Posts mit dem Label Therapie? werden angezeigt. Alle Posts anzeigen
Posts mit dem Label Therapie? werden angezeigt. Alle Posts anzeigen

Montag, 6. Oktober 2008

Get it Down: 31 for 21 - Day 6


This one`s about therapy!


If you are having a baby with down syndrome, the first thing you will hear is "you are going to spend soooo much time with therapy."

Well, in our case we had a lovely lady doing the physical therapy one time per week. There are two ways of exercises and therapy, one is called Bobath and is more about playing, the other one is called Vojta and is more likely exercises. We started with Bobath, turned then to Vojta and went back to Bobath again at that point where I couldn`t stand it to hear Mia cry all the time. It was not because she was hurt, more then she just didn`t like to do those exercises. This lady was beautiful. She told me a lot, not only about physical therapy but more about the things in front of me, and the most important thing: It`s about the quality.

It`s not about WHEN Mia is going to talk, walk or whatever, it`s about HOW she does it. If it takes a little bit longer until she does her first steps, than it is ok! We work with her that her first step is done when everything else is balanced and she is just ready. Everything slow and steady. And Mia was doing great. When we did Bobath exercises she really liked it when I praised her! She had really fun with it.

We went to see a speech therapist, but only once. We wanted to start with that when Mia was 6 months old but then had to go to hospital. I assume we would have had an appointment every 2 weeks or so.

We were also on a waiting list for early development, which would have been once a week at home.

If you want to count in the cardiological checkups, those were every 3 months.

You see, we had a lot of time for a "normal" baby day. Like going to a PEKiP-group which means Prague programme for parents and children. Mia was very welcome there and felt comfy.
Mia wurde im Juli 2007 geboren. Der nach 2 Tagen geäußerte Verdacht eines Chromosomendefektes bestätigte sich nach einer Woche: Mia hat das 21. Chromosom dreimal, Trisomie 21, bekannt als Down-Syndrom. Mit diesem Blog wollten wir alle Interessierten ursprünglich einladen, an Mias Entwicklung und wie sie die Welt entdeckte, teilzunehmen.

Mia verstarb am 24.04.2008 um 22.35h -nach 7-wöchigem Krankenhaus-aufenthalt- an den Folgen einer pulmonalen Hypertonie (Lungenhochdruck), wahrscheinlich verursacht durch ihren angeborenen Herzfehler, ein großer ASD II. Sie wurde nur 9,5 Monate alt. Mia`s letzte Reise kann man hier direkt nachlesen.

Auch wenn Mia nicht mehr hier ist, ist sie immer in unseren Herzen. Dieses blog bleibt solange bestehen, wie wir meinen, dass es informieren und helfen kann. Viel zu viele Menschen haben ein völlig falsches oder gar kein Bild von Menschen mit Down Syndrom. Das wollen wir ändern, so wie Mia es uns gelehrt hat.

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