July 19th, 2011. Day +130   9 comments

So far, so good.  It’s hard to believe that another week has gone by and I am again late in posting.

If you talk to Amy or me,  you will find neither of us complaining about how things are going (other than the darned heat around this joint)…Charlotte has been wonderful.  She is starting to eat a little better and once in a while she will surprise us by drinking more than usual.  Her nighttime routine is getting a little better.  She is staying asleep for more hours during the nights and she doesn’t always need us to lay in bed with her when she wakes up in the dark.  Her energy level is still very high, but with the hot weather and sun, she hasn’t been too free to play outside for more than a few minutes at a time.  She is enjoying chasing Broadway around the house, though I think that he would prefer otherwise.  As I sit here watching her play in the tub, I think back to how miserable she was when she was in the hospital and after we returned home, when it was bath time.  She is now back to her normal self-playing in the tub until the water gets cold, and the bubbles all disappear.  It usually takes a few minutes of constant reminding to get her in the mood to get out.  Words cannot describe how happy and proud I feel every day watching her grow up.  She is talking better and better.  She enjoys holding conversations, helping out around the house, and using the big girl potty chair on the toilet.  She is very loving to Molly and Broadway.  She is having lots of fun when Grandma E watches her while Amy and I are working.

We had to go to AFCH today for her monthly dose of Pentamidine so the NP stopped in to examine her.  She said CJ was looking really good.  Even though Charlotte was not too thrilled to be looked at as she was missing her nap because we were there.  But she settled down as Sharon left and waved goodbye to her.  Dr DeSantes was in a little later.  He was all smiles as he said “She looks great!”.  It was the most enthusiasm we have ever seen from him so we will take that as a good sign.  We will have another clinic appointment in another two weeks and we hope the good news continues.

Her WBC was at 4.2 today, her hemoglobin was 10.5,  ANC was 2200 and she had 311K platelets.  From what I can tell, her numbers are reflective of how she must be feeling.

Many thanks to Flashes of Hope for providing us with these terrific pictures, taken on May 24th.

Posted July 19, 2011 by L. Elske in Uncategorized

9 responses to “July 19th, 2011. Day +130

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  1. The pictures are beautiful – what a perfect family! So wonderful to continue to hear good news, it will probably cool off sooner than you want up there, altho I do feel sorry that your experiencing “florida summer”!

  2. Many, many tears of happiness this morning for such great news yesterday! We love you guys!

  3. So glad ALL IS GOING WELL. pICTURES LOOK GREAT. Kids look great.

    Joe & Sue Kaminski
  4. I’m so happy to hear things are going well! Cute pictures!

  5. Awesome photos–SOOOOOOOO good having Amy in the NESCO office twice a week!!!!!

    Cheryl Batterman
  6. What gorgeous pictures of a very special family. So glad you shared them with us. I’m so happy to hear it was a great clinic appointment with lots of encouraging words and smiles from the doctors and staff. Enjoy each other. Hopefully the heat will be over soon and you can enjoy the outdoors again. Prayers and thoughts keep coming your way.

    Joan & Bob Sennhenn
  7. Just checked in and was so happy to hear things are going well. The pictures are beautiful. Charlotte continues to be in our hearts and prayers.

  8. Great photos and great news!!! What an awesome God!!

  9. Wonderful to see the good news continues. Awesome photos of your family. We continue to keep you all in our thoughts and prayers.

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