I did it!!!

I'm so sorry for the lack of recent updates but I promise to update you all with Aydan's progress ASAP! As you can imagine it has been complete chaos in our household, with one thing or another, but Aydan is still plodding along and is making progress no matter how small his steps are! :0)

This update is about me, Aydan's mummy! (Sorry Aydan fans!)

Well despite having recently been diagnosed with ME and already having paraesthesia (pins and needles in my whole body) I beat the odds, and although it took me much longer than the others in my group, my whole group were so supportive and really helped me achieve my goal!

I WALKED THE WALL OF CHINA!!!! 

To say the challenge was hard would be an understatement! All I can say is imagine walking up and down your stairs for 8 hours continuously, and then you might be close to how I felt, now try adding another 4 days to that...

On one of the days we actually did do 8 hours, and one of the girls logged it in as 17.7km, so that was 17.7km of uneven stairs!!!  (That's just one day of 5....)

Some parts of the wall were virtually non existant and had turned into a pile of rubble, some times we had to avoid the wall and walk along side it and 'mountain climb' our way across! Other parts of the wall were near verticle climbs, with no sides, nothing to hold on to, and an 800 metre drop either side of us! 

Not only was the experience physically exhausting but it was also mentally exhausting! 

At times I experienced fear and was frightened for my life.... 

I have felt fatigue like no other, and have had to slow down and let others go miles ahead of me... But like a slow moving zombie, no matter how fast you run I am still following you behind... Slowly... My determination to succeed was strong and I was not letting it beat me!

 I've felt pain like I've never experienced before and leg cramps that have lasted for hours and not just mere minutes! I have cried out, just like in labour, that I couldn't go on anymore and wanted the pain to stop!!!

I have experienced joy of finally climbing those awful steep bits and hearing my team cheering my name and holding their walking sticks up like a tunnel of honour for me to walk through! (After taking an hour to catch them up!!)

 I have been overwhelmed by the beauty of the view as I paused to try and take it all in, because believe me, the photos I have taken will never do it justice... 

I have survived Big Trevs driving and him showing us all how he's 'king of the road!' (but that's another story!!)

And, lastly, I have felt pride as my name was called, and I was told 'YOU DID IT!' And was handed a medal!

I would like to say a HUGE thank you to everybody who has supported and/or sponsored me to do this challenge, it has really meant a lot to us as a family! 

If you would like to donate to such a good cause please follow this link! 

https://www.justgiving.com/JessicasWallOfChinaWalk/

13th January 2014

Well today I have done something possibly very crazy, but it is something amazing at the same time!!!

I have signed up to walk the Great Wall of China for Alder Hey!!! 😮😮😮

It will mean leaving my family for 9 days, and the walk is for 5 days, but I am really very excited!! 

I don't really expect people to understand why I'm doing this! Leaving my family for a day is hard enough, but leaving them for 9 days will be very tough! Much more tougher than walking the wall of China and tougher than walking the 2000 steps up the heavenly ladder!! 

I imagine there is some concern over daddy having to run the household for 9 days too, but I honestly think he will be fine! I will fill the freezer up with ready meals and the kids will be at school for most of the time so he will only really have Aydan! 

If Aydan isn't very well then of course I won't do it! My family do come before a walk any day!

But you know when something just calls out to you and you think that you really have to do it?!

There I was stood in the Alder hey corridor eating a pasty and looking at the poster like I had won the lottery! I mean let's face it! How often do opportunities like this come up?!

The aim is to raise a minimum of £3000 for them! I'm pretty certain I can do it! I've raised nearly £1.5k for the Ronald McDonald house, so I'm sure I can do this!! 

If anyone is reading this and happens to really want to sponsor me and help other children in the future then please do so by clicking on this link! :0)

https://www.justgiving.com/JessicasWallOfChinaWalk/ 

Here is some pics of what I will be doing! 

And just throwing this in too because Karl pilkington responded to me and that is totally awesome!! :0)

And then there's this too! 

10th January 2014

Aydan got to try a special walker out today! 

This is the kidwalk walker!

I did really like it, but Aydan just didn't seem interested in doing any walking in it, and ended up crying in frustration, so we took him out of it and we literally fell asleep straight away! Plus the wanted £1.5k for it, and as he is now cruising we don't want to spend that much money on something he might never use!

