Marcus and Tash came for dinner. They're living in Australia now. It was the first time i met them. I loved showing them what i can do, we had quite a few 'conversations' too! Hope i see them again sometime soon, you never know, maybe we'll visit them in Australia!
Had physio today. I was very lazy, didn't really fancy doing much. I did show Katherine how i can crawl, and I'm also getting much better at standing. Mommy must make sure i kneel more and try and learn to pull myself up. We're waiting for a table to arrive that mommy ordered, think it'll be really good. It can be any height, so i'll be able to sit at it and play, kneel at it and play and stand at it and play.
Mel told mommy to watch a programme on tv a couple of month's ago called 'the girl who never ate'. Mommy forgot to watch it though. A 7 year old girl from the UK went to austria, they got her to eat, this is after taking nothing orally in her whole life. Well, mommy's been doing some research and we're off to Austria too. to a university in Graz. They wean children off tubes. they have a 96% success rate, dealing with all children with mild to severe disabilities. It's called 'controlled starvation'. It's going to be very stressful, for me and for mommy and daddy... but definitely worth a try. Imagine if i'm eating by christmas time, i could even try some christmas cake. The professor said that more and more children are being fed by ng tubes, this is because of the advances in medicine, more babies are surviving... ie with heart conditions (like me!), and premature babies, and a lot of these kids need feeding tubes, just like me. She said they save lives, but are a short term fix, that there isn't much research on weaning kids off the tubes.. so that's what she does. They will take my tube out and starve me, but make sure that i have all my nutrients. I won't be in any danger cos there's a full medical team there who will be keeping an eye on me. The professor said the fact that i reject food is a sign of 'intelligence'. I am being clever about it, i know the tube will feed me so why should i eat? The prof will hopefully change all that. So all you readers of my blog, please hold thumbs for all of us, and pray that i'll be enjoying christmas cake on the 25th december! thanks Mel for telling mommy about the programme, she wouldn't have known about this place otherwise.
See this story:
http://www.iqc.ca/~gweihs/family/e-esstherapie.html
Went for my first occupational therapy session. I had an assessment. Apparently my fine motor skills are that of a 5 month old. Mommy's bought new toys that were recommended to her. They don't interest me at all, i think they're a bit too advanced for me. Surely if i'm 5 months developmentally for fine motor skills, i should play with toys for that age, then when i tire of those move onto the next? It's not like i'm gonna skip stages?! The one's mommy's bought are for 12m - 3yrs! I think these assessments aren't totally accurate. she wanted me to do stuff for her that i do at home, but i couldn't be bothered to do them then. So i get marked down, where sometimes i don't think i should! anyway...
Aunty kir is going to send mommy a recipe for play dough, that's meant to be really good and lots of fun to play with.
I had physio today, Tim came along to work a bit on my speech too. Katherine's really pleased with my progress. I crawled for her a couple of times, but wasn't my usual busy self. I felt quite tired. I fell asleep in the car on the way home... don't think i slept enough this morning. Mommy has to try new sounds with me, 't' and 'd', as well as continuing with the sounds i can already do. Also, i've been taking a few sips from a beaker cup lately, but when i get to the 3rd sip i spit it out. Tim's told mommy to let me stop at the 2nd sip until i'm ready to move to the 3rd. Patience is the key and i must always have good memories/experiences of my food play, drinking etc, or else my aversion will be even harder to get rid of. Katherine said i must stand at a table and play with toys, mommy must give me light support and make sure i'm standing straight and not leaning to one side. I also have to practise the sitting to crawling position and especially learn to bear weight on my left side, i prefer my right side you see. I also have to learn to go from kneeling position into standing position. It's all really exciting, I'll be able to explore so much more!
Here's a picture of Tim and Katherine giving me therapy.
Here are some recent pictures of my cousin Maja, who lives in Zimbabwe. I hope i get to stroke a lion cub too some day! mommy will have to take me to Africa when i'm a bit older... I've been once already but there's lots to see there. I hope she takes me on a safari, so i get to see giraffes, lions and elephants like my cousin Maja has! I'm a lucky boy aren't i, i've got such gorgeous cousins :-)
I've been trying to crawl for a little while now, tonight i did it! i crawled right across the floor without falling. Mommy and daddy are so so proud of me, they didn't expect it so soon but i've showed 'em :-)
I'm going to be into everything now, best mommy and daddy make the flat more child friendly. It's onwards and upwards now.. wonder when i'll start walking?
They're having champagne to celebrate!
I've been referred to a gastroenterologist at great ormond street. My tests came back showing i have mild-moderate reflux, so this means i have to have a fundoplication when i get a gastrostomy. Mommy's not very happy about this, it means another long operation for me. If i keep the ng tube in for too long it'll start affecting my speech, so we'll probably have to go with it. I don't think i'll be eating anytime soon, so...
here's a link that describes a fundoplication
http://www.ich.ucl.ac.uk/factsheets/families/F060261/index.html
here's one that describes a gastrostomy
http://www.ich.ucl.ac.uk/factsheets/families/F000380/
If i go ahead with all this, they're going to look at my blocked tear duct while i'm under, to save me having another general anaesthetic. Mommy's going to ask if they can look at my undescended testes at the same time, kill 2 birds with one stone.
