Sarah at Ironwoods Park 10-2016

Sarah at Ironwoods Park 10-2016

Saturday, July 5, 2014

7-5-14 Update on Sarah

The month of June was crazy with Jason and I renewing our vows on the 7th, and then taking a cruise and being gone for 9 days.  I feel like just now I am starting to recover from it all.  Anyway, obviously I am behind on my blog posts. 

Sarah has now had a total of 17 infusions, and is due for her next one on Wednesday.  She is currently receiving 12g in 60mL of fluid every other week.  I believe that for now, this is her "therapeutic dose".  It took a little while to get her dose figured out.  They started her at a certain dose because of her size, but it is not set in stone.  She started at 6g in 30mL bi-weekly in November, and we have upped it a few times until the point that she wasn't getting sick at all anymore.  Since being on this dose (almost 2 months), she has not gotten sick at all!  It is amazing.  And the infusions don't phase her at all anymore.  Her body absorbs it well, and she really isn't even sore anymore afterwards.  We are SO thankful that this has made such a huge difference for her (and for Anna too!).  And we are also thankful for everyone that continues to pray for Sarah.  We know that the prayers are the reason things are going so well.

Also, we did finally meet the new visual therapist.  Sarah has had 3 sessions with her, and has her next progress evaluation with the eye doctor on Monday.  This visual therapist thinks she is doing really well, but we will see what the eye doctor says.

I am posting some pictures of Sarah from our vow renewal.  She was a flower girl, and she also sang a beautiful song with her brother for us!

The video kids singing
 
 
 
Sarah and her Daddy dancing


She had licked him

All of us
 
The kids


 
 Our whole "wedding party" - bridesmaids, groomsmen, flower girls and ring bearer


 
Pic of Sarah and Zach singing
 

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