April 29th, 2011. Day +49   2 comments


We have been home for three weeks today.  Things have been so awesome that I hate the idea that I am going back to work on Monday!  Charlotte is just great!  She has been keeping up on her eating and drinking and has been more active between all of her snacking.  In the last three days,  Amy and I

Garage Saling!

both have seen that little twinkle come back in her eye-she has been very happy and playful and even joking around at times.  Potty training still has its ups and downs.  Yesterday we had no luck on the potty chair and today she was very happy to go twice for us.  There is still work to be done there but she continues to cooperate and we will continue to treat her like a normal almost three year old!

We had the home health nurse come today and change her PICC dressing and take another sample of blood to test her magnesium and phosphate levels since they have been changed to oral instead of IV.  CJ took a short nap and then we headed to Sun Prairie to briefly hit some garage sales.  We only made it to a few but Charlotte did a little bit of walking herself and picked out a pair of purple shoes for Molly.

The clinic called back this afternoon to let us know that her phosphate level was just fine but her magnesium was a little low so she will have to take that tablet three times a day instead of two.  On Tuesday the NP expected we may need to make that change because she prescribed enough pills for three a day but said we should try two first…so that doesn’t worry us at all.  We may not find out until Tuesday,  but we think Charlotte might be getting the PICC line removed.  Tuesday she will have a little longer clinic visit.  She will have to have her monthly IV of Pentamidine and IVIG so she will be be hooked up to tubies for a few hours and hopefully the doctors will have a chance to see her while she is just there hanging out so she can get back to having fun full time.

Posted April 29, 2011 by L. Elske in Uncategorized

2 responses to “April 29th, 2011. Day +49

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  1. We have been following your blog since it started. Charlotte as well as her parents and grandparents are such an inspiration and admiration to everyone. We have grandchildren and it’s hard to imagine going through what you have had to endure but you have done everything right. We continue to pray for you and are so happy that all good things have fallen into place.

    Tom & Kay Lettau

    Tom & Kay Lettau
  2. So good to see you guys having some fun with cooking out and doing the garage sales. And it’s great to see Charlotte being able to be out and about right there with you. YEAH for “normal” times and just everyday kind of stuff!! Love and hugs to all …

    Aunt Cyndee & Uncle Earl

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