My one big worry was that JJs upcoming heart scan (22nd August - I remembered whoo hoo!) would put the mockers on the whole ball game, and play would be postponed for quite a while. So up at the crack of birdshit me and the wife got, ready to make our way to St Guys and Thomas' hospital for our 9am appointment.
We went by cab, with a really cheerful cabbie (read miserable bastard) and JJ slept for the whole way, except for a slight moment, when he fulfilled his current fave hobby of eating. This was quite a result. Things were looking good.
When we entered the room, there were 5 people there. The cleft surgeon who will operate on Josh, his future speech therapist, his cleft nurse, a registrar and some 12 year old bird on work experience......well she looked about 12, I'm sure she wasn't. All of these people (except work experience girl) will be his cleft team, hopefully for the majority of Joshuas life up until he is 18, but at the very least its the team for the foreseeable future.
Its upon walking into a room of all these professionals that I got the first proper realisation of how big this job is. Its a long term plan, with long term goals and nothing is going to be done overnight. It feels quite daunting to think of it that way.
So what was the consensus? Well, the cleft surgeon had to wake Josh up and have a ferret around his mouth, which it has to be said, Josh was more than upset about. It appears he doesn't like people poking about in his gob, who'd have thought it?
But other than that, the resulting conversation was fairly good. Joshua actually has a bi-lateral cleft of the lip, which just means a cleft on both sides. Previously we were told it was unilateral.
He has the incomplete cleft of the right hand side, and what is called a microform cleft of the left hand side. You have surely noticed the cleft of the right, but probably missed the microform, it basically looks like a scar (as for all intents and purposes that's exactly what it is). In the pic below you can see it clearly.
He also has a cleft of the gum on the right hand side only, although this is slight. As we suspected he also has a full cleft of the soft palate, with a very small, teeny, tiny cleft of the hard palate adjoining the soft. So the back of the roof of his mouth is essentially open in two parts.
You know that dangly bit at the back of your throat? Well that, my friends is called your Uvula, Google says so. Josh has two of them, (Well, one in two halves), one on the right hand side, and one on the left. Cool as penguin piss it is!
As previously mentioned JJ hates mouth ferreting, so below is the best pic I could get, when he was yawning!
You know that dangly bit at the back of your throat? Well that, my friends is called your Uvula, Google says so. Josh has two of them, (Well, one in two halves), one on the right hand side, and one on the left. Cool as penguin piss it is!
As previously mentioned JJ hates mouth ferreting, so below is the best pic I could get, when he was yawning!
The surgeon expects Josh to have surgery to fix the right hand side incomplete cleft before Xmas at the very latest. He expects this to be fairly straightforward, and he is confident of a good result. He wants to leave the microform alone for the time being, as there is no point in swapping a scar for a scar, but may want to do do some revision on it in the future if it gets any bigger as JJs face grows.
He was also confident that the gum notch is that slight, that JJ has fairly good chance of his teeth being minimally affected, but will look closer when he does the lip repair.
The palate repair will happen about 3 months after the lip repair. There is a 50/50 chance that after the operation Joshua will need speech therapy to help him pronounce B's G's D's T's etc, and after that a further 25% chance that he will need further palate operation to help with his speech further.
That was it. That's all we know up until the heart scan on the 22nd, after which, dependent upon the diagnosis we will get an early or later date for the op.
So how do I feel about it all? Well as far as clefts go, Joshua has an unusual combination, but the fact is, he actually has very mild clefts and thus the operations to fix them have a higher probability of garnering better results. So I'm quite upbeat about the whole thing, as is the wife. Lets just see what Friday brings and then we should have a much clearer picture of the situation.
My latest fave photo of the little dude. I will try to do a blog mid week, as the one on Friday will obviously be about the heart scan, so will try for a more fatherly one before then - I think the medical ones, ironically, make for harder reading!
The Blog
This blog has been somewhat of a success really. It has had nearly 800 unique page views since I started 6 weeks ago, much more than I suspected. Viewers from America and UK mainly, but some from Australia, France and Germany too. I have actually received a personal message from another dad who wanted to thank me for writing it as its helping him prepare for the birth of his cleft baby, which really meant a lot.
To help me out, if you enjoy the blog, I would just ask that you give it a little "like" on Facebook below, or +1 for Google+. If you feel like leaving any comments, if you could make them below. It all helps with the Google rankings, and if this blog could be of use to a few more parents, even a little bit, that would be awesome.
Thanks for reading.
That was it. That's all we know up until the heart scan on the 22nd, after which, dependent upon the diagnosis we will get an early or later date for the op.
So how do I feel about it all? Well as far as clefts go, Joshua has an unusual combination, but the fact is, he actually has very mild clefts and thus the operations to fix them have a higher probability of garnering better results. So I'm quite upbeat about the whole thing, as is the wife. Lets just see what Friday brings and then we should have a much clearer picture of the situation.
My latest fave photo of the little dude. I will try to do a blog mid week, as the one on Friday will obviously be about the heart scan, so will try for a more fatherly one before then - I think the medical ones, ironically, make for harder reading!
The Blog
This blog has been somewhat of a success really. It has had nearly 800 unique page views since I started 6 weeks ago, much more than I suspected. Viewers from America and UK mainly, but some from Australia, France and Germany too. I have actually received a personal message from another dad who wanted to thank me for writing it as its helping him prepare for the birth of his cleft baby, which really meant a lot.
To help me out, if you enjoy the blog, I would just ask that you give it a little "like" on Facebook below, or +1 for Google+. If you feel like leaving any comments, if you could make them below. It all helps with the Google rankings, and if this blog could be of use to a few more parents, even a little bit, that would be awesome.
Thanks for reading.
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