Italy cont... cont...!

After Andy's wedding we drove to Macerata for Tobia and Wanda's wedding. It was another long drive (about 5 hours), i was really good in the car though, i slept a bit and mommy and daddy stopped every now and then so we could all stretch our legs. When we got to Macerata Tobia met us... he gave us his brother's apartment to stay in, we had it all to ourselves! It was amazing, so big and really gorgeous. Thank you Simone! (that's tobia's brother).


The wedding was the following day. It was in the most gorgeous church, right near where Tobia's parents live. Wanda looked beautiful and i thought Tobia also looked really smart. I got a bit restless during the ceremony but all i needed was a little walk to calm me down. There were loads of other kids there for me to look at and babble to.

















The reception was at tobia's mom and dad's house. I think they've got the best view in Macerata! The house is really amazing... and the food was good too, so mommy says. I don't think mommy's ever had bad food in italy! There was a band playing really authentic italian music, the atmosphere was great. Everyone loved me so much... i had so many women coming up and saying 'bellissimo... grande'... it was very funny! I loved it cos i got to flirt, i love flirting!


















The day after the wedding we went for lunch with Tobia and Wanda. They took us for a walk around Macerata old town. It was really beautiful, but very, very hot. We were all sweating a lot. But i'm glad we saw it.


















After the wedding we drove to Porto San Giorgio, we followed Tobia and Wanda in their car. It's by the seaside. We stayed in Tobia's holiday home there. I got to have a swim in the sea with daddy.. we had to go early in the morning though cos it was too hot for me to stay on the beach. it was about 38 degrees!! It was good fun there, we all slept a lot, i think it was cos of the heat.

Italy cont...

Daddy went to collect our hired car. They stuffed up our order so we got an upgrade! we went from ordering the cheapest car to getting a nice, big family car.. yeeeeehaaaaa! Thank god cos we had so much stuff. We drove for 5 hours to tuscany to go to andy's wedding. It was a long drive but we had such a cool car we didn't care! The wedding was in a little place called monticchiello. We had a pre-dinner at a restaurant in the main square. It was noisy inside so mommy and daddy took it in turns looking after me outside.

We stayed in a gorgeous little place in monticchiello, i even had my own cot! There were lots of mosquitoes but luckily they only liked mommy's blood and not mine. We went for walks around the little village before the wedding.





















We had andy's wedding the next day. She looked beautiful, like a real princess. The ceremony was in a beautiful church, then we all drove to teri de nano for the reception. The views were amazing, apparently the food was great (i wouldn't know!) and the company was perfect. I had a great time. Mommy had a very late night, it was her turn to party... daddy was going to get his chance at the next wedding!

Italy

I went to italy for the first time. it was so hot, i don't think we'll go again in july or august time. We went to milan first. I celebrated my first birthday there, the 18th July. I got lots of lovely presents and everyone had a delicious lunch. Mommy bought me an ice-cream birthday cake, in the hope i'd have a bit. I didn't want any though, mommy sneaked some into my mouth when i wasn't looking. tut. Nonna bought me my own little chair to sit in, how cool is that?















I had a great time with nonna, nonno and elisa. Mommy and daddy went out the one night and left me with nonna. They found a bar and guess what it was called.. 'Luca's bar'.!!!

Swimming

We go to italy tomorrow so i'm missing swimming next week. I made the most of this session though, daddy put me right under the water 3 times... i didn't love it, but didn't hate it either.

Stuart takes me to therapies

Stuart took me to feeding therapy and hydrotherapy today. I think he enjoyed it as much as i did! He really knows how to get down to my level. He left his swimming costume behind though so someone else had to take me into the pool, but i didn't mind at all.

Dietician

My new dietician came to our house today. She's given us new milk. Because i'm not eating solids yet i have to have milk that's more nutritious and complete. It's on prescription so mommy and daddy won't have to pay for it, it'll also be delivered to the house when they need it. I have to try one milk for a month, then if i tolerate it we'll change to another milk. The good thing about it is mommy and daddy won't have to feed me so much and as often because it has a higher volume of calories. that'll leave more time for them to do food play with me and physiotherapy.

