1: The number of teeth Gracie has lost (or that was pulled because it was super loose!) this week.
4: The number of new(ish) phrases that Preston is saying that really crack me up. These are the results of watching the NBA playoffs, the US Open and hitting balls off his T in the backyard.
"Yay, made it! Right on!" (Said with two enthusiastic thumbs up!)
"Awww, almost! Try again!"
"Missed it! No hoop"
"Uh-oh, I'll get it, Mama!"
17: The number of years since I have felt this bad from a cold... I have a wicked sore throat, deep cough, low grade fever and scratchy man-like voice right now. I just hope that no one else in the house gets it.
23: The number of times (from her waking until she finally went to sleep late at night) I re-diapered and dressed my daughter on Monday because she insists on taking off everything. (And, no, I am not exaggerating.)
Also the number of times I felt like I was going to have a nervous breakdown.
6: The number of times I cleaned up "potty drama" due to the fact that my little exhibitionist feels the need to go the minute she's diaperless. Ugh.
3: The number of diaper pins now holding her shirt to her shorts so that she can't randomly undress.
4: The number of times she has, so far, outsmarted the pin idea and pulled her arms through her shirt and then pulled (stretched!) the neck of her shirt down to her waist and shimmied out of both shirt and shorts! Can't ever accuse her of being undetermined.
14: The number of meds (not number of doses) that Gracie is currently on. Good grief.
2: The average number of baths that Gracie gets in a day.
I joke about her being Miss OCD and fixating on a bath, but the truth is this has become a huge issue. She absolutely insists on getting in the tub. Once she's in, even if for just five minutes, she's fine after, but then an hour or two later starts asking again. We have decided (for now) to give in to the request if she truly cannot be redirected. (I have re-directed her right now by letting her lay across my lap while I type. She is scrolling through a slideshow on my cell phone!) Anyway, my theory is she is getting input from the water that she can't get from other types of stimulus, like brushing or joint compressions. I'll probably never know... but will definitely be bringing it up at our appointment with the Behavioral Pediatrician this summer... along with all the other obsessive behaviors that are getting worse by the day. (I also wonder if her new meds to help with her pain association during feedings are contributing to her increased OCD and anxiety.)
10 or 11: The number (age in years) that we should expect Gracie to need spine surgery. YAY!!! Great news! We saw the new orthopaedist on Tuesday (Hannah, he totally passes the coffee test!) and he feels that despite the severity of her curve and the obliquity in her pelvis when she stands and walks, Gracie doesn't need surgical intervention at this time (provided that everything progresses slowly and her lung capacity is not further compromised). He also stated that she doesn't need any kind of bracing for her scoliosis or her legs, as he feels that more than benefit her, these things would inhibit her muscle development and make her more apt to give-up working so hard on walking and standing... and she is, indeed, working hard!
3: The number of "catch-up posts" that I've started and not yet published - - one of which is about all of Gracie's hard work at therapy! Despite all of the obsessive behavior, there is a lot of good happening, and that is why I haven't yet become certifiable!
Wednesday, June 24, 2009
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8 comments:
Oh, sweet friend! So much going on!
Loving: Gracie's lost tooth (big girl!); Preston's phrases; the fact that your new orthopaedist passes the coffee test (yay!) and the news that he doesn't think Gracie needs surgery soon (super yay!). Hoping: You are feeling better as I type this - so bummed you've been sick, K; you get some good support and advice from your behavioral pediatrician (does s/he pass the coffee test or is s/he new?) so that Gracie and you can enjoy a variety of summer activities - not just the strip down and ask for a bath variety :-).
With love and hope and hugs to all of you!
*hannah
14 meds? WOW, my friend. What for?
And also WOW on Gracie's determination on removing her clothes. I can only imagine how absolutely frustrating it must be...but something about this "quirk" is quite endearing too.
Love to all of you, Amy
Krispy Marie. How I love love love your posts and YOU. The numbers countdown ...the rundown of your day and all the things mommies really DO get done (and you ten times more) in a day, even though the "to do" list remains so long always. The wedding pictures, the shoe thrown out the window and the ever heart-holding Miss Gracie. And dandilion blowing. You, your family, and your life bring so much more to my own. Thank you for all of these postings. I love you so much. I'm so sorry you're sick. :( Hang in there, friend. Kiss that 10-year hubby of yours. You both are just as beautiful as you were on that day ...maybe even moreso. :) love Barecca Jane
Kristi, I think we are both in the midst of OCD/anxiety hell right now! I'm glad you are able to still keep your sense of humor and hope through it all. It's really all we have, when you come right down to it, isn't it? Here's hoping you and Gracie get some relief soon! Hope you are feeling better soon, too--feeling bad never helps when you're already dealing with stress.
Hope you have a good weekend!
Hugs,
Leslie
Completely illuminating and utterly exhausting and yet all done with such grace dear Kristi!
Amy, I keep trying to remind myself of that the stripping obsession is, indeed, a true testament to her determination - - even if also compulsive!
To answer your question about Gracie's meds:
* 3 cardiac
* 1 neuro for migraines
* 2 neuro/nervous system for anxiety/pain associated with feeds
* 1 GI for gastritis (we just D/C'd one for reflux!)
* 1 allergy
* 1 for secretions
* 2 inhaled meds (1 to manage pseudomonas in her trach and one prophylactic steroid for her lungs)
* 1 antibiotic ointment for her blind eye
* 1 ointment for her sighted eye
* Allergy eye drops for her eyes
* and OTC lubricating drops for both eyes due to lack of blink
Woosh!
finally caught up with the flock of Swanns...wow. I enjoy your stories so much..actually, we all do. Kierstyn, Maddy and I have been reading and watching your videos for the last 20 minutes. they keep watching mama's eyes for tears. the Climb video was so moving, I can't even tell u how much we loved it. love u all. you never cease to amaze and inspire me.
so honored to know u and call you my friend.
sorry about the anonymous comment, can't seem to recall my password and gave up on trying that route.
Hee hee, I see my twin couldn't figure it out either. we are soooo the same. love you guys!
Amy
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