It's springtime in Stockholm and all over its green. It's really beautiful know. Since our last visit with Elliot to the hospital in February we have had a really good time. Both I and Marie have been home full time with our baby boy Olle and Elliot have been okay. When Elliot is playing and running he has to do frequent stops because his "legs are tired" as he explains it. But beside of these symptoms and that he has to take medicines three times a day we don't notice his disease. But still we worry a lot...
Our next visit to the hospital will be in late May and the routine is that he first do a condition test. He walks for 6 minutes and before and after the walk a nurse checks his pulse and saturation. Then the doctor checks his heart and lungs with ultrasound. But without catheterization it's difficult to say something about the lung pressure. The latest cat was made in December 2008 and the outcome was negative, Elliot has not responded to the medicines, but we still hope for a positive change.
During this spring I have got in contact with some other parents who have children with PAH in Sweden. But since the disease is very rare my hope with this blogg is to get in contact with parents outside Sweden.
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