Day 6

Today the concrete foundations should be going in!

We managed to miss all the action! Stew was at work and i was at a hospital appointment with Bethany.

 The skip has been removed and apparently there was a huge concrete mixer on drive to pour tons of concrete in.

Here is what we found on return to the house:

Bethany's can dos - can't dos

Can

1. Can sing 
2. Can laugh
3. Can cry
4. Can give amazing hugs
5. Can track objects
6. Do amazing smiles
7. Can giggle very loudly n randomly at times!!
8. Can chat away with lots of noises
9. Shout at the TV if on wrong channel or too quite lol (how dare mummy watch something other than cbeebies on their TV)
10. Just be beautiful

Can't

1. Can't win X-factor (we cud start a campaign Bethany to win x-factor lol)
2. Can't get daddy's sence of hourmor (neither can mummy some times!)
3. Can't watch a soppy film and cry at it (like mummy and DADDY!)
4. doesn't say no to giving them amazing hugs
5. Can't fix on faces yet
6. Can't walk
7. Can't sit
8. Can't talk like a normal person
9. Can't work the TV remote
10. Argue or fight with her sister (though she probably wishes she could when her sister sits on her or climbs on her or pulls her hair)

any one got anything else about B that she can - can't do??

Day 4 + 5

Day 4

Pouring with rain today so not a lot the builders could do apart from make a mess of the inside!

Day 5

The sun came out today the builders got on with digging the deep foundations by the side of the drainage system and the building inspector came out to check the foundations! hopefully concrete will be going in the holes for the foundation on Monday!

Concrete mixer ready for monday

Hole beside drainage system really deep!

Day 4

No work done yesterday as it were P..... well really really raining!

Day 3

Woke up with Bethany grumbling! Think she may have had a fit this morning. She went back to sleep which is very unlike her! She not a well girl poor thing. Doctor coming round in a bit to see how she is. Hoping its nothing too serious as we are currently on half-term holidays!

 Drilling started at 8am this morning!  The builders have been hard at work all day, they have filled there first skip and already got another one on the drive to fill. The foundation holes have got deeper and they have found the drains for the new wet room.

Day 2

The rubble has been removed and the skip has been filled!

We now have a big hole/trench!  Not too much drilling today. We can just about get Bethany's wheelchair past the skip to get to the back door. Stew is going to have to hack a plant down at the front so we can use the gravel!

Slowly getting used to having the builders around.

Wonder what day 3 will bring?

Day 1

We survived the first day! lots of drilling all day and this is the end result ! Little one managed to have naps with all the noise ! my car is looking more grey than black now ! Can't believe it has finally started!

The old extension

Work is starting today on getting the old extension extended!

We are saying good bye to the lovely mural but hopefully we are going to replace it once it is finished with something equally wonderful!

Any ideas what we could put in to replace it?


This is the old bedroom as you can see JUST wide enough for a double bed (note mattress dumped on the floor!)  B's bed is as wide as a this mattress if not wider and will need access to both sides as she gets older for her care and fit control ect ect.

so the mural wall is moving a couple of feet
<------ that way!

this space will become a store room/corridor the bathroom now will become the new bedroom (the biggest in the house!) and the bathroom will be moved and turned into a wet room.

this is the outside the closest wall is coming ---> to were the flowers are and a bit more. Will show the mess the builders make tomorrow.

Bethany now

Bethany left nursery from poplars in Aug 2011 to start Oak Fields Special needs school in sept full time.

Her nursery were (and still are for her sister) amasing any problems and trouble Bethany threw at them they took in there stride and i know B can sometimes be a handful.

She has been at school for half a term now and seems to be settling in well and comes home in a chatty smiley mood.

B's history part 3

We had to wait quite a while for B's next fit to happen and boy was this one big it lasted for over 45 mins before she stopped she had another one while in hospital which as luck would have it happened at the time of the doctor round so help was close at hand!
The doctors desided that this was not a one off and B would need to be put on anti-epileptic drugs to help her not have fits.
It was around this time January 2010 that we found out the joyoues new that B would soon be having a (unknown to us) little sister, the doctors suddenly thought that we probably should check to see if B's problems were genetics and blood tests were rushed through in record time but they found some thing.
Bethany, bless her, had been found to have a rare chromosome disorder called a 1q4 deletion with 1q43 and 1q44 being the missing bits. Mum and Dad were both then checked to see if there were carriers. Luckily we weren't so the now baking Eden shouldn't have anything to worry about (apart from having me as a dad!)

through out 2010 B had almost 1 fit every month from march until October when her anti fit meds were looked at and SHOCK HORROR B had put on too much weight so her meds had to be upped! who would have thought it?

