8th September 2012

Today we had some rather confusing news.

We knew back in April that he had a tumour in his heart, but we were told not to worry about it, and that it would have probably shrunk/disappeared by the time he's one, but we've just had a letter through from the consultant advising his GP of medicine increase, and under problems it says 'Cardiac Rhabdomyoma' and we have been referred for a scan in a few weeks, rather than the 6 months originally planed!

I don't know much about these, only from what I skim read earlier, but it doesn't sound great!

I'm keeping everything crossed that it is just a precaution and now that he is 16 months that it will have hopefully shrank/disappeared like they originally said!

His appointment to see his cardiology consultant is at the beginning of October.

I'm starting to think that the poor little man already has more consultants than I have seen in my life, and that is after 4 children!!

I have opened up another Just giving page, and this time donations will go to the Tuberous Sclerosis Association who help fund research into the condition.

TUBEROUS SCLEROSIS COMPLEX - WHAT IT COSTS

£68 will support 1 Hour of TSC Research

£98 will help us provide 1 Hour of Support Services

£507 will support 1 Day of TSC Research

£731 will help us provide 1 Day of Support Services

£2535 will support TSC Research projects for 1 Week

http://www.justgiving.com/AydanTSC

Thought I would cheer this blog post up a bit by adding a picture of Aydan wearing his pixie outfit my friend has made us for our wedding!

Here he is with his big brother!

Don't they look adorable?! :0)

18th-20th August 2012

We decided we needed a 'mini' holiday, so this weekend we packed our bags and went off to Butlins Skegness! (Literally as we only booked it the day before we went!!)

Aydan had a really fab time on the beach playing in the sand, and having a go on some of the baby rides!

I even managed to sneak him a naughty Burger King, as we don't have one round here, and he managed to eat a whole cheese burger AND some fries!! No wonder he's a little chunk for his age!!! 

Here is some photo's of the happy little man :0)

17th August 2012

Today we went to see Aydan's consultant for his regular check up.

His Vigabatrin has been put up to 1g twice a day now, so that is now the maximum he can be on for his weight (30lbs the little porker!!)

There are still concerns over his 'jittering' so an appointment has been made to see his neurology consultant at Alder Hey in October.

As Aydan is still not walking or talking a referral has been made to the community paediatric who will assess where he is in his development. I'm not too worried just yet because he is still only 15 months, and his older brother didn't walk until 18 months or talk until nearly 3!!

His consultant has also prescribed him 2mg's melatonin, which will hopefully help him with his sleeping, and I have to say that he was flat out within half an hour of taking one! (sadly didn't sleep through the night, but it's an improvement :0) )

So a very successful appointment today and a lot has been done/arranged :0D

16th August 2012

Today we took Aydan for his first visit to the beach.

I don't think he was too sure about the feel of the water between his toes!!

Here he is with his daddy :0)

14th August 2012

Here is a picture of Aydan playing in the garden.

He was sooo excited to have found this brush!

I had to share :0)