Search Results: love

Day +146: Discharge Today!
Grace is all set to leave in a few hours - just waiting on paperwork. Her potassium is a little high, but they had taken off her potassium-lowering drug, and she has been eating 4-5 bananas a day, so they expect she will be fine once she goes back on her regular meds and has more choices of... (More)
Posted by jondaley on July 3, 2024, 9:28 am
Category: Grace
Waiting for results
Screenshot of a video call on Thursday:  Friday's procedures went well. They got plenty of marrow for their tests. The endoscopy showed the esophagus healthy. The sigmoidoscopy showed her colon quite inflamed. The surgeon could not tell the cause, but was confident that the... (More)
Posted by joyful on June 30, 2024, 6:41 am
Category: Jonathan, Faith, Joy, Nathaniel, Grace
Hospital Update
Grace has been on a clear liquid diet until today where she is getting nothing into her stomach until anesthesia at 5:30.  She will be getting a complete GI scope and a bone marrow biopsy.  Please pray for the anesthesiologist and the surgeons as well as for Grace. Jon called this... (More)
Posted by joyful on June 28, 2024, 8:42 am
Category: Noah, Grace
Investigating GI issues
Today, Boston called to say they'd like to observe Grace over the weekend and to prepare for admission on Friday. They will likely do a colonoscopy and maybe even an endoscopy. (And Dartmouth suggested they get some bone marrow while she's sedated.) She threw up her NG tube this morning and so... (More)
Posted by joyful on June 25, 2024, 6:20 pm
Category: Grace
Bone Marrow Donation Isn't All Its Cracked Up To Be
When Faith signed up for the donation, she was told to expect one or maybe two days of significant pain, and then a week of pain that should be managed with Tylenol and then no running and jumping for six weeks, even if she felt like it. She had 3-4 days of significant pain, and has certainly... (More)
Posted by jondaley on June 21, 2024, 8:37 pm
Category: Faith
Belly Hurts, Updated
Today is day +133. (Jon updated this post) Grace has been having belly pain and a lot of mucus in her stool, often with blood as well.  We took her off cow's milk again (she had been asking for it instead of almond milk.)  We haven't seen much improvement in the last week, and she... (More)
Posted by joyful on June 21, 2024, 11:22 am
Category: Grace
Hope Serena Daley is born!
May 31, 6:50pm 9 pounds, 11 ounces 22" All is well, praise the Lord of Hosts!   ‭Romans 15:13 KJV‬ Now the God of hope fill you with all joy and peace in believing, that ye may abound in hope, through the power of the Holy Ghost.   (More)
Posted by joyful on June 2, 2024, 9:06 am
Category: Pregnancy, Hope
Blue Shirt Picture #9
Today is the due date!  On Saturday, I had Noah take my traditional Blue Shirt picture. I'm ready to meet this baby!  My hips are sore from all the pressure.  I have to rest a lot, but not stay in one position for very long.  I did sleep well last night, for which I... (More)
Posted by joyful on May 27, 2024, 6:33 am
Category: Pregnancy
Day +100!
This is the day the doctors consider the transplant to be successful.  This doesn't mean that she's not still at risk for a bunch of things. But it does mean that Faith's cells are firmly established in her system and doing their job! (More)
Posted by joyful on May 18, 2024, 7:41 am
Category: Grace
Day +75, No News is Good News
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... (More)
Posted by jondaley on April 23, 2024, 6:40 pm
Category: Pregnancy, Grace
Happy, Happy, Happy!
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... (More)
Posted by joyful on April 10, 2024, 9:59 pm
Category: Grace
Homeward Bound!
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.... (More)
Posted by jondaley on April 6, 2024, 4:17 am
Category: Grace
Day +55
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... (More)
Posted by joyful on April 3, 2024, 8:44 pm
Category: Grace
Apartment Life
We are settling into our second week of being full-time in the apartment. Our schedule consists of: Adminstering meds 3 times a day and then washing all of the syringes and straws and flushes Keeping her central line clean twice a day ( Boston Children's says cleaning twice a day is... (More)
Posted by jondaley on March 26, 2024, 9:13 pm
Category: Grace
Bone marrow aspirate today
This includes anesthesia and intubation and all that goes along with that. Please pray for her surgery and for the results. Thank you. An "aspirate" in this context means removing a small amount (7 ml in Grace's case usually) of the bone marrow fluid and a biopsy is removing a small chunk of... (More)
Posted by joyful on March 21, 2024, 5:13 am
Category: Grace
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