Triple ⁂Aug 1, 2024
My 18 months old daughter, slowly in remission from her stem cell transplant of last October, just mastered crawling on her four legs and I think she desserves at least a gold medal for it.
#MPS #myMPSkid #stemcelltransplant
Triple ⁂Feb 2, 2024
One thing you’re somewhat prepared for when having to take care of a immune-suppressed family member is them being easily sick. Catching bacterias and viruses more easily. But one first surprise is that for instance my kid caught a norovirus 2 months ago and won’t just get rid of it as long as she is immune-suppressed. The symptoms come and go, and it’s never really as bad as the first days of the infection.
#myMPSkid
Triple ⁂Jan 2, 2024
The pharmacy employee (or boss?) of my newly regular pharmacy got a special place in my heart and in heaven for giving me some medicament I was short on even without a prescription, allowing me to bring it the next week. I didn't even have to ask, she offered to do it as soon as I said I was maybe short on the said medicament, and she wanted to avoid me (and my partner) some unnecessary stress during the holiday. Such a gem.
#myMPSkid
Triple ⁂Dec 9, 2023
One thing that I was not expecting to do, specially on an immune-suppressed baby, is putting an infusion line to the said baby every evening by myself at home after only a one hour training. This would definitely be not legal in France.
#myMPSkid
Triple ⁂Nov 20, 2023

One thing that has highly surprised me about the German health system is how health insurances (the HKK in our case) might reimburse expenses that they are not legally or contractually bound to reimburse. It already happened once or twice to us, for sums in the hundreds or Euros.

#myMPSkid #GermanHealthSystem #DeutschKrankenKasse

Triple ⁂Nov 18, 2023
I‘m in this, I guess, very rare situation where doctors are happy when my already a bit underweighted baby loses some more weight. (She needed to get rid of some water retention)
#myMPSkid
Triple ⁂Nov 3, 2023
A gastric sonde is something surprisingly straightforward and undramatic to use.
#myMPSkid
Triple ⁂Nov 2, 2023
A weird habit that I took (and my partner too) when rocking our baby to sleep is keeping an eye on the monitor and trying to guess when is a good time to lay her in bed by her heart frequency.
#myMPSkid
Show threadPatric KingOct 9, 2023

@triple we have a set day every single week that neither of us is allowed to be away from home or taking care of Mom

it helps, a lot—both the rule and the structure #myMPSkid

Triple ⁂Sep 29, 2023

So, as mentioned in a a precedent message, in parallel with the type stuff, I will start using this account to post more personal content, and especially regarding the situations brought into my life by having a child diagnosed with an orphan disease called mucopolysaccharidosis of Type 1 (MPS1), or Hurler-Scheie Syndrome.

I will use the hashtag #myMPSkid that you can mute following the instructions on this page:
https://docs.joinmastodon.org/user/moderating/#filters

#mucopolysaccharidosis #HurlerScheie

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