We went back to the clinic in the late morning after Grace threw up her NG tube.  She did manage to take her meds by mouth that morning, but she doesn't really like it.  They had tested her stool when she had so much diarrhea at her appointment the day before and it did come back positive for C. diff.  So she is on antibiotics for that now, but her symptoms are better. We are still struggling to find the balance between real food and formula feeds, and getting enough fluids into her.  Some days she eats and drinks a lot.  Some days not very much.

Jeremiah was with us for a few days, and he and Grace had lots of fun silly times together.  On Friday, Jon drove with Jeremiah up to Maine for the 2024 Daley vacation.  That night, we did a video call and said hi to people and Faith gave us a tour of the house.  Grace was very sleepy, so she didn't interact much.  Saturday, I took her for a walk and found a nice park.  It was also a beautiful day.  That afternoon, Jon called to say that Faith's phone had caught on her pocket on the way out as she was going to take a picture of them on the WIggly Bridge.  Her phone splashed into the water and was irretrieveable.  But the rest of the Daley vacation went smoothly.  Jonathan said it was the most stress-free vacation in years and it was good.

Grace has started being aware of and interested in the baby in my tummy. She likes to feel my belly for feet and Saturday she told me that she had a baby in her tummy!

Jon came back to Boston Saturday night.  We switched off Easter services the next morning.  I went to Park Street at 9am and it was glorious!  Then I met Jon at the hospital to switch off and he played guitar for the service there.

After Grace's dressing change (which is definitely nice to do with two people) I headed up to Maine.  It was great to hang out with the kids again and some of the extended family. The cousins played hide and seek pretty much the whole time they were at the house.  It was a great big old house for that.

I drove to Hillsboro after the Daley vacation. Again, it was good to be with the kids and I long for the time we can be all together again. I'm definitely quite physically tired.  When some people came over on Tuesday to help they said I sure looked tired and made sure I went back upstairs to take a nap.

Joy and I came back to Boston today, and arrived just in time to pick Jon and Grace up from the clinic.   Grace's electrolytes are not settled and so they want us to come into clinic twice a week.  Her head doctor is away for a few days, so we have not gotten an official answer yet about going home.  We think she's stable enough that we can be further away, and think it is worth driving into Boston twice a week (once for each of us) to have our whole family together at home.  But we don't have official approval yet.

At Jon's prompting, Grace announced to us that the baby in her tummy is a boy.  Then she and Joy had a hilarious argument about who is in my tummy - Grace, "boy!" Joy, "girl!" etc. for quite a long time.  Even when Jon said that was enough talking about it, Grace pointed at my tummy and made knowing eyes at Joy.  It was so funny!

Hopefully tomorrow is a laid-back day for us. Please pray that Grace can consistently eat a lot of calories by mouth and also fluids, so that her electrolytes are balanced and she can get off the NG tube soon.  Also that we can go home!  And get sufficient rest.  And for the kids at home who really miss their parents and sister.

Posted by Heather Daley on April 3, 2024, 8:44 pm | Read 201 times
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Praying for Grace and the baby in tummies and for all of you dOO

Posted by Nancy Shee on April 3, 2024, 10:11 pm

Thanks for the update! Will be praying for these requests and that you can come home soon!!

Posted by Heidi on April 4, 2024, 6:53 am

All of you are an amazing family, in my almost 70 years I have not come across any other family that could handle a quarter of what is on your plate....I am blessed to know it is our God who has His arms under you at all times, and He is in control....Love to all of you, I'm always praying

Posted by Denise on April 4, 2024, 10:19 am

Lots of prayers for Grace's tummy to quiet down and for you and your tummy to get some rest...xxoo

Posted by Laurie on April 4, 2024, 4:58 pm
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