Home sweet homeJanuary 05, 2008 by Bill Strong
We're home!!! After three weeks and one day, the doctors let us leave the hospital. We are thrilled to be home and ready to handle Gwendolyn's care on our own -- although she will be seeing doctors two to three times a week and will have therapy as well for some time. The even better news is that although the tests have not definitively proven her illness is botulism, she is continually improving. This week we have seen some huge jumps in her movement and the neurologist is confident that her symptoms and recovery are consistent with botulism and nothing else. The EMG test we did on Wednesday made the other doctors more comfortable with this diagnosis as well -- which definitely helped with our going home. She still has the feeding tube, but is nursing or bottle feeding some portion of her daytime meals now. And, although it will take some months for her nerves and muscles to rejuvenate from the damage the botulism toxin caused, she is then expected to develop normally and to catch up on any developmental delays by the time she is a year old. We are optimistic and hopeful that her progress continues.
Her doctors have confined us to home for at least a month as her immune system is still extremely susceptible and she is still quite weak. However, as soon as we get the OK, we hope to have Gwendolyn back in the loving and supportive arms of our wonderful friends. We have been so touched by your letters, calls, and continued concern. Thank you, thank you, thank you. We hope you know how much you helped keep us positive and capable of handling this stressful experience.
Victoria and Bill
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 concerned acts of kindness birthday family hospitalization video chase community giving therapy sma treatment acceleration act good things for gwendolyn travelShow 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 concerned acts of kindness birthday family hospitalization video chase community giving therapy sma treatment acceleration act good things for gwendolyn travel holidays doctor g-tube transportation research special outing power chair newly diagnosed uncategorized health insurance 3rd birthday daily care sma carrier screening giveaway photographer adapted toys grief sitting up 2nd birthday unite for the cure smaheadlines.com clinical trial 1st birthday hospice medi-calHide Tags
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)