I had to go calculate the day since we no longer count the days like that any more - it has been great to have less medical stuff going on these days, and we get more comments about her being "so cute" in the grocery stores and the soccer games, etc.

Her hair is growing in, and I don't think I've heard her referred to as a boy in a while (for a while she just looked like she had a really short haircut, but it is growing out more).  She discovered the 18 month clothes bin in the attic the other day and has been wearing some onesies, since she mostly still fits into them.  She'll turn three next month.

We continue to do weekly dressing changes - we had a full day yesterday and so she fell asleep during the change - it is hard to imagine kids screaming through it, but we are certainly blessed to not have that problem. She happily puts on her mask and then holds her hands above her head until it is done.

She has been gaining weight, and we've started up the steroid tapering off again and doctor visits are every other week, once a month to Dartmouth and once a month to Boston, so that schedule is nicer too.  It is possible that the steroid taper will be increased and be done soon, which then triggers the start of the cyclosporin (immunosuppresant) taper, which will be the end of the meds entirely!

Her nasogastric tube fell out while she was sleeping last week.  Both Heather and I had seen the tape was getting loose, but neither of us expected it to fall out, so we thought we would replace the tape the following day.  .  However, Grace woke up in the morning and brought the tube down already pushed out of her throat.  So, we proceeded to the semi-unapproved installation of a new tube, and it went successfully (I tested it out on myself last month, and got the tube down about a foot before gagging and deciding that if I needed to, I could do it, but since this was just "for fun", didn't need to continue further.  We'll see what Boston says about that on Wednesday.  Last time, Dartmouth recorded the procedure as "without contacting medical providers", and did an x-ray to confirm proper placement, but didn't explicilty forbid it in the future...  I think that because we know the exact length of the insertion, there is fairly little risk involved - a nurse at Children's told me that she will really start coughing if it is in her lungs rather than her stomach, and we verify the pH after insertion as well (the supply house apparently thinks it is reasonable for us to do the procedure, because they send all the equipment to do so, though maybe they are thinking a visiting nurse - they are sometimes surprised to hear that we do dressing changes ourselves).

The soccer "orange out" event was great - the high school principal said there was a "sea of orange" in the school that day, and there were a lot of people wearing orange at the game.  And they had a short presentation and a picture before the game.  And they had the captains of the opposing team give us some flowers (which though they are on the list of not allowed items in the house, we're thinking that probably that risk is pretty small at this point).  And they raised $1,600 for us that I've been thinking about donating to Hospitality Homes, an organization that provided subsidized housing to us in Boston, though I've also been debating about using part of it for some sort of special trip for the family.

Posted by Jon Daley on September 30, 2024, 10:15 am | Read 299 times
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Comments

I vote special trip for the family!!! :)
Niki

Posted by Niki Silva on September 30, 2024, 10:48 am

Praise Jesus!! We are rejoicing with you guys.

Posted by Bethany Grover on September 30, 2024, 10:50 am

Thanks for the update!

Donating some of the gift (maybe a tithe?) is good, but here's a Grandma's advice: I'm certain that the team wants to bless Grace, their teammate Faith, and your whole family. If I had worked as the team did to give you a gift, I would not be happy to learn that you had just given it away, even if I really liked the cause you gave it to. Gifts like that aren't just money; they're love. I'd want to hear stories and see pictures about how my gift helped your family along your healing journey.

Posted by Linda Wightman on September 30, 2024, 11:00 am

If I get to vote.....a family trip!

Posted by Denise on September 30, 2024, 3:01 pm

Loved visiting your home and meeting Grace at the dinner table having a good time. She is amazing as are all her siblings and parents. So much her very own person. Thank you for this update. I do agree with one opinion above that the orange fund raiser movers and shakers would love to hear that the money collected was used for a special family trip to celebrate Grace's progress.

Posted by Nancy on September 30, 2024, 3:14 pm

Wonderful news and I'm leaning with the majority "vote" : as well for you to receive and use the blessing raised as provision where your family needs it most.
To honor the leading in your hearts, maybe consider dividing it into allotments?
A small sum towards the Hospitality Homes Program (if you feel the Lord leading you in that way)...sacrificial generousity definately brings joy to the heart of the giver and receiver.
A second portion could be utilized as a peace giving provision to pay down or put towards any medical bills, but the majority, if not all (in my opinion as well), as a gift for praise and rejoicing. A time of celebration, relaxation and rejuvenation for your entire family to take part in.
Love and continued prayers for your Grace and your whole family as well as wisdom and discernment on how to utlize this generous gift.

Posted by Faith on September 30, 2024, 9:31 pm

I'd wondered if people who gave the money would think it odd that we would give it away, but on the other hand, as much as some particular money is in one bucket, it is also all combined, so like the people who direct United Way to make sure their money doesn't go into a charity they don't like, they just direct more of the unrestricted funds, so there really isn't a difference in the end.

I think a donation is more exciting than it going towards the $2,200 we've spent on gas this year (not all going to the hospital). And Hospitality Homes, though not free like David's House, providing an apartment for $40/night for 42 nights was really great, and that made things much easier than our next option, which had more complicated parking but cost $125/night.

But, a friend just suggested a house up in the White Mountains for Thanksgiving week, and since we celebrate Thanksgiving early, that might work out perfectly.

Posted by jondaley on September 30, 2024, 9:52 pm

I agree with some of the others that the money should be used for your family. They too have been through a lot and deserve some extra down time. Glad to hear things are going so well.

Posted by Joyce Bosse on October 1, 2024, 8:46 am

I vote for family bonding activities. :)

Posted by Heidi on October 2, 2024, 6:52 pm
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