First Xmas

Since then she has only had one big fit in march 2011 were we were in hospital for other reasons and were discharged we got 10 mins away from hospital and she started fitting in the back of the car, she then aspirated and gave her self pneumonia and we nearly lost her due to this as she wouldn't stop fitting during this recovery period so had to have a second anti fit drug to help her recover from the pneumonia. We were in hospital for nearly two more weeks while B fought back and recovered. This fit drove home how it probably will be something ordinary that finally takes our beloved rather than her 1q4 deletion.

And with only one fit since then finguers X'd we have them fits under control.

B History part 2

B at only 5 weeks old was then admited back to hospital and was due to have a 3rd Ventriculostomy (basicaly an operation to try get her ventricals working) she also had an omar reservoir inserted too.

Mummy trying to smile!

We then spent ANOTHER two weeks in hospital due to B getting ill. The doctors sent us home with us not happy with the situation, as B was not her self. BUT we were back in hospital within two weeks as her head started leaking Cerebrospinal fluid (csf your brain liquid!) from the site of the omar reservoir and as another little side thing B started to have Apneas (basically little sleeps where she stopped breathing!) not at all worrying.


We then were sent home again for two weeks. But B's head was STILL growing at an alarming rate and our paediatrician wasn't happy with this so sent us back into hospital, on our wedding anniversary no less.


She had a shunt inserted which drained cs fluid from the arachnoid space around her head down to her tummy, this fixed her head growing fast problem, to date it has grown 5 millimetres since this op. She recovered well from this op and we were home nice and fast.


Feeding continued to be a problem she seemed to have a problem with the sucking and swallowing from a bottle, also drinking large amount from a cup or beaker was a problem due to her lack of speed, she also wouldn't cry or let us know if she was hungry, worryingly. Although she STILL doesn't!

Smiles even with everything going on

At home at last!

By december of 2008 our peadiatrician wanted us to feed her by nasogastric tube NG to try and get her to put some weight on ( this is a tube put in to the tummy through her nose see main picture of her) this was meant to be a short term mesure and we were meant to keep trying to feed with bottles and beakers and cups and flying saucers and everything else.
By May 2009 B's feeding had not taken off and her wieght was still very low for her age it was decided that she would need a Gastrostomy (tube straight in to her tummy from the outside of her tummy)


This helped with feeding and still does, when mummy and daddy remember to plug B in! Things were going well the feeding took off, the head was a stable size and there were no other problems untill september 2009 when B had her first tonic clonic seziure and we spent 2 days in hosp recovering from it. Luckly our peaditrician didn't want to do any thing in reaction to this fit and said we had to wait untill her next one before we introduced and medication to control it as she said it could of been one of them things.

B's history

didn't put who we were did I!


We are a family, one mum (char) one dad(stew) and two little girls(Bethany 3& Eden just turned 1)


Eden is a healthy fine normal (as you get these days) little girl, now Bethany is a bit different.
Char had a bleed early on so we had an 8 weeks scan, everything seemed OK then.


We had another scan at 20 weeks which found that little B's ventricular were enlarged (there the bits in your brain that drains the fluid to other bits!)
We had a whole series of ultra scans and MRI scans and ended with a diagnoses of 

Hydrocephalus

Water on the brain

The pregnancy went to term and then another two weeks on top, she didn't want to come out  bless her! Charlotte was induced and even then B held on in there for another 24-26 hours untill she actually got  ventouse out (just before an emergency C-section) there was around 9 staff helping to get her out!

The day After!

The Day before!

Just like everything to do with B her birth was not straight forward! her placenta got stuck and Char had to go have an epidural and have it ripped out! This meant looking after B was going to be hard for the first night, but she wouldn't latch on to the breast.

We were in hospital for another 2 weeks trying to get her to feed, we tried different milks, teats, bottles and cups and nothing was working.

The Main doctor looking after us wanted B to go home and get some bugs as she had been in a strial environment since birth. Her head was growing at an alarming rate. We spent another 2 weeks at home trying to come to terms with this little girl. her head was still growing FAST

Nursery children raise cash for care of friend Bethany

Bethany's old nursery raised and donated money for the local Children's development centre that she attends for medical care and respite :)

http://www.thisisnottingham.co.uk/Nursery-children-raise-cash-care-friend-Bethany/story-13333705-detail/story.html

construction work has been set to start

We have had our plans for an extension ok'd and it going ahead.

Hopefully going to start next week (half term tho, boo)

Busy emptying out the detritus that has built up in there and trying to get it as empty as so we can knock down the wall

I will be putting who we are and our history over the next few days