Search Results: god

Sorry we left you hanging about Grace's recent appointments. Here are some things to be thankful for about Grace. She did really well during her audiology appointment. It took a long time, but she followed all the directions and was cooperative as usual. She does still have some hearing loss in... (More)
Posted by joyful on November 25, 2024, 6:59 am
Category: Grace
The appointment with the NF1 doctor went well. One of her oncology doctors was also there, the one who works closely in the NF1 world. Jon didn't remember meeting the NF1 doctor, but it was right at the very beginning, during Grace's first hospital stay, when she was diagnosed. So, much to be... (More)
Posted by joyful on November 6, 2024, 6:17 am
Category: Grace
So sorry I left you hanging.  Grace and I went back to Dartmouth the next Friday.  They did her bloodwork and the creatinine was just fine, so they were reassured and sent us home without further testing.  She has been doing well. Faith has had two soccer games now, and is also... (More)
Posted by joyful on September 1, 2024, 6:56 am
Category: Faith, Grace
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.)... (More)
Posted by joyful on July 26, 2024, 4:30 pm
Category: Grace
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
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
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
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
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
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
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
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
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
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
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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