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środa, 26 grudnia 2007
Merry Christmas!!!!
10:29, gofer73
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poniedziałek, 24 grudnia 2007
I am sitting and doing nothing :)

 

23:10, gofer73
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piątek, 14 września 2007
September update
Szymon is doing well. He is growing, putting on weight. He has 4 little white teeth. He babbles, smiles and actively plays with his favorite toys.
 
Last week we have started speech therapy with a new teacher. In a  meetings with therapist Szymon will also learn aac (alternative approach communication) that includes computer techniques support in day to day communication.
In first lesson Precel has learnt how to use a switch - sensitive button that is linked to a computer mice which in fact allows disabled person to use computer applications. With a switch Szymon played a computer game called "little duck" for the first time in his life!
 
 
And we have a new bed! It is huge, and adjusted to Szymon's special needs: 4 wheel will transport him from bedroom to the living room, remote controlled mattress will lift him in a correct position and bed's size will allow all medical equipment to be next to Szymon.
And...hopefully in three weeks we are moving to a new apartment. We will live in greener part of our city in a building adjusted to disabled people needs. And what is the most important thing: we will have 20 minutes walk to my Sis and Maksym's and Szymon's Grandma house!
10:28, gofer73
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środa, 25 lipca 2007
Szymon babbles
One of our worst fears after Szymon was trached was that he will not be able to talk. Although doctors tried to convince us that Szymon will talk, we could not find any trached kids that can do this. It was very frustrating, especially when speech therapists told us that it is very unlikely to talk when baby was trached in such young age (13 months) and did not managed to develop any speech pattern before the surgery.
But....day after day Precel started to give sounds. First was "a kiss" sound when he was hungry. Then slowly he started his "baby talk" (my SMA free nephew Hubert that is 12 months does exactly the same).
Now Precel can tell "Mama" (that means "Mom" of course) and "Baba" ("Grandma"). And of course his babbling is still in progress :)
 
It is hard to get used to a "talking" Precel. But our hearts are growing while we hear him.
11:58, gofer73
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poniedziałek, 16 lipca 2007
TheraTogs
We found TheraTogs system on the Kyle's website. We liked it a lot and we thought it would be useful for Szymon to stabilize his spine while sitting.
We got to know that TheraTogs is also called "second skin" and in fact helps physiotherapist to optimize his efforts to keep child's body in good shape by improving stability and body awareness. It also improves his posture and movement skills.
It looked promising and seemed to have a great potential for such kids like ours. We decided to order it and bring it to Poland.  We waited for two months and finally here it is :)
 
And it really does work. Our therapists are astonished and amazed with the TheraTogs effect on Szymon: he can sit with far less support he used to, in the TheraTogs his body is stable and his spine looks safe. Just look:
I am sitting!!!!
Now I can learn how to drive my stroller:
13:04, gofer73
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wtorek, 26 czerwca 2007
VPA
For the last 6 weeks Szymon is taking valproic acid (VPA).
VPA is supposed to stop the disease, as it helps SMN2 gene to produce protein that is missing in Szymek's body. Although it is not proven (still clinical testing) VPA is a potential remedy for the SMA. And we do see the effects. Last time Szymon has learnt how to turn his head from the left to right side. His hands became more active, yesterday I have spoted him trying to put his thumb into mouth.
He is also trying to talk. He opens his mouth and gives different sounds.
Last tuesday we went to the doctor to do some blood tests to see whether VPA is not doing any harm to his liver. The blood test are OK so now we can continue with the valproic acid.
10:53, gofer73
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Update :)

Here is the first update :)

10:48, gofer73
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czwartek, 21 czerwca 2007
Introduction
We decided to start this diary in order to let our English-speaking friends what's new in our family :).
So many English speaking people DO CARE about our son and is interested how is he doing: Uncle George, Lisa, Ginny and so many more....This blog is for you :)
We promise to keep you updated as often as we can. You have to apologize our English that is not our native language, and we may do some mistakes.
Please feel free to leave your comments, by simply clicking on "Komentarze" and then write your login (nickname) and when the comment is ready press "Zapisz" (save) button.
15:49, gofer73
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