August 16th, 2011. Day +158   8 comments

It has been just another fantastic week at home.  Charlotte and Molly have been great.  Charlotte is still acting like a completely normal three year old.  She loves playing outside, acting silly, singing, and she both is happy with and jealous of her little sister.  She has been very active and she is taking good naps and sleeping better at night.  Molly got her first tooth on Friday so she was a little grumpy because she was in pain, but she is happier already.

Charlotte had her clinic appointment in day treatment today.  We were thinking it was her last one, but found out today that she might need at least one more dose of pentamidine next month.  I was also hoping Dr DeSantes might decrease her cyclosporine today for maybe the final two weeks since she is already on such a tiny dose, but the Nurse Practitioner said that the protocol calls for CJ to be on it for another 6 weeks.  They won’t even test her immune system until she is no longer on the immuno-suppressant-so she would be on isolation for at least that much longer.  We told the NP that Dr DeSantes thought we might be off isolation by then so we planned the date for Molly’s baptism at the end of September hoping Charlotte would at least be tested by that time-and we compromised and ended up with 4 more weeks on the cyclosporine for now.  Her CBC numbers were all a little lower this week, but the doctors didn’t seem too phased.  Her WBC was 3.3, hemoglobin was 10.7, platelets 255k and she had 1820 neutrophils.  We are still sticking to bi-weekly appointments for the next month or so.

Amy and I would just like to say “Thank You” for all of the nice comments and the continued prayers.  It means a great deal to us that so many people are still following Charlotte’s story.

If there is no blog next week please don’t be alarmed.  I will be heading to Canada for the week for a fishing trip and Amy may or may not be able to figure out the website (her words not mine).



Posted August 16, 2011 by L. Elske in Uncategorized

8 responses to “August 16th, 2011. Day +158

Subscribe to comments with RSS.

  1. Can’t imagine going without a post next week but I guess it’ll be OK! It’s been great having such wonderful news and we hope you have a relaxing and fun trip fishing. I’m sure the “girls” will find plenty to entertain themselves with at home.

  2. So glad to hear everything went well at the appt! Keep up the good work!

  3. IT IS AWESOME HAVING AMY BACK AT THE NESCO OFFICE!!!! (Do you sense our appreciation?) 🙂

    Cheryl Batterman
  4. Yea, for another good clinic day! Charlotte is moving right along, becoming her “new self” every day. It’s amazing to see how far she’s come from this time last year. She is Supergirl! So glad Lon is still able to go to Canada, the annual trip just wouldn’t be the same without him. 🙂

  5. So glad you get to enjoy some time away! It is well deserved after all your family has been through. It is great to hear Charlotte continues to do so well.

  6. No blog???? Are you kidding? And you’re going to let a little thing like a fishing trip to Canada interupt things?? (Just joking, Lon!) Such wonderful news about CJ and Molly. Thanks for keeping the news coming! And have fun in Canada!

  7. Enjoy a much deserved get-a-way!

  8. Have a good time fishing. Say hi to your Dad for us. Glad to hear all is going well with Charlotte.

    Joe & Sue Kaminski

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s