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.

Jon has returned to work, with mostly regular hours.  The family is happy to be back together and enjoying conversation and games and just regular life together.

Grace has a bone marrow aspirate scheduled for tomorrow, to verify that everything is working as it should, and we expect those results to be good.  She'll get another one around day 100 and that is the next milestone we are looking forward to, as she should be able to get off cyclosporine at that point, which causes lots of side-effects, so the other medications can stop soon after that.

One such side effect that we had heard about but she had not experienced until this week is that she is growing hair on her face and ears, so think of a combination of teenager peach fuzz and old man hairy ears and eyebrows, and you'll have a good idea of what it looks like.

Grace often asks if the baby is awake and likes to feel its kicks.  Heather has been feeling pretty big, and measurements confirm it and there is a question if there are any tests to do (glucose or an ultrasound).  We've been joking about whether there is a hidden twin, but we're pretty sure there isn't. Laughing


Posted by Jon Daley on April 23, 2024, 6:40 pm | Read 190 times
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Peach fuzz is one thing, but those spots on her forehead freaked me out at first!

Posted by Linda Wightman on April 23, 2024, 7:20 pm

Grace is in our thoughts every day. Best wishes to all of you, especially with a new baby coming soon.

Posted by Susan Davis on April 23, 2024, 8:01 pm

Thinking of Grace every day.

Posted by Susan Davis on April 23, 2024, 8:13 pm

Nice to read this update! Sending love to you all.

Posted by serina on April 24, 2024, 10:58 am

Happy to read of all the progress!

Posted by Stephan on April 24, 2024, 4:24 pm

Thinking of you all and praying for Grace. I love seeing all the wonderful pictures!

Posted by Elaine Anderson on April 24, 2024, 8:57 pm

It must feel so good to be back home. I am sure it is good for Grace and everyone else, too. Love to all.

Posted by dstb on April 24, 2024, 11:30 pm

Praying for Grace and you all every day and thanking HIM for HIS answers <3

Posted by Pami Gregorio on April 25, 2024, 8:26 pm

Thank you for the continued updates! Blessings to you all and prayers for Grace and good test results . That photo of Faith and Grace napping is the picture of love and courage.

Posted by Chris S on April 30, 2024, 9:40 am

wonderful news and amazing progress...thrilled for all of you as life returns closer to normalcy.. Hugs

Posted by Laurie on May 6, 2024, 11:56 am
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