Monday, April 17, 2006

My first time in an aeroplane

We flew 11 hours to cape town. I slept the whole way, my ears didn't hurt at all! Mommy was really worried i would suffer, babies are meant to suck their bottles or breastfeed on take-off and landing but i don't do either of those. I chewed my teether though and i think that helped. Aunty Kir, uncle Craig and my cousins Hannah and Erin were at the airport to meet us all. We spent a month in Langebaan. I met granny Stella and uncle Glenn for the first time. I had so much fun with Hannah and Erin, they both wanted to play with me and sit next to me all the time, I loved the attention. Mommy and Kir really tried hard to get me to eat in the first week. They even took my tube out for 24 hours to see if the hunger would change things... it didn't. I don't like food going into my mouth, i'm not used to it and i don't really know what it's for. I'm always fed and full so really can't understand why they keep trying to give me this stuff and expecting me to swallow it! I tried lots of different tastes but nothing excites me, I'd rather be fed by the tube, it's what i know and i don't want it any other way right now.

I felt sand between my toes for the first time and daddy let me put my feet into the sea, it was freezing cold so i couldn't spend too much time in it.



I went for my first swimming lesson with mommy and daddy in a small pool. The water was really warm so i got to spend about half an hour in there. I loved it!! I'm a real water baby and didn't mind my head being wet. Mommy and daddy are going to try and find a pool in London so they can take me swimming every week, it's very good for my joints and muscles.


We celebrated grandpa gunter's birthday in Langebaan. I've never met him, he's an angel now... but i know he would've loved me a lot. I'll get to meet him when i'm an angel one day. Daddy left to go back to London, he didn't have enough holiday. I really missed him but at least mommy was still with me. I had so much fun with everyone and dreaded the thought of leaving. It was so nice having my cousins around, i loved their company. Wonder if mommy and daddy are going to give me a brother or sister sometime? I think i'd like that.

I'm getting stronger now and even sat on my own for the first time while I was in Langebaan. I'm very proud of myself and it's nice seeing the world from a different perspective. I'm a little bit wobbly but can manage for short periods. I think i've surprised everyone with my progress, mommy and daddy are always told the worst scenario, i don't think the doctor's want to give them any false hope... it's understandable but can be frustrating, I'm a fighter and sometimes i want the doctors to acknowledge that! We were meant to leave on friday but we missed our flight, mommy thought we were leaving on saturday!! We were really lucky and managed to get home to london and i still got a cot on the plane, so i was happy cos i could sleep. Really hope we go back to Langebaan again soon, I'll miss everyone but at least i'll get to see daddy again :-).

Wednesday, April 12, 2006

Physiotherapy

I had physiotherapy today. She works me so hard. She's happy because i'm rolling but still prefer rolling to my right side rather than my left. I also need to spend more time on my tummy but i hate it! it doesn't feel right. Mommy has to make me reach for toys, i don't like reaching for them, i'd rather wait for them to be given to me. I'm lazy like that, if i don't want to do something.. I won't. Mommy's soft and usually does what i want in the end anyway. Katherine told her she must push me more, hope mommy doesn't listen to her!

Tuesday, April 11, 2006

PH Test

Mommy and daddy are thinking of getting me a gastrostomy. It's a feeding tube that comes straight out the stomach. I think it's a great idea, I hate the nasogastric tube.. i pull it out 2-3 times a day. It hurts when they put it in, I cry and try and fight them. I can't help it though, it's not nice having a tube shoved down your nose and throat, it makes me wretch and i wanna be sick. I had to have a PH test done at the whittington. If i have a gastrostomy the doctor wants to make sure that i don't have severe reflux. If i did have severe reflux i'd have to have a fundoplication at the same time as the gastrostomy. Mommy and daddy are hoping i won't have to have that, cos it's irreversible. I didn't like the PH test, they put a tube down my nose to just where my stomach starts, it was attached to a machine and mommy had to press buttons to record when i ate, slept, woke up. It was horrible cos i had a feeding tube in one nostril and a PH tube in the other! But we managed to do it and the results showed i have mild reflux. Hopefully that means i don't need a fundoplication but we have to do one more test to make sure. Mommy tried feeding me chocolate when i got home, because of my feeding aversions i get to eat things that other kids can't have! They're trying to make me excited about food, but it's not working, they'll just have to be patient with me.

Monday, April 10, 2006

Developmental Assessment

We went to see the developmental paediatrician and she did the Griffiths Assessment. She wanted to see what age i am developmentally. I'm a few month's behind but that's to be expected. I've had 2 major surgeries and i'm missing some of my genes, so think i'm doing really really well all things considered! Mommy and daddy are really proud of me. Elisa's still here so i'm happy!

Friday, April 07, 2006

Elisa comes to visit

Yay! Elisa came to visit us.. all the way from Italy. I loved seeing her again, she bounces me on her legs playing horsey and it makes me laugh. She's also not afraid to feed me and i like that.

Thursday, April 06, 2006

Cranio-Sacral Therapy

Today was the first time i had cranio-sacral therapy. Dascha's from Germany and she's going to have a baby soon. I loved this session, it's very relaxing and dascha and i smile at each other all the time. She told mommy she loves working on me cos i'm so well-behaved and happy.

Wednesday, April 05, 2006

Cardiologist

I had a check-up at the cardiologist today. I had an echo and they are really pleased with how my heart's working. It's as good as new! They've even taken me off the diuretics, so that's one less thing for mommy and daddy to do :-)