July 5th, 2011. Day +116   5 comments

Sorry for the late post.  Time really flies when you are having fun!  Things have been going pretty darn good at home.  Charlotte has been enjoying the weather and playing outside when she gets the chance.  She is still at very high risk for sunburn so we have a little bit of a struggle every time we try to lather her up with sunscreen but we get through it.  More acting like a normal three year old I’m afraid, but we will take it.

Amy and her girls at the parade.

We had a wonderful holiday weekend.  We were able to take Charlotte to the parade in Columbus yesterday afternoon because George and Rita J. were so gracious to give us a spot in their yard away from the crowds.  Thank you!  We also watched the fireworks from an empty parking lot and both of the girls had a fun time with that.

Grandma and Grandpa E watching fireworks

Today was clinic day, and Dr DeSantes seemed pleased with how CJ looked.  She has been off the blood pressure medicine for a week, with no abnormal numbers (we still took her pressure three times a day) so Dr DeSantes said we can quit the blood pressure readings altogether!  That will be a good change for all of us.  We also lowered her dose of cyclosporine this week.  We will have this new dose for another four weeks, then hopefully lower it again.  We lowered her magnesium supplement today as well, but her mag levels continue to be low so we will have to watch those.

We are also on track to have clinic days every two weeks.  Her hemoglobin level was still down around 10.3, but the rest of her counts were quite normal.  We hope the doctors are not too concerned and she stays on the right track to recovery.

 

Posted July 5, 2011 by L. Elske in Uncategorized

5 responses to “July 5th, 2011. Day +116

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  1. Yea! SO happy you could do all the “4th of July things” you love to do! Truly a day for celebrating all around! Sending our love from Sun Prairie. 🙂 🙂 🙂 🙂

  2. I’m so happy to see those smiles and hear about a wonderful week. I’m glad the 4th included the parade and fireworks for all of you. It’s good to have you back to going to clinic every other week. Keep enjoying summer and each other. Prayers continue coming your way.

    Joan and Bob Sennhenn

    Joan & Bob Sennhenn
  3. How wonderful to see the Lon and Amy Elske familiy being able to act like a normal family again. Charlotte looks wonderful can’t believe how the swelling in her face has gone away and Molly is getting to be such a big girl. Everything you have gone through and especially Charlotte has been worth it. You have done a great job and still have a few months and anxious moments ahead of you …. but hopefully they will only be small hills and not mountains to climb. Looking forward to the time when we can all be together again and celebrate the new lifle. Much love, Uncle Jim and Aunt Judy

    Uncle Jim and Aunt Judy
  4. The parade and fireworks! Who could ask for a better 4th of July celebration than having your best girls by your side,loving you!

  5. What a happy pictures with Grandparents and Mom and kids. Glad you are doing well.

    Joe & Sue Kaminski

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