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Update – October 2012

2012-09-10 07.52.21

In my last update I was excited because it was summer. I like summer because I get to play outside and I love being in the park or our garden. But it was very wet most of the time so I didn’t get to play outside quite as much as I thought I would! I hope next summer is a bit better for everybody.

I had a heart scan with my doctor from London and I was really, really good as he put some cold slimy stuff on my chest and then put a magic wand in it! He showed me, mummy and daddy my heart on a little screen with lots of pretty colours. This showed Dr. Derrick how my metal heart valve was working and he was very happy to say everything was working just as it should be. He said I looked like a little doll because I’m still so small and I smiled a lot at him. He’s used to seeing me cry and get upset when he checks my heart but mummy and daddy have been practicing with me at home so I was much more relaxed this time. Besides, it was very ticklish and didn’t hurt one tiny bit, even though the slimy stuff was cold!Summer fun!

Mummy and daddy now check my INR levels at home so I haven’t been going to the hospital as much as I used to. It’s ok having my INR done at home but I don’t like it when the needle stabs me in the finger. Daddy always asks me what finger I want to be stabbed and I get to choose but it does make my finger sore for quite a while afterwards! My INR levels have been pretty good until recently so I’ve not had to chop and change my warfarin dose which is good.

I did have to go and see my ear doctor at the hospital and had some hearing tests to see if my hearing was any better. My ear doctor was very happy with the results and said my hearing was now normal so the grommits in my ears have helped a lot! A couple of days after I had my hearing test I got a sore ear though so had to have some banana medicine to make it better. Mummy and daddy now know that the banana medicine affects my INR so daddy tested me and found my INR was very high. I had to stop taking my warfarin for a few days and then my INR was much lower than it should be so I needed more warfarin to stabilise my levels. Hopefully it’ll sort itself out soon!

Away from the hospital there has been some big changes in my life. I don’t go to nursery anymore, I go to big girls school! My bestest friend Lola, who I went to nursery with, is in my class and I’m slowly adjusting to my new routine. My first week at big girls school was for just half a day so mummy or daddy would pick me up so I could have lunch at home. Then in my second week I stayed at big girls school for lunch before mummy or daddy picked me up. Now I stay for the afternoon too and when I get home I’m really, really, REALLY tired so mainly fall asleep on the sofa before I have my dinner!Big girls school is sooo tiring!

I like big girls school though. I have to have somebody with me all the time in case I fall over and go bump. My helpers also do my work with me and I’m learning lots of exciting new things! I like the computer which has a mousey like daddy’s computer. I like playing on it and moving the mousey! I also like the sandpit but the sand does get everywhere, even in my shoes!

I’m still not talking but I am making lots of noises now. Mummy and daddy always know what I want and they’re learning lots of signs so I’m very impressed with them. I do need to learn how to tell them when I’ve been hurt or if I have a pain though because when my ear was sore I couldn’t tell them so I just got very hot instead so they’d know something was up. They did and took me to the doctor who checked my ear and gave me my banana medicine. Mummy and daddy have shown me how to sign ‘pain’ now so if I do get unwell again I will try very hard to let them know!

Thank you for reading my update and please come again soon!

Tiana xx


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