Heading home after this weeks bathing at the therapy pool at the hospital. The water is 34 degrees celsius so it is real nice and Elliot is a real water animal, he spends more time under the surface than above. This week it is time to take the walking test. The past month Elliot has been in a pretty good shape, hopefully the test will confirm that. Today ends winter in Stockholm if the weather forecasts are correct.
I am so glad to hear you are doing well ! Wish you a happy springtime !
ReplyDeletePatrik,
ReplyDeleteMy name is Christine and I work in international services for the PH association in the US. One of our staff members found your blog this morning and I was so pleased to learn more about Elliot and your family, as well as about resources in Sweden that we hadn't known existed. Emma (who told me about your blog) also shared the link through our Facebook page today. I would love to talk more with you! You can contact me at Christine@PHAssociation.org if you are interested. In the meantime, all my best to you, your wife, and your little ones.
Hi
ReplyDeleteMy name is Carmen Miller and my son (Tylor), now 6 years of age was diagnosed with PPH six months after his birth in 2004. We are living in South Africa and knowledge or interest in the decease is far less than it is internationally.
There is only one other child in South Africa, of whom i know suffers from the decease, she however has an underlying cause to her PH. Everytime i hear of another child suffering from this decease my heart breaks all over again.
I have briefly read through a couple of your blogs and i am quiet amazed and the constant checks which are carried out on Elliot. No doctor has ever done a walking test or anything of the like on my son.... You can say we are walking blind over here, not really knowing what the true status and progression of Tylor's decease is.
Elliot seems like a real little fighter and i wish him well on his journey ....
kind regards
Carmen and Tylor
Hi Christine and Carmen,
ReplyDeleteI haven't checked out the blogg for quite a while, that's the reason why I haven't answered. Christine: I'd love to get in contact with you, I'll send you a mail. Carmen: I think we're quite fortunate, the walking tests are quite new, at the hospital that Elliot are connected to,they started to do walking tests with children last year. Still it feels like we as well are walking blind.
Patrik