IOGA

International Organization of Glutaric Acidemia

Annual Golf Outing

Calendar of Events

There are no events at this time
Joseph PDF Print E-mail

We are in our second year of dealing with Joseph's GA1.

We are indifferent about having another child and are always trying to find out more information about testins and all that, but we always come to the conclusion that any child of ours will carry on that GA1.

Joseph is doing fine overall. Last year was a challenge because of the constant visits to the hospitals, doing all the tests (CT, blood tests, etc.). The nurses and doctors always have a hard time finding a site to poke for blood on Joseph and I always cry when the come to do it, but eventually I had to toughen up for Joseph and not cry.

He is doing PT, OT and speech therapy now at home with our providers coming to do them at our home. It is very convenient and it helps a lot. Sometimes it gets annoying having people in our homes everyday but its all for him...thats what we all have to keep thinking and saying to ourselves.

His care has become easier now that we've gotten a routine. Before, we'd always be stressing out or forgetting something, especially when we travel. He enjoys the outdoors and is very playful. He smiles and laughs alot and like being read to. He talks alot to us and everyone he knows. He's funny sometimes because we'll be quiet and all of the sudden he'll crack up without knowing what he's laughing about.

As of now, he gets check ups by the specialists in Albuquerque, NM. every so few months and its been a real relief because of the costs of traveling.

We have learned to adjust to his life and care and are finding time to read up on the latest info on GA1.

It is a relief to know we're not alone.

Kynra & Dewayne

Parents of Joseph

 
Joomla 1.5 Templates by Joomlashack