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  • Writer's pictureCasper de Leuw

In 5 weeks we're going to Vienna!



Today I decided to push a bit and put Angele in the wheelchair for the first time. Getting her in was quite ok, driving her around in our apartment smooth but she got tired real quick. So I decided to push a bit more, and tell all of you what is going to happen in 5 weeks. In 5 weeks we are going to Vienna!





Granted, I could have made her say anything, that's how tired she was. Tomorrow we're flying to Mars? No, that's far fetched. Vienna is in reach though!

The moment I put her back in bed she immediately got a fit; it started literally while lifting her back to bed. This I expected though, since it usually happens as well after I put her back in bed after she is doing a number 2 on the commode.

So she sat in her wheelchair, I drove her around. Just for a few minutes, but it is a start. I will do it again tomorrow if she's up for it!

She has good days and bad days. Days with several fits, days without. But to give an idea, an average day is as follows:

7:00 - wake up for pills; nurses come to wash her

7:30 - nurse comes to replace syringe drive medication

7:45/8:00 - eat one or 2 yoghurts, maybe a toast and some fruit

Sleep

10:00-12:00 - meditate/sleep

13:00 - pills second round

13:15 - eat a brownie, or fruit, or lunch (or all of the above)

Sleep (or meditate)

15:00 or 16:00, sometimes 18:00 - eat more

19:00 pills

Meditate

Sleep


And in between there's sometimes visitors, the kids running around during the morning and evening routine, sometimes a physio or another nurse, or an annoying husband who's trying to brush her teeth. But all in all things feel stable and organized.

I had to push a bit but we changed the medication routine. By changing the doses and doing it in 2 batches instead of 4 for one of the pills, I don't need to stay awake till midnight to give her the last pills anymore. So I moved it to 7:00 - 13:00 - 19:00 which is a lot better to manage. Now the only things keeping me awake at night are our lovely monsters that want to pee, or drink, or sleep next to me, or want to go back to bed, or go into a 4am panic attack since the doll fell under the bed.


This week I tried to make some changes with regards to the children as well by trying to actively spending more time with them since I am supposedly more rested. And I have to admit, last Tuesday was a lot harder than I anticipated. Emotionally rough. Morning routine and evening routine are perfectly fine. Sometimes challenging and frustrating if they don't want to wake up or sleep but other than that fine.

But taking them out together, just the 3 of us, is rough. Our last outings together were hospital visits. The outings before were either Angele taking them somewhere while I was working, or the 4 of us going somewhere. If it was the 3 of them, I always got to see the pictures or videos at least. But now it is different. Angele can't stand looking at screens for more than 2 seconds let alone watch a video. She is too far off to really appreciate the stories of what we were doing.

It is hard to describe, but it dawned on me at that moment: nope, I don't want this. Yes, I will manage, and we will get used to it if need be, and it is ok and we will have fun, but this is supposed to be with the 4 of us!


So my goal for July is three-fold: make it fun and not painful to do nice things with Jessie and Tobias, and have Angele meditate as much as possible, and get her in and out of that wheelchair as often as I can. Ideally without fits, and with her being less and less tired.

Still taking it day by day, but also looking at it week by week. Almost 4 weeks already with her being at home. And 5 more weeks to go to roll her into that airplane to Vienna!




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