Barium meal

I had to have a barium meal today. It's the second test they're doing to see how bad my reflux is before i get a gastrostomy. They put this liquid down my tube and took xrays, we could all see the liquid in my tummy, it was really weird. The liquid only came up once but i didn't vomit. After the test we got called into another room, we weren't expecting it. My paediatrician had arranged for me to have scans, to try and find my testes. He found both of them, they are in the same place, both undescended. I'll probably have to have an operation, so long as the anatomy is ok and no tubes are blocked. Let's hope there are no major issues there.

Care plan meeting

Mommy and daddy had my care plan meeting today at greenland. All my therapists discussed what our goals were and what we want to achieve, and if there was anything that they were unhappy with. It went well, mommy's asked for more one-on-one sessions with Tim, my speech and language therapist. She's worried about my feeding issues, there's not much progress being made. I'm not ready to eat yet though, but think it stresses everyone out. I'm not stressed about it all... i'm getting fed and that's the main thing.

Physiotherapy

I'm still working on my crawling. mommy has to put me on all fours and bring my legs right under my tummy. I can't stand that position. I didn't enjoy this session, it was too much hard work... I moaned a lot... Katherine stopped the class early (phew!).

Visit to my paediatrician

Mommy and daddy took me to see my paediatrican this afternoon. He had a look at me. He's a bit worried about my testes, one is undescended and he can't find the other one. Mommy and daddy were told ages ago by the geneticist that one had definitely descended so they're a bit confused.

Mommy goes back to work

Mommy decided to hire stuart. He came to look after me today while mommy went to work. I was fine, i didn't cry for her once! Mommy leaves the house at 7am while i'm still sleeping, then daddy wakes me for my first feed. Stuart arrives at 9am when daddy leaves for work. The morning goes so quickly, mommy's home by 2pm already. Mommy missed me a lot today, but i'm sure she'll get used to it. at least it's not for the whole day.

Swimming

Went swimming with daddy again today. they put arm bands on us, just to get a feel of floating. the teacher doesn't really believe in them cos she thinks kids become too dependent on them, but she wanted to see how we'd cope with a little bit of extra support. They didn't make much difference to me, i'm too young for them to make a difference really. i really enjoyed the swim though, i look forward to my lessons so much.

Reflexology

Mommy managed to get me a quick appointment before the school hols started. Yay!!!

Manny

Mommy's found a manny called Stuart to look after me. He's come highly recommended, he's looked after 2 other boys for the past 8 years and he's even worked at a school for children with special needs. Everyone speaks very highly of him and the fact that he comes recommended is a huge bonus. Mommy going to spend most days this week with him to make doubly sure though.

Mommy sacks my nanny

Mommy has to go back to work on the 26th. She's going back morning's only so she can spend the afternoon's with me. yay!!

the nanny came to learn how to feed me. mommy showed her everything and told her how much i hated to eat. i was laying on my playmat and the nanny gave me a bit of a sweet. it fell to the back of my throat and i choked. Mommy put me on her knees and slapped my back really hard. i was so scared, i couldn't breathe at first, but then i had a vomit and everything was ok. Mommy sacked the nanny that evening, she didn't feel right about leaving me with her... she's had to take next week off as hols to find someone else to take care of me. It's only for 5 hours in the morning, really hope they find someone nice.. don't really fancy choking like that again.

Busy day today

I had my feeding group this morning, then hydroptherapy, then mommy had to take me to the doctor's, we needed to get more supplies for my feeding tubes. It seemed like non-stop. I'm very tired and just want to sleep.

Hannah's birthday

It's my cousin Hannah's birthday today, she shares her birthday with her dad. She lives in Langebaan. I met her for the first time in april. She's great fun and made me giggle a lot, she used to pull funny faces at me. She's also a really great big sister to erin, i hope to see her again next year when we all go back to south africa for a visit. Happy birthday Hannah!!

Reflexology

Had my last session today for a while. :-(
They close for summer holidays.

