As they say, no news is good news.  Not much exciting has been going on lately.  Grace is eating a fairly regular diet at meals, which has always been pretty small.  Yesterday, she drank a lot, which hasn't been common for her, so we give her 600ml of water via her NG tube, 50ml every hour throughout the day.  She gets 2 bottles of baby formula 50ml/hour throughout the day, which means she doesn't have to be on the pump at night, which is nice for everyone involved.

We thought she had c-diff last week, as the symptoms returned shortly after getting off the antibiotic, but the test came back negative, and her symptoms have mostly resolved, so perhaps it was just related to a switch from magnesium sulfate to magnesim oxide for a few days due to it being impossible to get from a pharmacy within an hour of us.  Heather had to crush up the pills and make a solution herself, which you would have thought a pharmacy could do...  But, she is back on her regular magnesium sulfate now, and we just have to remember to schedule and pickup a few medications at the Dana Farber pharmacy when we go for weekly clinic visits.

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Posted by Jon Daley on April 23, 2024, 6:40 pm | Read 277 times | Comments (10)
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Grace sings this little Happy song at least once a day. She sang it in the hallway as we were leaving the apartment to go home. I have not yet managed to get a video of her singing it.
Everybody is doing better now that we're all together.
It's good to be home; it's good to not have to try to get a bunch of stuff done before leaving again. We are still adjusting to the routine, and still unpacking, but the overall feeling is good.
There is a lot of laughter in the house with Grace around. She is such a blessing.
Please continue to pray for her complete healing and protection from germs.
Posted by Heather Daley on April 10, 2024, 9:59 pm | Read 214 times | Comments (2)
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We are headed home on Monday!

 

Grace will still have at least one clinic visit a week and depending on the labs that week, might have a second appointment, but we decided that for the sake of our entire family, we need to be home and it is worth driving back and forth as needed.

At some point, we'll transition to some appointments at Dartmouth hospital and some at Dana Farber.

We need to get the prescriptions transferred to Hillsboro and the CVS in Boston isn't making that easy.

We are thankful that Grace has been less nauseous and we've been able to reduce her formula intake down to 16 ounces per day and she is eating more on her own and has steadily been gaining weight.

We need to figure out what "isolation" means for Grace and how to keep her from getting sick, but also not living in a complete bubble.

Her next milestone is the 3 month mark, where if things continue, her transplant will be considered to be successful, though there is still the possibility for graft vs host disease until she is off the immunosuppressant drugs. 

 

Posted by Jon Daley on April 6, 2024, 4:17 am | Read 929 times | Comments (12)
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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 202 times | Comments (4)
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