Friday, May 25, 2012

Getting closer...

We found out today that Christian has cleared the Medical Review Board at Texas Children's Hospital and is getting close to full approval to go on the transplant list.

There are several logistical items to work out and a post-transplant treatment protocol that Dr S needs to complete before he can officially be "on the list".

Things that need to be worked out include emergency transportation to TCH, arrangements for the family for the immediate surgery, arrangements for a 2-3 month stay in Houston following surgery, follow-up visits, etc. And that is before we get to anything having to do with his treatment protocol (ie, med schedules, testing schedules, etc).

Things look like they will start moving quickly now until formal approval and then.....we wait.

Already having been in end stage renal disease for many years, we believe that Christian could be rather high up on the transplant list once he's there. What an exciting time.

Take care,

Kiki's Dad

Monday, May 14, 2012

6 Month Milestone for Soliris

Well today is a pretty special day. Today marks the 6 month anniversary that Christian has been on his new miracle drug, Soliris.

We have been going to Houston every other week for the infusions and have experienced no setbacks and no side-effects.

Workups for to be placed on the transplant list are ongoing and we expect an announcement in the coming weeks on that front. This truly is a miracle time in the lifelong struggle Christian has fought against this devastating disease.

To look back and see where we were vs where we are today - on the cusp of a transplant and all of the benefits Christian can realize by getting it at this time - it is pretty amazing.

Thanks for all of your kind thoughts and prayers.

Take care,

Kiki's Dad

Wednesday, May 2, 2012

Great time at Zumba!

Well a big THANK YOU to all who helped make the Zumba fundraiser a success. We had a great time and raised over $1,500.00. Special thanks to Ginger Morel for the hard work and initiative to get things rolling.