7th January 2014

Today we were at Alder Hey because Aydan was having some nerves testing done in his eyes!!!!

I've never seen this before so I was very curious, but it wasn't as bad as I was imagining!!!

He did very well, and I was so glad to have daddy with me because he didn't want to put his head in the light box!! Can't say I blame him!!!

This is him with his electrodes on :0)

We don't know what the results of this are and have to wait for them to come through, so I will let you all know as soon as I know something! :0)

The same day Aydan went to his child development session. He had normally 3 or 4 people there assessing him by playing with him and doing various activities with him! I can't remember what they all do, but one is a speech therapist and I think one is a play specialist!

These are the people who will be helping to get him in to nursery/school eventually. 

This is a picture from his CDS, but not his session. 

29th January 2014

So today Aydan went in for his PEG change to a Mic-key button! We didn't announce it on his Facebook page (hope for Aydan, his fight against tuberous sclerosis) because we didn't want people to worry! And then I just never posted about it! Some family still haven't seen it yet!!!

Well the day started off alright, he was to be nil by mouth from 7am so I got up early to give him some toast!

On the way to the hospital we got a phone call to say that his operation had been cancelled as they had no bed on HDU!! Because he hasn't been to Alder Hey for a long while, it was still on the system that he was on oxygen, so they believed that he would need extra special care after the anaesthetic! I told them that we were nearly there and was coming in anyway! There was a much lengthy debate and we managed to get them I agree to talk to the consultants! 

This was Aydan entertaining himself while waiting! 

By dinner time we had been moved from the beginning of the list, all the way to the back! Aydan was getting very grumpy and hungry!!!

Some point in the afternoon they agreed that they would do the operation for him, but because last time he was there, he had MRSA and they had to do him last!!! I was very annoyed!!!

He got dressed into a hospital gown and we tried very hard to keep him happy! The nurses even have him a special teddy bear to try and help!

We ended up being taken to the ENT ward and he managed to calm down a bit by watching Peppa pig! It was about 6.30pm by the time they took him for his operation and he had gone nearly a whole day without food!!!

The operation was very quick, and giving him the anaesthetic this time was so much better than the very first time he had an MRI and they pinned him down! This time he just lay licking the mask! Lol!!!

An hour after the operation, 2 rounds of toast and a drink later and we managed to finally take him home!!

This is his new Mick-key button :0)

25th December 2013

Well today was Xmas day, and after last year, this year is like a dream!!

We have gone a bit over board today, and ended up spending the whole day opening presents! Oops!!

It was so nice watching Aydan eating a pig in blanket! You will have no idea how much I longed for that last year!! 

Here are some pics of the great day!!

19th December 2013

My word! It's been nearly a year since I posted on here, and I really am truly very sorry, and I'm sure there will be a few people that are wondering what happened!!

Well I left you all on a bit of a cliff hanger really, but you cannot imagine how busy my life has been this past year, how many appointments we've had, or people we've seen!

Let me start by first telling you all that Aydan's PEG operation was successful! It wasn't very nice, and he was in some pain for a fair few weeks after having it done, but after catching MRSA it eventually healed up nicely!

After lots of physio we were eventually allowed out of Alderhey and sent back to Leighton hospital at the beginning of April, where we received a very warm welcome back from the staff there! They were all very pleased to see him, and one of the nurses who was with him the night of the ordeal came in to work and came straight to see him! 

We finally, after a total of 5 months, got to come home after spending only 3 days at Leighton! I will admit that it was a little scary at first as Aydan was surrounded by many new things! He still required oxygen, he had a sats monitor, and a feeding pump! It didn't take long to get used to them, and if I'm honest I actually slept much better at night knowing that the alarms would go off if something was wrong! Whereas before we had nothing!!!

Aydan at this point, although he had come a remarkable way, much farther than anyone could have hoped, was still a shell of how he was before! I stopped watching old videos of him because it would remind me of how he was before, and it would upset me! It still upsets me now! He could still laugh and he would briefly look at you, but for the most part he was trapped in his own little world. 

We were not at home long before we made the decision to go on holiday and get away from it all. It was the best holiday of my life, and being away from hospitals and appointments, and to just be a family again was what we needed! Aydan was so happy and smiley, and enjoyed every minute!

