Re: Josie LiNI update - May 2014

I was going to write a nice May update, but Mr M already did a fine job.

Here it is straight from BaBa Joe . . . We do indeed request your prayers. Somehow the different procedures and learning curves are still difficult for us all.

Dear family and friends,

Please pray for the surgeon, Dr. Sainz, who will be implanting a central line in Josie's chest on Friday. He worked with Dr. Hanley who did the 2012 heaert correction surgery.

Josie is such a trooper, but the subQ system caused so much reaction since March 2013 that there are few places left on her arms or stomach to attach. So after much prayer and communicating with other parents of kids with PH, we've decided to have her medicine delivered IV, 24/7. Josie will be sedated and that's always risky, but I believe we've assembled a great team. Kim needs a break, too and while the central line has the risk of a blood infection, the subQ sites had the nasty habit of failing. We'll be trained in clean , disinfectant procedures, but everyone says even the subQ system could have had infections but we only had one which is a testament to Kim's (and my) being super careful.

Josie has adapted to her circulatory system and Dr, Hanley's 2012 surgery gave her heart a fighting chance to last. The last e-mail I received from Stanford reminded me that the right side of her heart really worked hard before the surgery and that even after the surgery Josie might have had heart failure if a echocardiogram in March 2013 hadn't indicated the inhaled medication wasn't helping her. The last evaluation revealed some progress and the big Hope is for an oral form of the medication beginning pediatric clinical trials this summer. We have decided that Josie would apply to be a part of the clinical trial so she could eliminate all the paraphernalia .

Thank you for your prayers.


BabaJoe


One item of praise I did not send out in the "general prayer update" is that we had Josie's hearing retested (18 months later . . .). It was very encouraging. Her hearing is fine, some of the processing problems they spotted on the first test have evened out with time and work. Josie is still pretty behind in language - but the specialist feels her language development is "appropriate" - which is to say that she is making very good progress and going through all the normal steps of developing language skills, she is just still catching up.