Mommy and daddy went to vicky's wedding tonight. Linda came and babysat me. She's the perfect babysitter cos she's been looking after me the past week while manny's been away, so she knows how to feed me, she knows when i'm tired and knows when i want to play.
I think mommy and daddy had a really good time, they were a bit late coming home but Linda didn't mind. I've attached a picture of Vicky and Jack, they look really smart don't they, happy too!
Daddy took me swimming today. The usual teacher wasn't there and we had a stand-in. she wasn't very good, she made us do silly stuff, can't wait for the other teacher to come back. Mommy's changing my feeding routine today, i've been having 140ml of the new milk five times a day, they're now going to feed me 190ml 4 times a day. They want to have a bigger break between feeds in the hope i'll experience some hunger and want to eat something. Don't know if it'll work though, we'll have to wait and see.
It was mommy's birthday. We all had a really good time. Lizzy came around early afternoon with India and Tara. We're much more aware of each other now, we're also all trying to crawl so it was a bit chaotic. Mommy and lizzy had to keep an eye on us cos we were all over the place! A few of mommy's friends came around for a bbq. We hardly saw daddy cos he was cooking. We sat on the grass and played. India and Tara are really good fun, they're sitting so well now, it's amazing how they've come on. Daddy made lots of delicious food for everyone, it was late when they all finished eating. We sat outside by candle light. I loved watching the flames. Emma (simon's girlfriend) held me and i fell asleep on her shoulder. I like emma, she's going to be looking after me for a week soon while manny's on holiday. Can't wait!
Happy birthday mommy!
I went to the palace today for cranial osteopathy. They are closed for the summer holidays but they open for about a week mid-way to give everyone a chance to have therapy. Mommy was also allowed to have therapy but she said no, she had to get me home cos i was hungry and tired. Lizzie did the session, she was a really nice lady. She worked a bit on my blocked tear duct and around my head, she said it felt tight from my mmr jab. It took me a while to settle down (i'm a real wriggler now!), but once i did i really relaxed and enjoyed it.
I really like this story. I don't like being stared at in the street cos of my tube. I want people to see me for me, not for my tube. I quote from a friend mommy has made 'please see me for the baby that i am, not the tube i have strapped to my face'. thank you.
Two Choices
What would you do?....you make the choice. Don't look for a punch line, there isn't one. Read it anyway. My question is: Would you have made the same choice?
At a fundraising dinner for a school that serves learning-disabled children,the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its dedicated staff, he offered a question: "When not interfered with by outside influences, everything nature does is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?"
The audience was stilled by the query.
The father continued. "I believe,that when a child like Shay, physically and mentally handicapped comes into the world, an opportunity to real ize true human nature presents itself, and it comes in the way other people treat that child."
Then he told the following story:
Shay and his father had walked past a park where some boys Shay knew were playing baseball. Shay asked, "Do you think they'll let me play?" Shay's father knew that most of the boys would not want someone like Shay on their team, but the father also understood that if his son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.
Shay's father approached one of the boys on the field and asked (not expecting much) if Shay could play. The boy looked around for guidance and said, "We're losing by six runs and the game is in the eighth inning. I guess he can be on our team and we'll try to put him in to bat in the ninth inning."
Sh ay struggled over to the team's bench and, with a broad smile, put on a team shirt. His Father watched with a small tear in his eye and warmth in his heart. The boys saw the father's joy at his son being accepted. In the bottom of the eighth inning, Shay's team scored a few runs but was still behind by three. In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as his father waved to him from the stands. In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat.
At this juncture, do they let Shay bat and give away their chance to win the game? Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible because Shay didn 't even know how to hold the bat properly, much less connect with the ball.
However, as Shay stepped up to the plate, the pitcher, recognizing that the other team was putting winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least make contact. The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher.
The game would now be over. The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game.
Instead, the pitcher threw the ball right over the first baseman's head, out of reach of all team mates. Everyone from the sta nds and both teams started yelling, "Shay, run to first! Run to first!" Never in his life had Shay ever run that far, but he made it to first base. He scampered down the baseline, wide-eyed and startled.
Everyone yelled, "Run to second, run to second!" Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to the base. By the time Shay rounded towards second base, the right fielder had the ball ... the smallest guy on their team who now had his first chance to be the hero for his team. He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher's intentions so he, too, intentionally threw the ball high and far over the third-baseman's head. Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home.
All were screaming, "Shay, Shay, Shay, all the Way Shay"
Shay reached third base because the opposing shortstop ran to help him by turning him in the directi on of third base, and shouted, "Run to third! Shay, run to third!"
As Shay rounded third, the boys from both teams, and the spectators, were on their feet screaming, "Shay, run home! Run home!" Shay ran to home, stepped on the plate, and was cheered as the hero who hit the grand slam and won the game for his team.
