Firstly thanks to those of you who have read and commented on here, I didn't really expect anyone to. Now the pressure...people actually read what I write.
Our weekend
We have had a nice weekend and I'm starting to think Tom and I share common interests. I have evidence of this because he talks to me about it which is so cute. When I was pregnant and found out I was having a boy I didn't really think about the baby phase, I just thought about the cute toddler phase. Needless to say when he was born and was a baby I went into shock for a week or so. I hadn't really thought about what you do with a baby, then we got into the whole getting him to eat, sleep and burp thing and it was all fine. Anyway, now he does talk and it's lovely. I don't have hobbies as such but I like to go out to eat, go on holiday and go to the cinema and I think that Tom likes to do all these things too. Tom regularly says to me "can we go to a cafe and we will eat chips", a cafe for Tom can be a cafe, restaurant, fast food place or pub. So on Friday we went to Pizza Express for dinner and Tom ate olives, dough balls and garlic butter, A pizza (he did remove the mushroom because apparently they are yucky), strawberries and icecream, and mine and nanny's chocolate straws. Then we got into the car and he told me he was hungry so could he have some pomcorn (popcorn) so we went home and he ate some snackajacks!!
We took him to the cinema for the first time a couple of weeks ago and it was a big winner. We went to see Ratatouille which is a cartoon about a rat who becomes a chef in Paris. Tom loved the whole experience, the flip up chairs, the hotdog, the movie and the popcorn. When we drive past the cinema he asks if we can go there and eat pomporn. Pixar need to bring a new film out soon.
It's very handy that he can now tell us what he likes and sometimes embarrassing that he tells us and other people what he doesn't like.
Bilaterals
The fact that he can tell us all these things reinforces to me that we made the right decision when we decided to self fund his second implant after the NHS turned us down. Tom and I have made some new friends - a family who have a little boy who is about 3 weeks younger than Tom and is also profoundly deaf. He was born deaf due to CMV. His mum is an amazing mum to four boys. We met them because they emailed us asking about our appeal for funding for a second implant as they were now going through the same process. Their son has one CI but they feel that he would benefit from another one. They went before an appeal panel on Thursday and I got an email from them on Friday saying that they had been successful. This news is fantastic for them and their little boy. Their email said that it made them angry that we did not get the funding for Tom. Well if I am honest it makes me angry and sad too but that doesn't take away from the fact that I wanted them to get the funding because it will make their life much more straightforward than if they went down the private route. Had they been turned down it would have made me even angrier at the unfairness of the whole system.
So congratulations to them and their little soon to be bilateral man.
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4 comments:
Lovely post. Tom is obviously getting ready for his trip to Australia (has he informed you yet?), where "pomcorn" is bound to be on the menu.
Our experience of toddlers and mushrooms is opposite to yours. Our infant daughter LOVED mushrooms, any pizza or similar being consumed by an adult had to first be stripped of all mushrooms for her. Then a few years later, Yuck. Children are so different.
I so wish that we lived closer, I'd love to go see a movie with Tom. I'd love hear him chattering away, that little voice with your English accent would melt me.
I hope that a bilateral does for Ethan what it has done for Tom and countless other children. I've never spoken (online or otherwise) with a fellow CMV parent and am always wondering what other people are experiencing. How wonderful for that little boy and his family.
I'm so glad to see you blogging! I know I will love your writing...your comments are always so friendly and warm!
Tom sounds like he's a wonderful little buddy. By the time my son was Tom's age he already had a sister so I didn't get to enjoy a lot of the things you do with him...I was too busy to slow down and really enjoy him. I love reading about your experiences (and "porncorn" cracks me up!)
I am happy for your friend who has managed to secure bilaterals for her child...but yes, it's sad that you had to fund Tom's yourself...how frustrating! I'm just glad you were able to do it...judging from the way that boy talks it has been a huge blessing to him!
"pomcorn"
That's so cute I'm melting.
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