Not much longer down the line and Aydan caught a chest infection so was back in hospital. :0( 

The good news was that we we're let home again after being given antibiotics, as we had everything we needed at home anyway and was safer because of fewer bugs!

Aydan had frequent home visits from physiotherapists, occupational therapists, dietitians, health visitors, speech and language therapists, and over the past few months he has become stronger and stronger! We managed to get him back having hydrotherapy classes back in September and he is tolerating being in the water more and more. 

Some point a few months ago, I can't remember when, he went back to Alderhey to see the respiratory consultant. Aydan had decided a few months back that he didn't want his oxygen anymore and kept pulling his nasal cannula out!!! He was tolerating being on air really well! The only time you notice a problem is when he is lying on his right side, he is squashing his good lung and that can make his oxygen levels in his blood drop :0( other than that she was really thrilled. 

Sadly a chest X-ray confirmed that his left lung was still damaged and probably always will be now. He has now acquired the 'chronic lung disease label' because of this, but considering he isn't having oxygen at the moment that is a really positive sign! 

He has also recently had a hearing test and eye tests, and he has passed all those with flying colours :0)

Aydan is currently having child development sessions with various people and this is their plan to help crack Aydan out of his shell and try and work out how we are going to start communicating with him again as he can often get really frustrated!!!! He loves these sessions immensely and the staff have to run around chasing him! It can be really funny!! 

Aydan is no longer having milk through his PEG and hardly sees the dietician at all anymore because he is back eating and drinking pretty much normal again now! 

Not that long ago Aydan got to see his neurologist (Dr. Curran) and he was absolutely thrilled with Aydan's progress that he has been discharged from neurology!!!! So exciting! Let's hope there's no more developments for him! 

Well after all that exciting news I will round it all up and give a brief explanation of how he is now! He's due to go for a PEG change in the next couple of weeks, he will have a smaller one called a MICKEY button. 

Aydan still cannot walk, but he tries so hard and can definitely cruise :0) he is still very much in his own little world, but the breakthroughs are more and more often and he is starting to babbles a few very nice sounds out! :0)

So there you go, a very short post describing in brief the past 10 months :0)

I shall finish by adding a picture of him! 

11th February 2013

Today we got to meet the Gastro team again.

They have managed to book Aydan in for a PEG tube (tube that goes into his stomach through his belly) and this operation will take place on the 28th of February.

Although this sounds a bit drastic, it will actually make his life so much easier, and as he was on a ventilator for so long they expect it to be a while before he can drink liquids again!

To prove why having a PEG fitted will be better for him, Aydan decided to pull out his NG tube again today!  

Little Monkey!!

Daddy was very excited to report that Aydan had followed him briefly with his eyes.

This is very exciting as we have been warned that he may be blind after all the brain damage he has. 

8th February 2013

Aydan received a very special package from a charity called Pop 'N' Grow today.

This charity makes special pajamas for special children

As you can see in the picture he has popper in his sleeves and sides which is great for children who need cannulas and other tubes etc.

You can see this charity here

http://www.popngrow.co.uk/

I have also managed to take this amazing photo of all the children together.

Aydan looks so happy :0D

7th February 2013

Today Aydan's withdrawals have been awful again.

It seems that some doctor thought it would be a brilliant idea to stop him having any sedation during the night 'because he is asleep anyway'

So now we have had him wide awake for hours :0(

His heart rate has been scaring me and has been jumping between 130 and 255 most of the evening, and he is clearly very unsettled.

I have had a word with them and have said that I only want the pain team assessing where he is with the sedations now.

Today he has also had a mysterious rash appeared and has been really puffy, and his oxygen need has doubled :0(

My poor little squish! 

It's just one thing after another at the moment. 

6th February 2013

Aydan had a very special treat today...

DAISY THERAPY!!

You can see on his picture how happy he is that she is sat next to him, and his body language was great!

There was lots of arm movement, moving his eyes and, well, he just looked so happy it was amazing!!

:0D :0D :0D

Speech and Language therapist has been to see him today and has decided that he is definitely not ready for food just yet.

At least I feel like someone isn't trying to rush him!!

