Hmmm

So when it's thundering and lightening outside and it's raining hard, what do you do??

You go swimming!!!!

Happy Birthday J

Happy Birthday J.

I can't believe my baby is 7 already, where does the time go???

Hope you have a wonderful day sweetheart!

So

Did I tell you about the new ornament we have in our garden??? It is this year's must have, well it is if you have builders!

Well someone decided they didn't like my new ornament in the upright position and decided to push it over!!

What's my ornament??? One of these!! Meet Looie!!!

It is now laid on it's side in the front garden, and who was responsible for this, about half a dozen kids, and if it takes that many to push it over I've got no chance of being able to lift it back into the upright position!!

Report from the Neuro

I did post a little while ago about how I couldn't find the telephone number for the Neuro, because in amongst all my packing I'd managed to forget where I'd packed all the info on Michael. Anyway I did ring, and I did ask what had happened to the report, and was promised it would arrive as soon as possible, well it arrived, at the beginning of June, and I've been meaning to post something about it, but in amongst all the confusion that is life at the moment it just hasn't happened:

Results were as follows:

MR Brain Imaging:

There was some reduction in peritrigonal white matter bulk.

Bulbar EMG:

There was definite evidence on EMG that there has been reinnervation, and that therefore there is a bulbar palsy. The absence of the later components of the blink reflex is also evidence of a disturbance of the brain stem.

Discussion with Parents

Current investigations, particularly the bulbar EMG confirm there is an underlying neurological basis for Michael's feeding difficulties. He has evidence of a bulbar palsy on the electrical studies and this has affected his pharengyl stage of swallowing, leading to compromised swallow safety and risk of aspiration.

Although there may be some changes to his swallow function over time, generally when there is neurological disturbance of the messages from the brain stem to the muscles and the nerves controlling chewing and swallowing, we recognise that this is permanent, and therefore Michael will always have some degree of oromotor difficulty for feeding.

In terms of the scan findings, these are subtle changes and are often the pattern of change we see with prematurity. Sometimes we associate loss of white matter bulk or nerve tracts with motor or physical difficulties.

Cath

Just for you - pics of demolished house!!

Back home now!!

So we got home on Thursday, Michael couldn't wait to get home, he'd had lots of fun, but I think he was getting to the stage where enough was enough, and wanted to come home!

To be honest so had I, it's nice to go back home and be with my parents and in the area that I grew up, but nothing beats coming home, and being in your own house with your things around you.

Thing is half the walls were missing when I got home!! I started to think maybe I should have stayed where I was!!

So it is

10.30pm my daughter went to bed almost 3 hours ago, and she is still playing up and creating!! Up bright and early tomorrow for school!!

We've been away.......

So really..........we are still away! We moved out for a few days and left DH at home with the builders for company!

I think I mentioned that they were going to put in a metal beam across the ceiling in my bedroom, the thoughts of all the dust etc. and the damage that it could reak on what are already very delicate lungs, it seemed the most sensible thing to remove the kids from out of the house. (Didn't go down too well with certain schools, who object to their pupils taking holidays in term time, that and they didn't get 3 weeks required notice!! But that's a whole other post!!!)

Ok....as I said seemed like a good idea at the time, from Michael's lungs point of view probably the best idea....from my sanity's point of view - BAD MOVE!!

We arrived Saturday, and we've had a great time, although I must admit the weather hasn't been the best, Sunday we did Brocklesby Steam Rally, and Monday we went to The Deep. (I promise to post some photo's when I get home!)
Yesterday and today due to bad weather, we stayed home, baked and built models with maize. So it's been a good few days, but they have been long days, and stressful nights.

Night-time has been a nightmare! 10pm tonight, Michael was still wide awake, his sister having only just gone to bed, & this is a quiet night.

Last night it was 11pm before they all went to sleep, the night before just short of midnight, and Michael awake at 4am being sick!

Can I say I'm really looking forward to getting home tomorrow and getting them back into their own beds!! I am really hoping that they will go back to early bed-times and going to sleep at night. I may have a battle on my hands!!

Any ideas????

BTW: if your interested, it looks like Hubby had a good time over the weekend.........click here
I'm seriously contemplating joining the forum he belongs to, as "guzziwidow" - just to keep up with what's going on in my husbands life. Yes I'm pee'd off, and yes I would seriously like to remove the wheels from his machine and lose them. Does it show!!

What a Star

My son is such a sweetheart, what more can I say, he really made me smile today

Michael helped by clearing the table after tea today, and washing up. Some day he is going to make someone a lovely husband!!

Now we just need to work on scraping plates before you put them in the washing up bowl.

Daddy is

having a wonderful time in Ireland, although getting on the Ferry turned out to be a bit of an adventure! He dropped his bike apparently there's no damage done to the bike, except for the indicator, which fell off as the handle bar (is that what they call them on a motor-bike??) hit the floor.

