19th May 2012

It's been a lovely quiet few months here!
He's had a load more teeth come through, and I was worried that they would trigger off more seizures as i have been told that teething can do, but other than spacing out a bit every now and again he's not had any of the spasms! (although will mention the spacing out when I next see his consultant in July!)
We've also just had the letter come through which gives us open access to the children's ward, and lists the name of the emergency rescue medicine he needs to have if he has seizures/spasms which last longer than 30 minutes! (Buccal Midazolam)
Aydan also needs to go to the ward if he has a few seizures (clusters of spasms) very close together for a review of his medicine.
Let's hope he never has to have the rescue medicine!

1st May 2012

Aydan's 1st Birthday

Today we all celebrated Aydan's 1st birthday!

He had a wonderful birthday filled with lots of visits from family and friends, lots of cake, presents and cards! :0)

I love my little man so much, and it makes my day waking up to his beautiful smiling face every morning

28th April 2012

Just been discussing Aydan's sleeping problems with a few lovely ladies on a forum I go on, as he wakes roughly every hour and a half through the night, drinks about 8ozs of milk, then goes back to sleep again! This is making a very tired mommy!

One of the ladies suggested that it might be apart of his epilepsy/TSC, and it had never occurred to me before, but I think she might be right!!

I did a bit of research and it seems that 90% of TSC patients have some kind if sleep disorder, something to do with them not going through the complete sleep cycle and the epilepsy waking them up.

It doesn't really say a lot about what they can do for them, some doctors will occasionally allow them to have sleeping tablets so that the parents can get some rest! But to be honest this horrifies me slightly! I don't want to give my baby drugs just so I can get a bit more sleep! Plus the sleeping pattern doesn't seem to affect him much as he's never really grumpy!!!

Will just have to accept the fact that I have a baby that doesn't sleep much, and try and work it with daddy so we can take shifts, and catch up on sleep that way.

Poor little man! But I expect that more things will start coming out of the woodwork as he gets older, and thankfully this doesn't seem to be an issue for Aydan, just a tired mommy! Lol

Seeing that beautiful smile every morning makes all the sleepless nights worth while :0)

24st April 2012

Today I have finally got around to sorting out a JustGiving fundraising page 

So far I have made £93.00 which is going to the Ronald McDonald House Charities at Alder Hey 

(Charity Registration No. 1008765)

"Ronald McDonald House at Alder Hey Children’s Hospital provides accommodation totally free of charge for the parents and carers of the most critically ill children who are in patients in Alder Hey Hospital. The House has been open for 16 years, more than 15,000 families have been accommodated in our 70 family rooms. The House is full to bursting every night with a waiting list of 20 or more families. In 2010 the Charity is hoping to open 15 family apartments for long stay families ( 6 months or more ). RMH at Alder Hey is the biggest RMH in Europe with running costs of £400k per year, the estimated cost for the new development is in the region of £1.5 million. There has never been a better time to support the ‘’ House that love built’’ "

I have been knitting some beautiful items, which people have been buying off me, and I have some lovely projects still to come, plus some very generous donations off friends and family.

If you would like to donate towards my cause then please click on the link below

http://www.justgiving.com/AydanBranOakes

 Without the RMCH it would have made life very difficult for us because of the distance travelling to see him, and having to find people to look after our other children. A worry which you don't need while your child is in hospital! Their onsite 'home from home' made it possible for us to all stay together.

20th April 2012

Today we have had another letter from Alder Hey

This one is regarding an appointment for ophthalmology.

I've never heard of that before but apparently it's something to do with the eyes.

The letter says that he will need eye drops to widen his pupils so that they can see the back of his eyes, and I am guessing that they will be checking for tubers as well as any other kind of eye sight problem.

That's not till the 6th July though so we have a bit of a wait!!!

I thought I would also add another video!

This is one of Aydan in his baby swing and he has learnt how to make it swing all by himself!

(He is strapped in by the way, although it doesn't look like he is!!)

19th April 2012

I've got to share this video

Basically Aydan has found his reflection on one of his teddies and his reaction is sooo adorable!!

WARNING!! MAY MAKE YOU LAUGH!! ;0)

14th April 2012

Just received a letter to say that Aydan's Kidney Ultrasound was normal.

This is a huge relief as I've read there can be a couple of problems involving the kidney's in TSC patients.

He will still have to have regular Kidney Ultrasounds to monitor them.

I've copied and pasted an abstract from a website in case anyone is interested in reading more about this concern taken from HERE

"Kidney problems such as cysts and angiomyolipomas occur in an estimated 70 to 80 percent of individuals with TSC, usually occurring between ages 15 and 30. Cysts are usually small, appear in limited numbers, and cause no serious problems. Approximately 2 percent of individuals with TSC develop large numbers of cysts in a pattern similar to polycystic kidney disease during childhood. In these cases, kidney function is compromised and kidney failure occurs. In rare instances, the cysts may bleed, leading to blood loss and anemia.

Angiomyolipomas-benign growths consisting of fatty tissue and muscle cells-are the most common kidney lesions in TSC. These growths are seen in the majority ofindividuals with TSC, but are also found in about one of every 300 people without TSC. Angiomyolipomas caused by TSC are usually found in both kidneys and in most cases they produce no symptoms. However, they can sometimes grow so large that they cause pain or kidney failure. Bleeding from angiomyolipomas may also occur, causing both pain and weakness. If severe bleeding does not stop naturally, there may severe blood loss, resulting in profound anemia and a life-threatening drop in blood pressure, warranting urgent medical attention.

Other rare kidney problems include renal cell carcinoma, developing from an angiomyolipoma, and oncocytomas, benign tumors unique to individuals with TSC."