into my head that it would be just his liver as it was still degenerating. I thought he may need extra help from physio etc but it didn’t really dawn on me the shocks that were to follow. When he was six months old I was told he was showing early signs of cerebral palsy. By then we had portage, physio, OT, sensory impairment services etc etc coming in...my house didn’t feel like my own and to some extent my baby didn’t feel like my own...being told what to be doing with him...I just wanted them to let him be a baby...many a time I felt like screaming...ey up..my child is a baby, he is Mikey..leave us alone. But I know they were doing the best they could for him. Days filled up with these "professionals" and hospital visits to Lincoln Boston Sheffield and Nottingham. Looking back, I don’t know how I kept up with it!
The first official diagnosis we got was when he was fourteen months old. He had been for MRI at Sheffield and I knew we were going for the results from the neurologists... He said that Mikey has dystonic tetraplegic athetiod cp with some spasticity. Say it quick and it was still as scary. I just felt numb and very alone and cheated for myself and my little boy. It took weeks to learn to accept it, grieve, accept, loads of tears, feelings of guilt for feeling as I did and an intense sadness. Even now I get that sadness for Mikey. At first I would see other babies..feel jealous and couldn’t help comparing what they could do until I learnt the following poem
A child is like a butterfly
Some can fly higher than others
Each one is special
I still get sad when I see other eight year olds. Mikey has a cousin the same age and seeing them together I still feel sad at times.
Since then, it has been a absolute rollercoaster. In house therapy continued, though I sometimes felt overcrowded with them I knew they were doing the best for my little boy and I will be eternally grateful to his portage worker who really helped me to help him to turn corners and became and still is a great friend to Mikey and me. It is the small milestones that matter…not only because of their value in their own right but the effort gone through by all and especially Mikey to reach them. I remember sitting on the floor with his OT when he was a baby…she had a piece of foam and an electric carving knife trying to make a suitable hole in the foam to allow Mikey to learn to keep his head midline as it always went to one side… thus followed by months of making the poor child lay with his head on this pillow hence he learnt to keep his head midline which is a big milestone. Mikey was determined from day one. Problems arose and were dealt with as they did. At one point I was feeding him 15 times a day to have it thrown up all over the wall. Trial and error with meds meant his reflux was put into control and he narrowly escaped a PEG and eventually had his NG tube removed as I was able to feed him his liquid supplements through a bottle.
He has been given many “labels” One being Sotos syndrome which they found after genetic counselling. He has scoliosis for which he had a nine hour corrective surgery in October 2006. That has been a major improvement for his mobility but unfortunately his lungs haven't recovered and he is on oxygen therapy. His kidneys are a cause for concern too...one just isn't working but the other one is compensating yet showing signs of deterioration There are questions about Alexanders disease, a degenerative condition but I am sceptical. It is there in the back of my mind mainly because of the sensitive subject of life expectancy..but it is a grey area and I refuse to believe and dwell on the subject. He is living and that is what I have to concentrate on. More recently he has developed epilepsy and his lung function has not been great. Mikey has had many chances to "opt" out but he fights to stay here and keeps smiling, if he ends up crying it is not because of his effort to be happy.
He can now sit without using his hands to support himself and can even walk while holding hands for a short distance. He cannot talk..if there is one thing I would wish for him…it would be communication…just so he can tell me if he feels ill or wants something or simply to say my name. I am constantly saying “mama” to him in the hope he will copy…even an “m” would be everything but to no avail.
He attends a local school for children with physical and medical needs. He loves it! There is not a lot in life he doesn’t love…baths can be a battle though. Lol
His dad and I have been divorced for five years through his dads anger management problems (another not to be told here story) and it does make me sad that he misses out on having a dad as his dad doesn’t see him but life is what it is and I can be a mum and dad rolled into one. However I am with a wonderful man who unfortunately at the moment lives 150 miles away but who knows what the future may hold?
And exactly that…I don’t know what the future holds for Mikey…all I know is we face every day as it comes and appreciate each day as it has its own blessings…. The main one being Mikey's ever constant smiles and giggles.

(OK, so it wasnt that brief, Sorry and Happy new year 2020 :))

Tentative hello

2008-12-15T06:15:00.000-08:00

...mmm blog world.. have been tempted many times to embark on this journey while following several of my friends blogs. I believe it to be theraputic, addictive amongst other things?
For me, if I manage to keep it going as regular as you hope, it is a chance to share a peek into the world of myself and my now eight year old son who has several disabilities and complex health needs. A chance for me to say what is really happening and should my readers gain any strength from that then all good.
I hope to be honest in my thoughts and feelings that I share so to give a true insight into what it is really like to be a mum of a child with his needs, to show that I am not a saint or someone to be admired. I am just a mum who loves her boy so much as any mum and have to deal with whatever is thrown at us. Not a saint or a coper... just a mum...