News - Lots of it

Hi everyone,

I promised to let you know how we have been doing, so here it is.

First of all, a lot happened that had a big impact on our future and our thinking. We had quite a few meetings with doctors and specialist to see what we can expect and the news is not entirely what we hoped for.

First of all we had a meeting with a 'Neuroloog' (Nerve specialist). He concluded that Noah has normal reflexes, so his nerves are there, but his movements are a bit primitive. This means his control is not as good as it should be, and something could be wrong with his nerves. Very many possibly / maybe / wait and see sort of stuff around this, but not everything is normal, that much is sure.

This was later confirmed by the developmental specialist, who also commented on the fact that although Noah is developing (and quite well at that), he is not catching up to his real age. In all reality he may even be getting further behind. This was also not what we hoped for, and does mean our future could be very different form what we dreamed of when Noah was born.

The revalidation doctor has very recently spoken to us, and because Noah is going forward they think he is ready for more intensive therapy, they are aiming at 3 days a week. A big step up from his current two mornings. It was very strange and a bit upsetting to visit his new school, where he will be going in the near future. It is the best place for him, and most parents will be envious of the level of attention that the kids get there. The reason that they need that much attention is another thing.... For the dutch people who are familiar with these kind of schools, he will be going to a pre-school day centre, attached to a TylTyl school.
We're still both happy and sad about it all.
A bit of good news is that the school has a school nurse, and will train their staff to take care of Noah's medical needs as well

A last bit of news came from the ENT (KNO) doctor, who was concerned about Noah's apparent inability to breathe with his speaking valve. He finds this very difficult and tiring, which is a bit strange. The doctor wanted to do another surgery to see if the reconstruction surgery is successful. We have postponed this surgery till autumn, because Noah is now developing very well, and we don't want to interrupt that.
Lately Noah is into chewing stuff and his breathing valve is one of his favourite objects to chew on, so we haven't tried it on him. So we'll have to wait for the surgery, but a very real possibility is that the reconstruction surgery was not completely successful, which means Noah will have to keep his canule for the rest of his life. Again many unknowns, but this could have a very big impact on our future.

So, not only news about his future, but also stuff that we are doing in the mean time.
For Noah, he now eats (most of his food) and is starting on somewhat more solid stuff. Drinking is still a problem, but a few sips is a lot more then before. He really seems to enjoy it, although he enjoys our home cooked food better then the little pots from the supermarket. A good sign!

His walking is also getting better, and he recently started crawling. So far only on soft surfaces (couch and bed), but it is very good to see. He has a more challenging walker at home now, and he actually seems to enjoy that on even more then his older, easier one. He walks up to his new one and grabs it if we put him in his old one. He still needs some more practice in turning around, but straight on goes really well.
Sitting up and turning over while lying are going really well, so he is really getting on with his large motor skills.

Also, Noah is now going to a day care centre on Monday. It is a specialized centre, with a nurse, so Louise has a day where she doesn't have to look after Noah. It took a lot of organizing to get it all set up, and get the staff trained, but it is going really well now. One of the carers also works at the revalidation centre, so she already knew Noah and is a firm favourite. They also made some school photos which I shall try and scan in to post here. This whole experience at the creche probably triggered the moving to three days of therapy as well.

Louise has been following an intensive baby signing language course this last month, and she has been really busy trying to get Noah to sign (more). Although with his fine motor skills developing lagging behind it is difficult to say what he can do but this week Noah signed "mamma" by touching her cheek instead of his own. So he's signing in his own way but for us it's a promising start!
Aside from doing all of this with Noah, she qualified last Saturday as a teacher! It is still the first baby steps in the signing world (literally), she is now qualified to teach baby-signing. So if anyone is interested in this, please contact her ;-) . In all honesty it is very cool to see babies that can't talk yet sign, and tell their parents what they want that way.

All this success, becoming a teacher has gone a bit to her head, so Louise has demanded her own car. No, just kidding, but she does need one to take Noah to school, as the communal taxi system will be way too time consuming. Also they will take Noah there (with Louise as nurse for the trip), but then Louise will have to struggle to get back home, and back to school for the return trip. She is not the handicapped one after all....
So, we have been looking for a little car that is big enough to put all Noah's stuff in, and small enough to park easily for Louise. The current option is a Kia Picanto, which seems to have the biggest and most accessible boot of all the small cars we've seen. Also promises to be reliable, with a 7 year warranty.

Me, I'm not doing much different from before. Work is going all right, with some (due to company and economic reasons dim) perspective of a promotion. I'm not holding my breath waiting for it, but at least it is going in the right direction, however fast or slow. For my self, I'm trying to come up with garden designs and time to do something with them. With buying a car there is no money left to hire anyone to do garden work for us. Luckily my parents come over every week, my dad to help in the garden (do most of the work it seems), and my mam to look after Noah, so I can also do some work.

So all in all, we are looking to a future still filled with unknowns, and probably lots and long term care for Noah. But Noah is going forward, and we will keep pushing him and the system to get as far as possible. The sky is the limit! Now on to more pictures!

Thijs