Opthamologist

Went to opthamologist at great ormond street hospital today. They are worried about my blocked tear duct. they said it should've corrected itself by now. when i have a general anaesthetic when i get a gastrostomy they're going to look and check that everything's propertly formed. It'll just take 5 minutes. My vision seems fine though which is good. I really hope everything's ok with my tear duct though, really don't fancy another operation.

Physiotherapy

I'm still working on my crawling, really don't like that position much. Mommy has to push me more with that, but i'm now putting my arms out when Katherine rolls me on the ball, i never used to do that so i'm really pleased! I'm also sitting really well now too and reaching for toys more.

I have my first party!

It's not my birthday yet, we'll be in italy for that so mommy wanted to have a party with all her friends and the people who care about me. It was such good fun. We had a braai and mommy even baked me a chocolate cake.


She wasn't sure how to put a 'one' on it, but suzie who lives in new zealand had a great idea for her. She made a template out of paper and sprinkled icing sugar around it. It worked and was so easy to do! Thanks Suzie! I got to try a tiny bit of cake but i spat most of it out. I got so many presents, i really got spoilt. Tara and India came, it was really good to see them again.

Weighed at the doctors

Mommy takes me to get weighed every 2 weeks. That's if we're not on holiday or don't have appointments. i weigh 9.9kg's today! That's a really good weight. I'm quite tall for my age though and think i take after the potzas side with that!

Hydrotherapy

I had my first hydrotherapy session today. Katherine, my physiotherapist organised it. We went straight after feeding class. Daddy took me cos he's the one who swims with me on saturday so he thought it would be important to see what he could do with me at the swimming sessions. It was quite hard work, not the same as my saturday fun swims but i still enjoyed being in the water so can't really complain.

Reflexology

I had reflexology again today. It was really nice, i had a bit of a cough so mommy was shown what areas of my foot to massage to help my chest. the palace is closing soon for a few months for the summer holidays so i won't be having alternative therapies for a little while. But it's ok, i think we could all do with a bit of a break... I'll start them again in september. There's plenty for me to be getting on with in the meantime.

Physiotherapy

I had physio again today. We have to work on my crawling. Mommy has to make me lie over her legs so i'm putting weight on my arms. i HATE this excercise and always try to roll out of it. This has been the hardest one for mommy to do so far. It's all to get me to crawl though so mommy knows she has to do it, but i certainly won't make it easy for her!

Nonna and Nonno come to visit

I love seeing them, they give me so much love and attention. Nonna is impressed with how much i've changed and grown. She plays with me a lot. Mommy jokes that we're nearly the same size, i look much bigger when nonna's holding me cos she's so little! They took me for a walk to the shops in my buggie.

Feeding therapy

Had another feeding therapy session today. It's pretty much like the first one, i really enjoy it. Everyone's really nice and patient. It's good because it gives Tim a chance to see how i am around food. He can see that i bring my hands up to my face as a form of defence when someone tries to feed me. The only thing mommy can do for me is food play. I don't mind playing with food. I also don't mind having a messy face and messy hands, that's a good sign. I just don't like eating it! in fact, i like putting everything in my mouth except food!

My first swimming lesson

Mommy found a pool not far from home where we can go swimming every saturday morning at 8.30am. Daddy's going to take me but mom will watch. My class goes up till the age of 2. we play in the shallow water with toys and have a splash about, then we go to the deeper water, the swimming teacher shows daddy what to do with me. She said i'm a natural and was really impressed with how relaxed i am in the water. I love kicking my legs and making a splash. Sometimes daddy makes me go right under the water, when i come back out he laughs and jokes, i think it's to stop me from crying or panicking. After the swim we all go sit in the jacuzzi to have a chat and warm up a bit. the jacuzzi isn't very hot though, it's the temperature of my bath water at home.

Physiotherapy

I am getting good at putting my arms out to stop me from falling. I have to lean forward when i'm sitting, Katherine suggested using the blue vibrating snake for me to hold on to. That would encourage me not to fall back, it's meant to be better if i fall forwards. Katherine thinks i'm going to be a bum shuffler. Bum shufflers walk later than crawlers. This is because crawlers need their hands to explore, so will stand quicker.. bum shufflers already have their hands free so are in no rush to get walking! Mommy and daddy don't really care when i walk, so long as i walk sometime that's the main thing.

