We have lots of good news to report.

Grace has been improving the last couple of days.  Her abdomen measured 53.5 cm, the smallest it has been in weeks.  They have changed her cyclosporin from IV to NG (nasogastric) which is a step towards getting ready to be discharged.  The dosage for cyclosporin is changed based on regular lab draws, and the medicine absorbed changes based on the method of administration, so I imagine that is why they are changing this one to NG first.  All meds will need to be changed to NG before we can leave.

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Posted by Jon Daley on March 5, 2024, 10:54 pm | Read 175 times | Comments (3)
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Our family will be in Boston next weekend (after the father-daughter retreat at Maranatha) and we are wondering if there is anyone who would be willing to spend some time at the hospital so our whole family (minus Grace) can go out to Boda Borg and the same sushi buffet that some of us went to last week.

I think we could do dinner on Saturday night around 6:30 or Sunday around 5:30.

We are going to Boda Borg on Sunday afternoon from 12:30PM to 5:30PM or so.

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Posted by Jon Daley on March 4, 2024, 10:21 pm | Read 202 times | Comments (3)
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From Jon  "[Yesterday's ultrasound] didn't report too much that we didn't already know. There was a little fluid in her abdomen on that side, so I wasn't expecting much, but a fair bit came out last night, I think 100 mls in the last three drains. The fluid near her lungs is almost gone. Her stomach measurement is down a little, but the accuracy doesn't seem to be great. They are about to measure again once she pees from the lasix. They've turned her oxygen down to 1/4L.

They are going to start food through her today.

So, lots of good news."

Her stomach measurement this morning was even less. The nurse has turned off the oxygen. While she was awake, it was perfect. Now she is asleep and it is down to 96, which is still good. We had a start and stop and start again with the feeds because Grace threw up her ursodial. But so far, as she's asleep, it's been fine.

The diaper change and measurement and weight were a lot of movement for her, so there was a lot of coughing and some vomit. 

She asked me to hold her, but then changed her mind, so I am sitting by the crib holding her hand.

Posted by Heather Daley on March 3, 2024, 11:53 am | Read 799 times | Comments (3)
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In addition to the drain being installed yesterday, yesterday was moving day.  They have all patients move every month to allow for the room to be completely cleaned.  From the few examples I've seen, that generally means moving to a nicer room, since they can pick the day when the move happens, and so we moved one day early to ensure getting a nicer room.  The new room is at least 50% bigger, and the bed is double the size, and has a huge window sill due to an interesting architecture design that is hard to describe in person, so we'll have to get a picture of it.  If they hadn't done anything with the design, the window would have been facing a wall or maybe a tiny portion of the garden.  But, instead the installed a floor to ceiling mirror diagonally, and then a left-facing window, with a window sill that is probably 6 feet long, and 7 or 8 feet tall.  The result is that there is another "room" that I think with some pillows or blankets, might make for a nice little nook to hang out in behind the bed, so we'll have to try that out.  It probably won't work for Grace, due to all of her connections to the pumps, but I expect the siblings will enjoy it.

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Posted by Jon Daley on March 2, 2024, 7:22 am | Read 188 times | Comments (3)
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The last couple of days have been tough, but today is looking up. At 2:00 this morning, Jon called me to say that her breathing was worse and they were considering bringing her up to the ICU. I called my sister, she prayed for us. 45 minutes later, Jon texted to say that they had increased her oxygen and her breathing was better, so she was not going up to the ICU.
In the morning, Jon discovered that they had actually turned up the wrong oxygen supply, and she was getting the same amount that she had been. So that means that God helped her breathe last night despite the nurse's mistake.
Jon also had a good last rounds conversation with the doctor that he'd been having trouble communicating with. He had some good conversations with nurses about beeping and things, and despite being up partly in the night with the ICU investigation, he got a good amount of sleep. So that is an answer to prayer also.
This afternoon, they put in a drain to her abdomen, and have gotten out a significant amount of fluid so far (I think over 100ccs.) She has been sleeping a lot, so it's hard to know how that's affected her, except that it seems like sleeping peacefully is probably a good thing and that she's more comfortable.
Today is also the day of official engraftment! Her ANC was up to 700 today. Yesterday, there was one reading that was 480, but because they took another reading that was over 500 it still counted, so today is the third day.
Please continue to pray for wisdom about her liver, as we're still not sure what's going on with that.
I've had a lovely time at home, including many conversations, a game of Wingspan, and a beautiful hymn sing. I'll be bringing Faith back down with me in the morning.
Grammy is staying with Grace tonight, Jon is sleeping at the apartment. Grammy helped him pack up the old room and set up the new room. Every 30 days, they need to do a whole thorough room cleaning, so we needed to switch rooms. It is bigger than our old room.

