The London Marathon

....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!

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

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!

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)

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...

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

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