Are we moving house?

We all went to see a house that mommy and daddy are thinking of buying. I like it, my room's really small but it'll do for now. Let's hope it goes through and we can move in sometime soon. It'll be nice for mommy and daddy to own their own place. I'd be moving from camden borough to islington borough. Maggie who supplies all the tubes for me said that islington is a better borough for children with special needs. I think they're both good, as long as we stay in one or the other, they both have good reputations.

Maja's birthday

It's my cousin Maja's birtday today. She's 3. She lives in Zimbabwe. I haven't met her yet but i hope i do soon. It's horrible being so far away from all my cousins but London's the best place for me right now cos i get so much help and support. Her mommy (aunty sandy) is pregnant and is going to give Maja a brother or sister. Happy birthday Maja!

Feeding Therapy

I had my first feeding therapy today. Tim's my speech and language therapist, he's really fun! We sing a hallo song to everyone, they do sign-language at the same time, i found that really interesting cos i've never seen sign language before. We sing 'old macdonald had a farm..' and we have to dig out animals that they've hidden in jelly. Mommy has to guide my hand to reach though, the jelly's quite stiff and i'm not quite sure what to do. Then they stimulate my oral area. Tim has a vibrating thing that looks like a snake. I love biting into it and it wakes up my mouth and tongue! Mommy even bought me one off the internet cos she could see i liked it so much. Tim told us a story about a bear hunt. it was really good.. these kids sneak out at night and go hunting for bears. On the way they come to grass.. but they can't go under it or over it, they have to go THROUGH it, then Tim holds a bowl of lettuce in front of us to touch and taste. I like chewing on it but if any breaks off on my tongue i spit it out. Then the kids come to a river... they can't go under it or over it, they have to go THROUGH it. Tim holds out a bowl of water for us to touch and feel, i love water, i recognise it from swimming and my bath times. THEN they come to mud, they can't go under it or over it, they have to go THROUGH it.. this is the best part cos we get to eat melted chocolate, it's very messy and i get chocolate all over me but it's worth it! Then it snows and we get to touch marshmallows, they're all squishy and sticky.. i don't like them much. The story ends when they find the bear and tim growls at us with a teddy bear... it doesn't scare me though, i don't think tim growls like a real bear.. but don't tell him i said that ;-)

Physiotherapy

Had another physio session. Katherine's really pleased that i'm sitting! Now i have to learn how to put my arms out to stop me from falling over. I also have to learn to reach for toys, i hate that... i prefer it when mom just gives them to me. If mommy makes me sit and i don't want to, i throw myself back, she has to stop me doing that.. really don't know how she'll manage cos it comes so naturally to me. Katherine put me on a gym ball on my tummy and rolled me towards the ground, i didn't put my arms out so that's another thing we have to work on. I like pushing myself along the floor on my back, because of my low muscle tone i learn how to compensate. I'd find the easiest route to do things if i could, but mommy and Katherine are trying to teach me to do things properly. I'll fight them as much as i can though, i'm quite stubborn when it comes to my movement. Why make things harder for yourself?

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 :-).

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!

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.

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!

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.

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.

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 :-)

CDT

I've been accepted into my local child development centre! mommy and daddy are really pleased cos i'll get all the support and help i need. I had my first physiotherapy session with Katherine. She said i need to lie on my tummy more and mommy had to learn how to teach me to roll. I was really tired afterwards and fell asleep in the car on the way home.

Reflexology

I had my first reflexology session today. Anna's from Poland and when she touches my feet it tickles a bit. I found it hard laying still for her, i wanted to keep kicking about so i think Anna found it a bit tough working on me! i did enjoy it though and love the therapists at the palace cos they love me back.

Aromatherapy Massage

I went for my first aromatherapy massage at the palace today. Aleks is a very gentle woman, she massaged me with oils that smelt really nice. She had nice, relaxing music on in the background. i flirted with her a bit!

