Wednesday 29 July 2009

I mean, he's never going to appreciate the lyrics to Womaniser if he can only hear it at a whisper!

Zack seems to have turned a corner since having his gastrostomy, and in typing that I hope that I haven't just jinxed things and we go back to endless vomiting sessions! It's been a tough two weeks, we struggled getting his food to stay down but now he is back to near enough the full amount he needs throughout the day. Chucking up has been greatly reduced to just a little here and there. I am amazed at how much a baby can puke, pee and poo all at the same time...but I'll spare you the details to that little session.

We now have a wonderful nurse who calls round to see us about his gastrostomy site. She is great for giving us advice on how it's healing and how he is doing with regards to his feeding. She also assured me that with some babies they can take several weeks to settle down so he is doing really well.....I can't work out whether she was just telling me that to make me feel better or whether he is really doing well, either way, I am glad he is getting on the mend.

Zack's medication for his epilepsy has now increased so I am hoping that we see a bigger reduction in his episodes. We also had a nurse come to visit us about his epilepsy. She was lovely too and explained to us that we still have a bit to play with in how much of this medicine we can give to Zack. The aim is to stop the seizures, although this may prove difficult we will have to see how it goes.

Other big news is Zack is going to have two baby hearing aids fitted. We went to see the audiologist consultant. She told us that even though Zack didn't pass his hearing test and only hears at higher decibel levels he does have fluid in his middle ear which could be affecting his hearing. He is two young to operate on to drain the fluid (plus I wouldn't want him to go for another operation), so it's a case of wait and see as to whether it sorts itself out as he gets older and bigger. The doctor said that we can either do one of two things. One, just talk to him loudly or two, get him fitted with some little hearing aids. For me there was no choice, I want him to hear the world around him, and to experience lots of different sounds and voices so I asked for the hearing aids. I know he can pick up some sounds and he does hear me when I talk loudly but that isn't the real world, how do I know if he can hear the birds sing or the cats meowing, or even Britney for that matter........I mean, he's never going to appreciate the lyrics to Womaniser if he can only hear it at a whisper! So next week we are off to have a fitting for his baby hearing devices, I can't wait to see how he responds when he has them in, I am hoping they will make a difference to his development. However this decision, although easy to make, also brought home the fact that it was just another little extra problem that Zack has to face. Sometimes it gets me down a bit as I feel that every appointment I go to it's one more thing which isn't quite right for him, it's very easy to for your mountain of hope to get chipped away at. But that was yesterday and today I feel more positive, I have to view these decisions as the right ones in order to benefit Zack, I have to give him the best possible chance and if it means hearing aids or god knows what else in the future then so be it. If it helps him, then we're in.

After the audiologist we had an appointment with the Physio. This is a new physio and she is very good but does make me laugh. She has a tendency to call Zack daaaaarrrrling, as in "Okay darrrrrling, come on then darrrrling". Then when he gets upset at being pulled about a bit, she picks him up, lifts him towards me and goes "Taaake, taaaake, take him please". In my head I'm going, "Noooo, keeeep, keeep, keep him." Her advice has been great and she gives me lots of pointers for exercises with his feet, legs and arms. She has also taught me how to encourage him to roll over which we have been doing a bit. However, due to his PEG we are having to leave off tummy time for a bit whilst it heals, not that Zack is too bothered, I think he likes getting away with not putting in some extra effort these days. Well, sickly boy can only play poor me for another few days and then it's back to work. Although it is nice to just cuddle him. Like today, it was absolutely pouring with rain outside so we spent the day all snuggled up having loads of cuddles and watching crap films on TV. Mummy ate lots of chocolate and Zack just had milk, good job I wasn't for sharing the chocolates.

2 comments:

leah said...

Good plan on getting the hearing aids- the earlier, the better! Our little guy got then at 4 months of age, and it has definitely helped. Nolan only has a moderate loss, but even with a moderate loss kids miss out on a lot of information. Those little hearing aids really do give them more access to the world at large, and from an early age!

n said...

Thanks for your comment, it's good to hear from another mum that the hearing aids help. I hope they do Zack some good.

I want to alleviate the fear of death

The other day I caught up with the last Season of This is Us. It's been running for a while and is the story of three children and the o...