The rest of the bike apparently was cushioned by DH's right leg!! So apparently he's feeling a bit bruised today, and very embarrassed!!

Today is

Thursday, DH left at 5am to go to Ireland for the weekend....

Can I just say if we make it to Monday in one piece it will be nothing short of a miracle.

You just do not want to know how stressed and tired I am right now, but I'm going to tell you anyway - ;-)

We did an overnight reading last night to check on Michael's saturation levels, given how chesty he's been, I wanted to know before I take him away, what's going on with the chest, do we need to be looking at putting him back into Oxygen at night or is he doing ok, if he needs oxygen then I need to get a script for the cylinders or try to find somewhere in the car for the concentrator!! Anyway his sat's overnight were 92% average, not brilliant but not bad. Acceptable to his Consultant so we got a stay on the Oxygen!!

It is Thursday today, and every other Thursday is a swimming day at school, Michael is having difficulty comprehending that he doesn't go every week, only every other week. This morning I had to wake him, he didn't really want to move, but when he did the first thing he said was "Swimming today" when Mummy said "not today" it wasn't long before Mummy realised that was a bad move!!

We had tears, tantrums and a repeated insistance that it's "swimming today" He was still tearful when he got in the taxi to go to school.

I have to say I got a lovely hug when he came home from school, but with all the building work going on around here, we have no accessible garden, and because of the lack of a sense of danger, Michael would not think twice about getting into places he shouldn't, so as soon as I locked the door behind him, it started!!

I was so glad when bedtime arrived!!!

Extension

The building work is almost finished, one more day of brick laying and it should be ready for a roof!! Woo Hoo!!!

Unfortunatly before the roof goes on the builder need to remove brick work from the existing wall in order to put in a steel beam to support the roof that's already there! Which will involve supporting my bedroom ceiling, to stop it falling down, and turning my bedroom into a building site.

So we've had to empty our bedroom completely - Can I just admit to having hoovered the carpets, because I don't want the builder to think I'm a scruff! Thing is he's going to cover them in bricks, dust and whatever else falls out the walls!! So why am I worried about the dust that's collected behind the cupboards???

Here it is in all it's glory!!

Michael and the Owl

Remember my post about our trip to the lakes and the owls and Michael's fascination for owls, I found this photo when searching through all my pictures and thought I would share!

Half term week

It has been a busy week this week with one thing and another. Monday my daughter fell from the slide in the garden and fractured her collar bone, so she now has her arm in a sling and an appointment for the fracture clinic next Wednesday.

Tuesday we went away on holiday, we went to the Lake District for a few days, we love it up in the lakes, but F breaking her coller bone meant we were limited to what we could and couldn't do. Normally we'd go to Grizedale Forest, which has some lovely walks that the children can manage, amazing views, without being too steep. Small legs don't do steep!!

Because of the fall and the fracture I have to admit I was concerned about how she would manage even the most gentle of walks, only having one arm!! So Wednesday we got in the car and drove to Windemere, found the Lakeland Limited Store, and after 15 minuites in there decided that shopping in Windemere was a bad idea!!

Next stop the Aquarium on the Lakes, which was another disaster, it was heaving it down with rain at this point and lots of people had obviously had the same idea, we had no change for the car-park so DH went into the Aquarium to get some, they wouldn't change his money, said we had to go to the steamers to get change. So the Aquarium lost out on a family of 6. Why do places have these stupid rules that only harm their own business???

Back into the car, and heading off to who knows where!! We came across a sign post for a wild animal park which we followed, down into a little village with a stop for lunch and then off to the South Lakes Wild Animal Park It wasn't raining, it was wet, but not raining and it was a lovely afternoon.

Michael and Friend

Thursday, we were less organised in the morning due to a difficult night with F and bad arm, so we didn't get away as early as planned, but did have more of an idea as to where we were going. We'd decided to go to Muncaster Castle via the Wrynose and Hardknott Pass can I just say I can imagine the views around the Pass are amazing, but when the place is shrouded in cloud it is scary!! We never made it all the way over the Pass, someone had broken down at the top of Hardknott and so it was blocked....but Wrynose was amazing, even in the clouds, we could just about make out waterfalls and streams running along side the car! It is not for the faint-hearted though!!

Taken from the start of Wrynose

Muncaster Castle was lovely, and a great day out, although I wouldn't recommend actually looking around the Castle with very small, hyper-active autistic children!! Especially when it's busy!!

The Owl Centre and the flying display were lovely, they have some beautiful birds there, I have to say Michael was somewhat distraught to find he couldn't actually stroke the owls!!! Michael loves owls, a few years ago we took him to a farm where they had a barn owl that you could actually stroke, and everytime we turned round Michael was heading back to the barn owl!!

Muncaster Castle

5am

Up again at 5am today - aren't I lucky???

Michael has now finished being sick and is sleeping on the sofa!! Looks like another cold on the way