Baby massage

A nice lady at our GP came to our house to show mommy how to massage me. I loved it!! She used grapeseed oil, that's the best stuff cos it doesn't smell and is really good for my skin. Massage is really good for muscles and joints. I lie on a towel naked... it makes me feel so free and relaxed that i can't help weeing all over mommy's bed!!

Opthamologist

I have a new paediatrician called Dr Hodes. She's lovely, i really like her. She did a few tests with me, making me follow sparkly balls with my eyes. She didn't think i looked to my left really well so referred me to an opthamologist at Great Ormond Street. Mommy and daddy weren't at all concerned because they've seen me following things all the time, i was just being lazy with Dr Hodes. They did funny tests on me, i had to follow objects, they also covered one of my eyes to see how i'd react. They were happy i had no problems with my eyesight, the only thing we had to watch was my blocked tear duct in my right eye. It's quite common in babies and usually corrects itself.

Mommy and Daddy go out

Mommy and daddy went out to their friend's 40th birthday party. It's the first time they left me, but I was in good hands. Dawn and Mark looked after me. I had a great time with them and didn't miss mommy and daddy once!

Meeting Tara and India

Mommy and daddy took me to meet their friends, Lizzy and Justin. It's the first time i met the twins, Tara and India. Tara and I hit it off right away! I had loads of fun, they even let me sit in their special chair and let me share their toys. Mommy and daddy made lots of noise, they ate pizza and drank beers... but i had fun taking it all in. Really hope i see Tara and India again soon! They're just a little bit younger than me so i think we'll be good friends.

The Palace

Mommy takes me to get weighed every 2 weeks, it's important to keep an eye on my growth. We were at the GP and we met a lovely man and his 2 year old daughter. He started talking to us because i had my tube in and his daughter used to be fed by tube. His daughter has moebius syndrome, she'll never smile, never eat.. she has facial paralysis. It's very rare. He told me about a wonderful place called 'The Palace'. It's a charity that supports children with special needs. Mommy and I went to become members. I get to have all these great therapies; reflexology, cranio-sacral therapy and aromatherapy massage.. I can't wait to try them out!

They are all really nice people. I cried the first time i went because i think i found it a bit overwhelming, lots of people were saying hello to me at once. It's the first time mommy's seen me react like that, she laughed about it though.

Open Heart Surgery

They didn't really do the band tight enough. I was still getting really breathless and started showing signs of heart failure. They decided to go ahead and operate . They needed to close 2 holes, one large one in the atrium and one in the ventricles. They also had to take the band off the pulmonary artery. Mommy and daddy were confident it would be ok, there's a 99% success rate for the kind of operation I was having. I was in theatre for 5 hours, I did so well, a machine called a bypass kept the blood pumping around my body while they closed my holes. My grandpa gunter had a bypass once.

Luckily I didn't get an infection and was moved to Ladybird ward quite soon. Mommy and daddy took me for walks in a nearby park, they pushed me in a hospital pram, it reminded me of Mary Poppins... it had huge wheels and was so big i could've taken a friend along! I loved staring at the leaves in the trees, it was so nice to get some fresh air. We celebrated new year's eve in the ladybird ward, mommy and daddy had champagne and smoked salmon next to my bed, the nurse caught them but she didn't tell anyone. I went home after 8 days in hospital, I still had to take the diuretics.. just incase. My scar looks much bigger now, they cut over the first scar, but i don't mind because I'll be able to brag about it to my friends when I'm older.

Here are some pictures explaining what an asd and vsd are.

Nonna, Nonno and Elisa come for Christmas

We had such fun at Christmas. I loved staring at the lights on the christmas tree. Nonna, Nonno and Elisa played with me all the time and spoilt me rotten. Mommy cooked an english dinner for them, but i didn't have any because i'm still being fed by tube. I don't like food going anywhere near my mouth, i find it too difficult so i reject it, i turn away or shut my mouth. I know it stresses everyone out but i can't help it. I've lost my confidence, so it'll take some time.

Nonna played with me constantly. She makes me smile and laugh, I love all the attention. I miss them when they're gone. They live in italy, hope i see them again soon.