Tuesday, December 23, 2008
This is a magic microwave shampoo cap that washes and rinses Avery's hair without water, while she sits in bed!!! Amazing!!!!
Avery had a great day. She was able to come off her bipap machine 3 times - for 3 hours each time. This will help her build up her respiratory muscles and test the left side of her heart out to also excercise it - to accomodate to pumping all that blood flow that it has never needed to.
All of her "numbers" and her exam tell us she is tolerating this well - but we are told it does take time for this process to occur.
She continues on her feedings through her jejunal tube - but we have had a hard time keeping it in place. It seems to spontaneously slip out into her stomach. ideally - they would like it past her stomach into her intestinal area so that if she does have any vomiting - she does risk choking or aspiratig on her feedings.
Avery was excitied to see her Aunt Jesse, Poppy, Gram Toole and Uncle Kevin come visit her today!
She is currently watching "Enchanted" (one of her favorite movies) with her dad and we will be getting an x-ray momentarily to see if the new feeding tube is in the correct position. Hopefully it will be - and we will all be settling in to get some rest.
--Thanks to all for your prayers, kind words and good wishes. I was with Avery on Christmas and she is doing even better today, as reported by my dad & sister!!!
Saturday, December 20, 2008
Actually, it was pinot grigio and marmalade, but I liked the alliteration. My friend Ali, known to some of you as the grubby wench (her soap company), in addition to being a saponification expert, is also an excellent cook, and she agreed to help my friend (or perhaps former friend?) Anne, and I to make some marmalade. I beg the question about Anne's friendship because she volunteered her kitchen, which -- after a long day, several bottles of wine, (good food) a lot of singing and dancing and pot-watching -- did not fare well. In addition to getting the hot, sticky stuff all over the stovetop, counters, and floor, we somehow managed to pour some in between the glass panels of her oven door. Oops! If anyone has a tip for how to clean that up, I'd love to hear it.
Happy first day of winter everyone! Sorry for the long delay. Tis the season to fall behind on virtually everything. Add to the regular busy-ness of the holidays an ice storm that left me (and much of the Northeast)without power for days, and blogging just falls to the bottom of the list for awhile!
So the news of the day is that my niece is recovering from 2 major open heart surgeries, and is coming through like the tough cookie we all know and love. Today a hospital employee brought her 2 big buckets of fresh snow from last night's storm which she promptly decided she had to taste!! (see the picture above) She's still on breathing assistance for a few days, but slowly being taken off of machines and meds as her body gradually takes over all of the work by itself.
I thank you all for your words of support, prayers and good wishes. I pass them on daily to her parents and they have helped everyone to get through this time knowing how many wonderful people are thinking of their daughter.
No Christmas shopping is necessary this year. Avery's recovery is all we could ever ask for!
Sunday, December 07, 2008
My heartfelt thanks to all of you who've kept my amazing (if I do say so myself) niece --and her parents & family -- in your thoughts and prayers this week. She was in surgery for 10 hours to work on her left ventricle and also to receive a mechanical heart valve. She will be sedated for at least another 24 hours, but her stats have been great and I've been told she looks excellent. FYI - she frequently looks very puffy and swollen for many days after her surgeries, and my sister and mom have been particularly pleased with how she looks this time, which is one of many signs that her heart is working better than it was before the surgery.
She still has another procedure ahead, and depending on how her stats hold up once she is awake and moving around, it may be done before the Christmas holiday (before scar tissue can build up), so I will continue to update you all on her progress and to ask for you to continue to keep her close in your hearts and minds.
In the meantime, I leave you with Avery's rendition of "These boots are made for walkin'" (or is it, Steak on the Roses??)inside joke
FYI, if any of you have been wondering, Avery is in the care of an amazing surgeon, cardiologist and medical professionals in the cardiac unit at Children's Hospital in Boston.
I am planning to see her this coming weekend, and will give a first-hand update at that time!!!
-Aunt Kerri signing off for now.
Tuesday, December 02, 2008
After a somewhat sudden, though not entirely unexpected turn of events, my niece Avery will be undergoing her fifth open heart surgery either Wednesday or Thursday of this week, to replace her aortic valve and continue to correct a congenital heart defect.
I am asking my blog readers to send all of your positive thoughts, good wishes and prayers her way. This strong, feisty four-year-old is my biggest hero and these recent pics don't begin to capture her enormous personality