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 the right ear. It's the kind of loss that's associated with fluid or congestion, which is why the Boston audiologist wasn't concerned because she had just gotten over COVID then (in January.) This audiologist also wasn't concerned because to her that means temporary loss. But I pushed her because Grace has not had any congestion or a cold in a while. So she referred us to an ENT to check out the ear. We have not made that appointment yet.

The next day, Jon took her back up to Dartmouth for her followup leg xray. The orthopedist was very happy with the healing. Jon was concerned because he could see a buildup of bone in the broken spot, but the doctor said that will go away with time. She also said that you could see the growth "rings" (like a tree!) and if you measured precisely, would be able to tell the dates of when she stopped growing. She was assuming that would be chemo dates, but we know she stopped/slowed her growth much earlier because of the leukemia. We are hoping she will do some catch up growing, but three years old is when the growth curve starts leveling off. The orthopedist figured Grace would also level off and just be short her whole life. So we will see.

Jon also talked to the nutritionist that day and got some guidelines for moving towards getting the NG tube out. Grace had her last dose of cyclosporine last Tuesday! So now the only thing she gets through the NG tube is formula, and some water to flush the tube when the bottle is finished. We reduced her feeds to one bottle a day a few days ago. We aren't counting the calories she is consuming by mouth, but it looks good so far. And the nutritionist said that as long as Grace is not below 11kg by February, she'll be happy. So we have a couple of kilograms of leeway as we reduce her formula and get her to eat all by mouth.

Grace easily (with gentle reminders) drinks her 600mL of liquids in the day. So we really have only been giving water in her tube to flush the formula. She tolerates a nice high rate from her pump, so her one bottle is done in just under two hours. So that means she is backpack-free for most of the day! Soon she will be tube-free, and that will be quite the day of rejoicing! We are anticipating that to happen before Christmas.

And we're trialing introducing dairy again. She is now having baked in dairy - brownies, rolls, that kind of thing.

She still has one more medicine to take, an antibiotic to replace one that she used to get in her central line once a month. This one is oral at my insistence. I decided that we would not even give her the option of putting it in the tube. It looks exactly like bright lemon-yellow acrylic paint, texture and all. She says it "tastes bad" but she swallows it like a champ every morning, quickly followed by some water, almond milk, and whatever breakfast food she's eating. (The first week or so, I gave her a candy corn chaser, but now she's satisfied with whatever's in front of her.)

All her bone marrow results came back good - her marrow and blood are still all Faith's, praise the Lord! And we have not seen any sign of GVHD even as her medicines are off.

As the one-year anniversary of her diagnosis approaches, I am doing a lot of remembering. We have so much to be thankful for. We had Daley Thanksgiving on Saturday, and we all remembered the previous year's event when Grace was only allowed her colonoscopy cleanout prep and clear liquids while the rest of us feasted. During church yesterday I was thinking how at this time last year, after her colonoscopy, Grace was pale, anemic, tired, with a distended belly and concerning output. In my memory, I can fast forward to now. (The day in and day out of living the last year was anything but fast. But it really does work to put one foot in front of the other and eventually get somewhere.) Now Grace is so vivacious, happy, pain-free and VICTORIOUS! I am so thankful for the healing transformation of this precious little girl.  I'm thankful again and again for God's grace to sustain us and for God's people to be his hands and mouths to support us in the whelming flood.

Swimming!!

Shopping without wearing a mask.  She wanted to hug the bananas. (:

Look at that hair!

 

Thinking of how God has healed the physical as we step through life one day at a time, we also need to persevere in the emotional/mental healing. I do see improvements in our family and individual wellbeing, but there is still more healing needed. There are fewer bad days, but they do still come.  We are going to a friend's condo in the White Mountains for a family retreat this week. Please pray that it will be a blessing to our relationships.

On Christ the solid Rock we stand!

May God bless you all this week and I hope you can find plenty to be thankful for, whether your country celebrates it officially or not.

 

Posted by Heather Daley on November 25, 2024, 6:59 am | Read 80 times
Category Grace: [first] [previous]
Comments

Thank you for the update. You have all been through so much this past year. Hugs to you all and I hope you have a nice time all together this weekend.

Posted by Dstb on November 25, 2024, 7:29 am

I love that you continue to share Grace's journey. I thank God for Grace and for your precious family. Praying that your time away together this week will bring love and strength and healing of family bonds to evey one. Christ IS our solid rock.

Posted by Nancy on November 25, 2024, 8:18 am

Praising God with you for all of the Victories that He has brought sweet Grace this last year. May His steadfast presence continue to provide healing and comfort as you each look back and see His hand through this trial.

Posted by Michelle Rohrbacher on November 25, 2024, 9:03 am

We are so thankful with you! God bless the Daleys!

Posted by Jen Newhouse on November 25, 2024, 9:46 am

Thanks for the update. I love the pictures! Praying for continued healing in all dimensions.

Posted by Kathy Lewis on November 25, 2024, 12:28 pm

Lovely Grace, how cute the banana hugging. We are happy to see her smile.

Posted by Rujiraumporn family on November 27, 2024, 10:06 am
Add Comment
Add comment
E-mail me when comments occur on this article

culpable-adaptable