Week commencing 8th December 2008 – December is a good month for me. I was born on the 16th of it, I only had to stay in hospital for a few hours (after I was born!) and my special doctors from Great Ormond Street Hospital told mummy and daddy that my heart is no longer showing signs of heart failure!
I had my heart scan last week and my special doctors said my heart was working fine and I could start coming off some of my medicines. 2 stopped immediately and another is stopping on my birthday. That will just leave my vitamins, reflux medicine and warfarin.
I had to go back to hospital 3 times last week. The first time was for my blood test. I now know what’s about to happen when mummy and daddy take me to the DVT clinic… I get all upset as soon as I see the nurse that’s about to stab me and try to tell mummy and daddy not to let her do it… but mummy and daddy have to let her so I can have the right amount of warfarin. I got stabbed 3 times last week and was not a happy banana. As soon as mummy and daddy put my socks and shoes back on though I cheer up. It’s not nice being stabbed but it’s over fairly quickly.
After I’d had my heels butchered on Monday I had to go and have my heart scan on Tuesday. It all went very well and my special doctors were very happy with me. They said my heart was showing no signs of failure and, although my weight is still low, it is at least showing signs of gaining which is a good thing! After I’d had my heart scan I needed to have an ECG which didn’t take long. Then I had to go and see my home nurse to have my tube in my nose changed. She brought in reinforcements on mummy and daddy’s instructions, so I had 3 nurses holding me while my tube was changed. It’s a horrid thing to go through so I’m lucky it only happens once a month. My home nurse also weighed me and said I was now 11lb 5oz’s so she was pleased.
Daddy took me to hospital on Wednesday. We waited in a small room and then a nurse came in and told daddy to take my trousers off as he needed to stab my leg. Apparently this will help me fight any nasty coughs that I may catch and is quite a common thing for children with heart problems to have. I have to say it REALLY hurt! I cried for a little bit and daddy cuddled me as we waited in the little room again. We had to stay there for an hour to make sure I didn’t have any reaction. The only reaction I had was a sleepy one so I had a sleep in daddy’s arms until we could go home.
We then went back to hospital again on Friday so I could be stabbed again. Luckily it only took one attempt to get a reading and it showed my INR levels were stable enough for me not to be stabbed again for 2 weeks! Yippee! Then me and mummy had to wait while daddy saw his doctor about his operation last week. I’m pleased to say he’s doing very well.
Me, mummy, daddy and Dylan have been having lots of fun at home. Dylan likes to jump around and I love laughing at him while he is being silly. Daddy plays a game of ‘Shhhhh’ with me when mummy is in the kitchen. We creep up on mummy and tap her shoulder and mummy says “Who did that?!” and I crack up! It’s really funny. Then mummy does the ‘Shhhhh’ game while daddy is asleep. I tap him and he wakes up and tickles me. They really are silly parents but I love them to bits!
Mummy has been busy organising my birthday party on Sunday. I’ve never had a party before so I’m not sure what to expect but daddy says there will be jelly(?!?) ice-cream(?!?) and cakes and crisps and lots of fizzy drinks too so it sounds like fun! Daddy said he’ll do an update on Sunday night with some pictures to show everybody so be sure to have a look…
Mummy has also been very busy trying to make sure we win the competition she entered us into in November on Facebook. Things have started getting serious now as our local radio station and another paper from Norwich are coming to see us all to try to help us get some more votes! I think daddy is very impressed with mummy for all the work she’s done in trying to get as many people to vote for us! Daddy will let you know how we get on once we know the results of the competition. Below is the video mummy and daddy made for our entry.
I have a very runny nose at the moment and have been sneezing lots. Mummy says I have a cold but I feel hot so I’m a bit confused… I’ve been very good though even though I feel a bit unwell. Hopefully it will go soon and I’ll feel a lot better by Sunday…