Re: Josie LiNI update - August catchup

For a quick August update   . . . . 

Josie and I will head up to Stanford tomorrow for a quick check up on Monday.  Josie is doing pretty well, but we have changed a few things around so it seems prudent to have the specialist take a look.

Overall Josie is doing well.  Everyone gets more sleep with the central line and pump setup.  We still have times where we really struggle with the bandaging playing havoc with her sensitive skin, but overall we can manage it better and Josie has told me she likes this better. Unfortunately Ms. Josie has already managed to pull her central line out a bit.  That is not good, so we have to keep a very close eye on her.  For some reason Josie seems to want to army crawl every now and then.   That is not really compatible with a central line.

In other news everyone went back to school last week.  So far everyone is having a good time, but both girls are a bit tired at the end of the day.

I'll update the blog after we see the Doc Monday.

Thanks for the prayers and good thoughts.

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Prayer and thoughts please for:

• Healing! for heart and lungs!! - Josie looks and feels so good it is hard to know how she is actually doing on the inside.
• The central line to stay clean and infection free.  Summer is tougher because Josie sweats and it gets damp under the bandages.  Not good.
• Mom and Dads learning curve.  Right now equipment management is pretty time consuming.
• Healing for Josie's poor abused skin too. Right now the Doctors don't think we can do anything about all the scaring she has from using the SubQ to deliver her medication, but I'd like to prove them wrong.
• Wisdom!  There is a oral version of the medication we use the IV for - and they are preparing for pediatric trials right now!  We are talking and praying about whether Josie would be a good candidate for those trials.  It would be an amazing quality of life improvement.
• Related request - I am working on teaching Josie to swallow pills.  Tough going for her (JJ got it first time), but she has to be able to do that for the drug trial, plus it would make other medication management easier too . . .

And if you please - prayers for Josie's little friend Naya too.  She has now been in the hospital 5 months healing from the aftermath of a heart correction that she did not adjust well too.

For more about JJ and Josie  . . . 

http://lookingeastandwest.blogspot.com/

  

Thanks for all the kind thoughts, prayers and support