5th February 2013

Another day, another EEG

but LOOK!!!

he's wearing pajamas!!!

His expression is saying 'I look real cool'

:0D

4th February 2013

Today was a very exciting day all round!!

My 2 older children have managed to get into a local school and have started today.

This means that we only have Daisy to entertain during the day now, and as you can see she has been washing Aydan today. :0)

She said 'I want to help you look after Aydan when he gets home.'

Bless her! :0D

I managed to get sneaky cuddles this afternoon.

I pulled the curtains around us, and then climbed into bed with him.

There was lots of happy moans from Aydan and it was only a couple of minutes before he went sleep! :0)

3rd February 2013

AYDAN HAS BEEN MOVED OFF ICU TODAY!!!!

:0D :0D :0D

He is now on Neurosurgical HDU.

Here he is in his new home!

1st February 2013

*SIGH*

Another day, yet more bad news :0(

Aydan's neurologist has taken me into a side room to talk to me about his recent MRI scan.

It seems that Aydan has lost a lot of brain mass from the previous MRI they did 2 weeks ago, and they believe this to be conclusive of cerebral atrophy. :'0(

Basically it means that his brain has wasted away and shrunk quite a lot.

This means that he is a lot more brain damaged than we first originally thought, and sadly there is no cure for it, we can only hope it improves with time.

I was initially upset over this news, but when I went to see him again he was smiling his head off and cooing at Peppa Pig.

At the end of the day so long as he is HAPPY then that is all that matters to me! :0)

31st January 2013

Aydan is still doing amazing off the ventilator.

Unfortunately thought he seems pretty wired and hasn't slept since he was extubated!!

I suspect it's withdrawal as you get a lot of insomnia with that.

His temperature is much more stable lately and has been around 37.5!!

I knew that being on that cooling mattress for so long was bad and that his temperature would even out on its own if they just left him to it! :0)

Mummy's instinct win again!! ;0)

On another note we have been told that now he is off the ventilator that we can have as many cuddles as we want, but we have decided to take it slow for now because he needs to practise his breathing again.

30th January 2013

I am pleased to announce that Aydan has now officially been EXTUBATED!!!

Here is a picture of him wearing his nasal specs :0)

He is now on a special machine called 'optiflow' which is like high flow oxygen through his nasal specs, but they warm it up and humidify it for him so it's not too painful on his nose.

The next 48 hours will show how well he copes, and if he makes the 48 hours he should be headed the right way :0D

28th January 2013

Today I walked onto the ward to see that Aydan had some 'boxing gloves' on his hands...

apparently he has been a little monkey and has been trying to pull out his ventilation tube again!!

I can't say I blame him really!!!

Aydan had his micro bronchoscopy this afternoon, and I am pleased to say that bar a tiny amount of swelling, and some granulation on his vocal cords, everything is looking good for extubation.

They have decided not to do it today though and have been giving him some medicine which will help to reduce the swelling in his throat first.

I was very excited this evening as he actually managed to turn his head to look at me!! :0D

my little man really does make me proud every day! :0D

27th January 2013

Nothing exciting really happened these past couple of days so I thought I would just show you a picture.

:0)

The ward this end is pretty much empty and very quiet, which is quite nice!!

I have been talking to one of Aydan's consultants today and there are talks of sending him for a micro bronchoscopy, which I believe is like a normal bronchoscopy, only a lot smaller which will allow them to go further into his lungs.

They think he might need a tracheotomy because of how long he has been on a ventilator for.

They think his throat might be quite swollen and floppy, so depending on the results of the micro bronchoscopy, depends on what they will do!

Possibly extubation  (removal of lung tube) depending on how good everything looks.

25th January 2013

So happy today!

Aydan's (mummy's) necklace has arrived and it is beautiful!

The hand print is Aydan's actual hand print, which they have shrunk down and put on this pendant for me :0)

Aydan had to have another MRI done today.

They wanted to check to see how the brain damage was from 2 weeks ago.

Because he is full of cold at the moment he didn't cope too well with the general anesthetic and has had to be put back on full ventilation :0(

I asked a few people about his MRI results but no one was able to answer me other than they think everything was looking the same as before.....

At least they have managed to put his NJ back in while he was under the general anesthetic!

Apart from that he has been asleep most of the day.