Mental Relaxation

Hi everyone,

After a very stressfull period, people always tell you to relax. This is of course easier said (by them) than done (by us).
Something we're having difficulty adjusting too is other people organizing our life for us, which seems necessary to them but is very intrusive to us - so their well meaning advice does not always help.
That does not mean we don't listen at all to this advice, so Louise has upped her work out schedule to three times a week, and I am trying to reserve some time for my hobby, cooking.
After all that exercising Louise is hungry, and so I am ready with some, hopefully, very nice food which we then sit together and enjoy.

Louise refuses to be photographed during her excercising!!! However, we have got some pictures of some of our dinners for you. First this tomato creation, with a picture of what it is supposed to look like behind it.


And a nice fig and almond cake, thanks to zen can cook.


Served with a glas Pedro Ximinez Sherry. It was open, so we had to drink it.... At least that is my excuse and I am sticking to it.


And our wedding anniversary diner, which we starting eating before remembering to take a picture. It just smelled too good. We went with an Italian theme and Louise seemed to like it a lot!
We both plan to do some more things, (joining a choir for Louise, Aikido for me) but finding time is difficult. Visiting or seeing friends is always de-stressing as well, but we don't always have the energy.
It is possible us to hire a bit more care for Noah, but having a stranger in the house does not make it easier to relax. It's a really tough choice, sleep or privacy! You'd think we'd be used to it by now, but I don't think we ever completely will. Also, even the nurses need a bit of supervision (maybe they don't need it, but we like to check anyway. "Control-freaks-are-us"!). Plus the nurses need to be updated on the latest developments which costs us energy trying to remember everything.



On to the stuff that keeps us stressed.... and some stuff we're doing about it.

On our insistence all Noah's regular carers had a big overview meeting, to get everyone on the same plan and informed. This was a good step, as it cleared up a few things, and helped the caretakers (physio, nurses, etc.) communicate directly to one another. This means that we don't have to remember everything and pass it on between them.
A few more things came up in the meeting, one of them being a small worry from the nurses that Noah is growing very well. This may sound a bit weird, but they worry about not being able to carry him upstairs. Thus the subject of moving is back on our plate.... So much about de-stressing! We are looking into improving the stairs as they are quite slippery, but we don't know if that is enough.

After the visit to the KNO doctor (ear-nose-throat), and the decision that he needed a bigger canule we needed to wait about two weeks before it actually happened. That meant putting up with Noah looking like this quite often:

Not our favourite look, plus he was back on oxygen support and longer periods on his breathing machine. Since Friday he seems much improved now with his bigger size canule. He no longer needs oxygen (we're back to how good it was a month and a half ago), and he seems to sleep less. We hope to start weaning him off his machine as well, but lets first see how he does for a week.
About the sleeping: he now sleep on his tummy sometimes, although we don't know how he gets there, as he doesn't turn over when we are watching.
Anyway the results are quite fun to see, with the added bonus that he sleeps quite peacefully on his tummy and doesn't wake up during the night so much.



Another ongoing concern is his tummy, and how much air he traps within his bowels. His bowels are getting stretched out of shape with all of the air being trapped inside. I asked my uncle Jan for independent advice, since he is a pediatrician. He had some good ideas, and he talked to the Sophia Rotterdam hospital for more information. He then explained it all to us, so we have a bit better understanding of what is going on. In short the doctors think that Noah stomach has rotated along a vertical axis, and is not in a completely stable position.
This is not a well known disorder so they are unsure what exactly caused it, and how it influences his digestion. They think it can be anchored, in a position that causes hopefully no further problems. The problem is operating in this very sensitive area. Noah is just developing his muscles, and his breathing is obviously still not equal to a normal child.
We are still weaning Noah off his corset, but it is still very helpful when he is tired or full of wind, so he's not completely free yet. The corset helps him to have core muscle stability and something to push against to get rid of the wind. He must be completely independent of his corset before any operation, as it will be impossible to wear with stitches from the operation.

Last but not least, Noah is still not eating. One of the main reasons we suspect is that his canine teeth are now showing up. The first molars are all four through, but not completely. He seems to be a bit more interested in bringing stuff towards his mouth but he isn't chewing on his toys yet.
We are also still waiting for advice on his new food, so he is still on his milk. Since all the blood tests on vitamins and minerals came back okay, we are not too worried, but it would be nice to get this sorted.

We will have to go to the Sophia soon for a 24 hour observation period, in which we will get a private room, so all the doctors can visit and examine Noah. I will take care of Noah for that day, and sleep with him. We hope that a lot of our questions will be answered, but it will probably take some time for the doctors to process the results of all the investigations.

So a lot of work, and as usual a lot of question still open.

One last thing we both like to do is read, and we stumbled across these little quotes for you:

“The best thing about the future is that it comes only one day at a time.” Abraham Lincoln

“We have normality. I repeat, we have normality. Anything you still can't cope with is therefore your own problem.” Douglas Adams

“He felt that his whole life was some kind of dream and he sometimes wondered whose it was and whether they were enjoying it.” Douglas Adams

We hope to update you soon with some pictures of Noah, so see you soon!

Thijs