"That day", said the father softly with tears now rolling down his face, "the boys from both teams helped bring a piece of true love and humanity into this world".
Shay didn't make it to another summer. He died that winter, having never forgotten being the hero and making his father so happy, and coming home and seeing his Mother tearfully embrace her little hero of the day!
AND NOW A LITTLE FOOTNOTE TO THIS STORY: We all send thousands of jokes through the e-mail without a second thought, but when it comes to sending messages about life choices, people hesitate. The crude, vulgar, and often obscene pass freely through cyberspace, but public discussion about decency is too often suppressed in our schools and workplaces.
A wise man once said every society is judged by how it treats it's least fortunate amongst them.
May your day, be a Shay Day.
We went to the heath today for a picnic with Mel, Marianne and sophie. We found a spot under a shady tree, i had a little sleep with daddy then played and had loads of fun. Mommy kept trying to make me stand on the grass, but it was tickling my feet and i kept lifting my legs up, I didn't like the feeling. I love the heath, it's really peaceful.
You're not gonna believe this but my friends Tara and India were on Holby City last night!!! I was so excited when i saw them on the telly, they are true stars! I bet their mommy and daddy are really proud.
I had my MMR jab today. It really hurt when they put the needle in, but i was fine as soon as they took it out. I may get a temperature tonight or in 10 days time, doubt i will though cos i was fine when i had my other vaccines, but i guess you never know.
I got home from physio today to find these gorge malorge pics of my cousins that aunty kir sent. they're so gorgeous just really want to put them on my blog and share, cos i'm one damn proud cousin. the only male cousin i might add... so reckon the girls will be a real 'asset' once i'm older. what you reck?!
Had a great physio session today. Tim, my speech & language therapist was also there, he wanted to see how my speech is coming along. Katherine was really impressed with how i'm trying to crawl. I go from laying down on my tummy into the crawling position, so mommy has to encourage me to go from sitting into the crawling position. She was given excercises for that a while ago but it's one she's always struggled with. I used to fight and put my legs straight so made it really hard for her. But now i don't mind it so much so it will definitely be easier. I'm loving standing too, Katherine said mommy must let me stand in my cot and she must show me how to hold onto the bars. I can't wait! Also to encourage me to kneel in front of a little table, that'll really build up my strength for when i want to stand. Wow.. the whole world is going to change for me, can't wait to be able to explore!
Tim asked mommy some questions about my speech. I don't do quite a few things. My speech is delayed cos i don't eat. Eating prepares you for speech, the use of the tongue when you suck etc is good practise for talking. But i don't do that, so talking will be a bit more challenging for me. Tim's going to make mommy a few picture cards of the main sounds. After food therapy she'll show them to me. When mommy and i have conversations she has to encourage more sounds, like 'ba, la, da'. I say them sometimes but not often enough. Mommy and i play peek-a-boo, but instead of saying 'BOO!', mommy says... 'where's luca....' 'there's luca!!!!' Tim told mommy she must say boo, that's a good sound for me to copy. Amazing that silly games like that can have such an impact on your speech, so there is reasoning behind them after all!
I've been rocking on all 4's for the past 2 or 3 weeks, well, yesterday when mommy came home from work i showed her and daddy my first attempt at crawling. I managed a small crawl backwards and forwards!! How good is that? I've got physio this afternoon and can't wait to show Katherine what i'm doing. Mommy and Katherine thought i'd be a bum shuffler, that's not a bad thing... but i've proved them wrong. I'm going to crawl and once i start i won't be able to stop. I think mommy and daddy have to make the flat more child friendly cos i'm going to be into everything. I'm so proud of myself i just wanna shout it from the roof tops!
Daddy took me swimming today. It was a 'free for all' day in that we could do what we wanted. They made waves in the pool and also little showers here and there so daddy and i had loads of fun. The waves weren't too high, just high enough so we could bobble up and down. I was totally exhausted when i came home so had a little sleep, swimming really takes it out of me. I started my new milk today, it's much thicker than the other one so is slow going down the tube but the volume is less so doesn't take any longer. I'm also starting to have 30ml of water after every feed. That should help with my constipation.
Mommy and i went to greenland to meet Jane. She's from KIDS. they help families with children with special needs. Mommy needed help filling out the disability living allowance form. It could be quite hard for them to get it cos i'm so young and all young babies need special care. They have to prove that they do over and above what other parents do for their children. They're very strict and mommy's been warned they could say no.. that it's easier to claim when i'm a bit older. mommy's trying to be optimistic about it.
This is a picture of me after having some food play at home. I'm really tired in this picture so look a little drunk! Mommy put lots of nutella on the tray, also some yoghurt and all these plastic sea animals. I held a spoon with some yoghurt on it and did take a bit of food. If i'm in control of what's going into my mouth i feel better about it. If mommy tries to feed me with the spoon i get cross and try and take the spoon away from her. I don't mind being messy though, that's a positive thing. I had a nice bath after this!
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.
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!
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'.!!!
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 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.
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.
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.
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.
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!).
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 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.
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.