Posted by Heather Daley on March 1, 2024, 10:50 pm | Read 1238 times | Comments (8)
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Noah did a good job driving in terrible Boston traffic, but it meant we got home late and I didn't get to talk to Jon for very long last night. The ultrasound revealed that Grace definitely has problems with her liver; she has also been in more pain. By the time I talked to them, she was content sitting and reading books. But her liver definitely could use your prayer. Also, since now that I'm home Jon is at the hospital by himself, he can use your extra prayers. Thank you.
Posted by Heather Daley on February 29, 2024, 6:43 am | Read 115 times | Comments (3)
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The last several days have been back and forth. I’ve started several posts in my head, and then they end up changing. The weekend doctors cancelled the stool studies, then the attending on Monday re-ordered them. Jon had some very frustrating conversations with the doctor, but an encouraging one with the social worker. Also, conversations with nurses and clinical assistants about ratios of pee and poop in potties and diapers. But before they actually put her on precautions, Grace got some time in the morning in the playroom with PT, who was happy with her strength for squatting and getting up and down and reaching.

I also forgot to post this picture of her walking with her shopping cart, from a couple of days ago.

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Posted by Heather Daley on February 28, 2024, 7:52 am | Read 244 times | Comments (10)
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Once again, it was good for me to visit home. This time, I brought Joy back with me. We left later than I meant to, for various reasons (one being the second batch of Victory tshirts came in!) so we had a bit more traffic in Boston than I have yet driven in. It was stressful for Joy, I think, but I am getting used to it.

Grace was so happy to see Joy! They have a secret handshake that in the past Grace has sometimes rather reluctantly done. But this time, she volunteered all the pieces, including the last one, and that made Joy happy, too.

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Posted by Heather Daley on February 24, 2024, 4:09 pm | Read 667 times | Comments (2)
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Please pray for Grace's intestines to heal. The doctor is concerned about her continued diarrhea, and so stopped all formula feeds for a few days. She's getting all her nutrition through IV. She will eat bites of things here and there, but is not really taking things by mouth either. This is expected, but the sooner we can get her back to digesting the normal way, the better.

We are starting to meet other parents on the floor. Several other kids here are not doing as well as Grace, so if you think of it you can pray for them too.

Joy had a good visit. Hopefully I'll get to pictures and a more detailed update soon.
Posted by Heather Daley on February 23, 2024, 9:11 pm | Read 513 times | Comments (2)
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Grace had a great day today. She went out for a walk, wasn't even too upset when Heather left for Hillsboro, waved at everyone as we walked down the hallway.  (She was especially adorable today because she brought a toy vacuum cleaner instead of her normal shopping cart, which is useful for stability as well as bringing things everywhere).  Various staff members thanked her for cleaning up the hallway)

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Posted by Jon Daley on February 20, 2024, 7:52 pm | Read 235 times | Comments (10)
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As of April 8th, we will be home and the information in this post is out of date.

Click here (or see below) for instructions to visit or send us mail.

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Posted by Jon Daley on February 19, 2024, 1:50 pm | Read 273 times | Comments (6)
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Jon wrote today:

When I said it was a "bad day" the other day, a nurse corrected me and said "good moments and bad moments".

This morning was good and she played in the playroom for quite a while. She did throw up after eating. But has continued to ask for food, and hasn't thrown up yet...

She looks brighter than she has been the last few days.  Her white blood cell count has gone up from zero, though the doctor stopped by to chat since we didn't see her this morning.  She said it is common for the white blood cell counts to "flicker" as best as I can figure out, they measure the non-active white blood cells and so if they are out working on healing some area of the body, they don't get counted, so if those 30 get assigned to go work tomorrow, her count could go "down" but that isn't mean anything bad.

So, in short, it is possible this is a turnaround, but it might go up and down for a little while still.

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Posted by Heather Daley on February 18, 2024, 8:40 pm | Read 131 times | Comments (7)
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Grace had a fever overnight so Saturday morning they gave her Tylenol. She seemed a bit better, happier. She even gave me some smiles.

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Posted by Heather Daley on February 18, 2024, 9:25 am | Read 422 times | Comments (5)
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Grace has been in pain and sleeping a lot. These are the hardest days when her counts are low before Faith's cells take hold.

I've been home and that's been good. It's hard to be away from Grace when she's suffering, but I know she's in good hands with Daddy. And it's been good to be with the other kids.

Pray for engraftment soon and endurance for Grace in the meantime.
Posted by Heather Daley on February 16, 2024, 1:46 pm | Read 155 times | Comments (8)
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I walked home late Monday night, because there was supposed to be this big snowstorm. Jeremiah was already asleep, sprawled all over the bed. In the morning, it was only raining Jeremiah and I had leftover pizza for breakfast, and we walked to the hospital in the rain.

The nurses and child life had gotten Jeremiah a poster and some balloons, so that was fun. We also had some birthday stuff in a package from a friend.

He played with Grace in the hallway until somebody told him he wasn't allowed to be in the hallway. Grace enjoyed being out there again.

However, then it was time to put in the NG tube. As per usual, she did a great job. But she really doesn't like having it in. Her nose runs, and it moves when she swallows. She threw up once, the first time she ate something with it in. But after that she was able to eat.

Her temperature is slightly elevated, but not quite a fever level. Her blood pressure is also slightly elevated, and overnight her magnesium levels were low. She slept all the way through like usual, but now she's just cuddling in my lap. She is not feeling very well, not feeling like herself.

Jon and Jeremiah are planning a surprise for me that they're going to bring over from the apartment. Then Jeremiah and I will go home. Hopefully I'll be able to get a nap, since I woke up to lots of beeping throughout the night.

Posted by Heather Daley on February 14, 2024, 7:45 am | Read 484 times | Comments (9)
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