We were so relieved and happy to have Jon and Grace with us for Family Camp.

Daley summer life has been super full as usual.  Jon got special permission for Grace to ride the Summerfest carousel all by herself (and he wiped the horse down with hospital disinfectant wipes.)

We went to Connecticut to see extended family (big family pictures have yet to be uploaded from our "real" camera.)  Grace is not allowed to get her central line wet, so at the suggestion of a nurse, we wrapped her up in plastic wrap so that she could walk the beach and step in the shallow water. Here she is, all wrapped up, with her bathing suit on top. (Sweet pics of her and Jon on the beach are on the other camera.)

Overall, she is doing well.  Her numbers are looking good.  However, we are still concerned with diaper contents.  What is the right level of softness?  What indicates a problem and what is normal?  There is such a range of normal.  What is her new normal?  Bananas affect it; summer fruit affects it.  Medications affect it.  We are keeping her off dairy for now to eliminate that aspect of the question.

Give thanks to God for her progress and pray that we can have wisdom to know when to intervene.  She also needs to eat and drink more by mouth.  Sometimes, I am impressed by the amount she consumes, and sometimes she still doesn't eat much.

Faith's back, last I heard, was doing ok at Csehy (music camp.)  She still has healing to do and appointments to go to, and soccer to play! Her team is working on getting special jerseys in the orange color of Leukemia awareness and they are working on a plan to sell Victory tshirts at soccer games.  They are inspired by Faith's dedication and sacrifice and wanted to do something for her and Grace and us!

Posted by Heather Daley on July 26, 2024, 4:30 pm | Read 1261 times
Category Grace: [first] [previous] [next] [newest]
Comments

Thank you for the update. Prayers continue for Grace and Faith and all the Daleys. I pray that Grace with graduate soon to eating more.

Posted by Nancy Shee on July 26, 2024, 5:34 pm

SOoo happy to hear you all got to be together for camp - and the pictures are delightful. You continue in our prayers.

Posted by Sharon Gamble on July 26, 2024, 7:35 pm

Grateful for this update, and rejoicing with you over so many answers to so many prayers. Looking forward to reading more books with Grace soon! 

Posted by Pam on July 26, 2024, 9:37 pm

Aww, so special! <3

Posted by Heidi on July 27, 2024, 7:55 am

So proud of Faith, Grace as well as every one of the Daleys for your steadfast faith and devotion to each other. Such fortitude! and I'm very happy with the good news. Such an amazing team - You are all an inspiration! Thanks again for sharing this journey. I have learned so much and know this information will help others when faced with extreme challenges.xxx

Posted by Laurie on July 28, 2024, 2:20 pm

Love the pictures, and of course the smiles and good news......

You are all super humans!

So glad God has allowed our steps to cross!

Posted by Denise on July 30, 2024, 4:07 pm

Love the family picturep All the kids are growing up so fast.

Posted by Rujiraumporn family on August 22, 2024, 11:16 am
Add Comment
Add comment
E-mail me when comments occur on this article

culpable-adaptable