What a Week!!!November 22, 2008 by Victoria Strong It has been one of those weeks -- one thing after another. It all started with the stress of the fire and, even after the evacuation warning had cleared, watching Gwendolyn closely for any signs of distress. Then on Monday we started construction work on our house. I wish I could say it was something really fun that we have been wanting to do, but it is one of those "Have To" projects that we have put off as long as possible. It is, of course, taking longer than anticipated, but our contractor and his workers are very nice and are doing their best to accommodate our situation -- tarping off rooms and even hoisting themselves, all of their equipment, and all of the materials over our second story balcony so we can keep Gwendolyn out of the dust and dirt. Since we were already rearranged and discombobulated, and with an unexpected delay in the construction project, we decided to go ahead and paint the entire upstairs where we spend most of our time with Gwendolyn. More people in the house, more noise, more chaos -- our decision of course -- and now we have all of our windows open and fans blowing to minimize paint fumes. But, the color is fabulous! Of course, we also had the stander debacle and an additional meeting this week with a different therapist that was very frustrating. Today we had Gwendolyn's second flu shot and her first RSV shot. I've been dreading the flu shot for weeks because it just seemed to really tire her out so much last time. But, she can't get the flu, so we didn't have a choice. The shots went okay, but on our walk home from the doctor Gwendolyn's bi-pap suddenly made that dreaded loud "ALERT...ALERT...I'M OFF" beeping sound and died. Yes, quit, kaput, finito! We still don't know exactly what happened. It had been making a funny buzz sound for a few days and started beeping oddly, so we called the equipment company and were told to watch it and that they had a back-up ready for us. They promised they could get us a back up within and hour. The problem is Gwendolyn doesn't have an hour anymore. So our walk turned into a jog with Bill calling the company to get the new bi-pap to us asap and running through emergency scenarios and our plan aloud to one another. Gwendolyn was okay, but definitely huffing when we got home. Fortunately, the bi-pap started working again, but we weren't putting our trust in a buzzing/beeping bi-pap. The equipment company had one to us in about an hour -- true to their word. All is okay, but it has just been one of those weeks. Not all bad. In fact, we did some really fun new things this week: Bill had a fun Dad's poker night, I had a great sushi lunch with my friend, Daalia, and went to a fabulous pre-Thanksgiving party at the Paskins' home -- I even got to wear a pretty dress. But, I'm definitely glad to start a new week, a fresh start. The paint really does look great, though!
The photo has nothing to do with this post, but since I don't have a photo of chaos, it was the perfect excuse to post another tiny baby pic. Only two weeks old here.
Talk About It
Are You An SMA Carrier? Advocating for the Affordable Care Act: Gwendolyn's Story (Video) It Arrived!!! Let the Adventures Begin!
200k for sma news featured gwendolyn strong foundation fundraiser spinal muscular atrophy gwendolyn teamgsf sma tips parenting a child with disabilities sma awareness friends sponsor-a-mile development acts of kindness concerned birthday family video hospitalization chase community giving sma treatment acceleration act therapy travel good things for gwendolynShow More
200k for sma news featured gwendolyn strong foundation fundraiser spinal muscular atrophy gwendolyn teamgsf sma tips parenting a child with disabilities sma awareness friends sponsor-a-mile development acts of kindness concerned birthday family video hospitalization chase community giving sma treatment acceleration act therapy travel good things for gwendolyn holidays doctor g-tube transportation research special outing power chair newly diagnosed uncategorized health insurance daily care sma carrier screening 3rd birthday giveaway photographer adapted toys grief sitting up smaheadlines.com 2nd birthday clinical trial unite for the cure 1st birthday hospice medi-calHide Tags
2018June (1) April (1) March (1)
2017October (3) September (1) April (1) March (1) January (2)
2016December (1) November (1) October (1) September (2) August (2) July (1) June (1) May (1) April (2) February (2) January (4)
2015December (2) November (1) October (2) September (2) August (4) July (3) June (2) May (1) April (2) January (4)
2014November (3) October (3) September (3) August (3) July (3) May (1) April (1) March (5) February (2) January (2)
2013December (2) November (3) October (3) September (3) August (4) July (2) June (4) May (3) April (4) March (3) February (5) January (5)
2012December (3) November (8) October (4) September (5) August (8) July (7) June (8) May (8) April (9) March (7) February (9) January (9)
2011December (9) November (16) October (15) September (14) August (15) July (16) June (13) May (27) April (22) March (21) February (20) January (21)
2010December (19) November (22) October (16) September (23) August (23) July (27) June (24) May (24) April (21) March (26) February (19) January (24)
2009December (21) November (20) October (31) September (25) August (25) July (47) June (44) May (34) April (27) March (35) February (35) January (35)
2008December (37) November (22) October (31) September (20) August (30) July (27) June (18) May (5) April (6) March (3) February (1) January (2)
2007December (7) October (1)