Port Placement

Happy Mothers Day!

Sebastian's port has been surgically placed. It is a small device that sits on his right side in his upper chest. This device enables the medical staff to insert IV's, etc. for up to seven days. This will be beneficial for delivering the gene therapy as well as allowing easier, more predictable access to his major veins.

The procedure itself went well and the hospital followed up with an x-ray and determined that the placement was good. After the procedure, he had a rough afternoon and evening, because the anesthesia made him sick, but he was better by that night and was discharged the next day. A day later the port was flushed out with saline and Sebastian said that he felt less pain than with a traditional IV, especially when the needle was removed.

Aside from spending a couple of days in the hospital, we have been able to meet up with some of the other families that have successfully undergone gene therapy. Dr. Aiuti took a picture of three of the children together as we were chatting in the hall way. What a sense of accomplishment he must feel knowing that two of those children are walking around without the need of Adagen and are on their way to pursuing normal lives. We can only hope and pray at this point that Sebastian will be so lucky. I value the Doctor's abilities, as well as the rest of the staff, beyond words. We understand how lucky we are to be here.

The weather in Milano at this time of year is wonderful. It is really nice to see people (especially the children) out walking, riding bikes or gathering in their local squares. I love the sense of history of downtown Milano, the food and the people. Both Lynette and myself are learning more and more Italian every day. I enjoy the language and hope to teach Sebastian as well. It would be nice for my grandfather, who is no longer with us, to know that I will be able to speak the language and so will future generations. I hope to have a proper conversation with his sister (my Great Aunt) when I return home.

Next week Sebastian will have some more tests and will stop receiving his Adagen shots. We are all very excited at the possibility of this being his last dose.