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."

12th April 2012

Aydan has been for a third EEG at Alder Hey today

They didn't manage to get him to go sleep so hopefully they'll get the results the need! 

I will keep you posted on the results :0)

10th April 2012

When your child is diagnosed with something like this, every milestone becomes a massive achievement! Particularly as you're warned that they may regress at any moment!

I am also going to post all the milestones that he reaches, because I'm a very proud mommy, and there may come a day when he can't do these simple things again, and I'd like to be able to remember them!

Today is a picture of Aydan finding his feet :0)

5th April 2012

Today Aydan had to go and visit his new consultant and Leighton Hospital.

The consultant was really pleased with how well he has been doing with his medication, and has given us a special letter which means that if Aydan has a couple of seizures, or a really bad seizure that we can take him straight to the Paed ward rather than go through the doctors or A&E as they probably wouldn't know what to do with his condition anyway!

We discussed briefly a few things that may happen in the future, but for now it's playing the waiting game.

We are still awaiting the results from his genetic blood test, but that could be ages yet.

Aydan typically had a seizure around 4pm, but as it was only a very mild one and just the one cluster then we didn't worry about it! It's if he gets a couple of clusters in a few days that we have to take him back to the ward to review his medication.

As he is doing really well at the moment I am keeping everything crossed that he remains to do so well!