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A rough week, but grateful

August 22, 2011 by Victoria Strong

Gwendolyn has had another rough week. And this weekend was down right lousy. The good news is that from a respiratory standpoint she is healthy -- that is very, very good news for SMA. The bad news is this darn infection (or the problem we can't seem to figure out) just won't go away. It is now a three-headed monster battling a third round of antibiotics -- and the last dose didn't really do much at all. All week long Gwendolyn just hasn't been herself. Hear heart rate has been racing through the roof and she's been battling a nasty fever. She's been tired -- really tired -- which means treatments are a challenge, bathing is difficult, dressing her, and anything that requires us to remove her bipap breathing machine is, frankly, life ending. But it isn't just off the bipap that she seems to struggle. She is choking when we carry her, she doesn't want to go out, she doesn't want to do anything that requires additional energy. She just can't do it. And there were times when she has seemed listless and without her usual sparkle. We have had tough moments this week -- really tough -- and a lot of worries, but then she will excitedly tap her fingers to Wizard of Oz, have a great experience with Gramma, or squeal as Bill and I dance with abandon to her rock n' roll preschool music (Pat-a-Cake has never been so hip). And during those moments we breathe a sigh of relief. We hope again.

Throughout Gwendolyn's journey with SMA, she has always been our guide. And the only way we keep from going completely insane is to know in our fiber that this is Gwendolyn's life and she calls the shots, she will tell us when she has had enough, and she will determine her destiny. We just have to listen.

During these tougher days it helps to remember all that is good because there is so much good in our lives and there is so much for which we are grateful.

  • Gwendolyn's resilience -- She goes through so much and she does so with so much wisdom and understanding -- and so, so much forgiveness. After each difficult episode, Miss G brushes it off and is ready to laugh again, feel loved, find the joy in the world. And seeing her happy is what helps us carry on, too.

  • Gwendolyn's doctors -- Dr. Abbott and Dr. Yuan continually go above and beyond, continually help us and help her as we all struggle to find answers and comfort -- and they do so with compassion and kindness.

  • Gwendolyn's nurses -- Gwendolyn's night nurses (Evelyn, Deanna, and Gina) and hospice nurse (Laura) are incredible. These women adore Gwendolyn as she does them and they truly know her subtle cues -- sounds and looks that most don't even notice, but to all of us speak volumes and unlock answers to Gwendolyn's world.

  • A complete partnership -- This stuff is hard, really hard and Bill and I never take for granted that we are fully in this together, partners. We share duties equally, we share stress equally, we comfort and support our way through this as a team. And we know that is rare.

  • Friendship, Family and Kindness -- We never cease to be amazed by the support and kindness of friends and family, and how much it helps to bring joy to Gwendolyn and to heal out hearts. To have such sincere good people in our lives, to be recipients of such thoughtfulness and generosity is a blessing...and we truly appreciate those who love us and our little girl.

  • Moments of sparkle -- That look in her eye, that agreement to read a book, that faint sound of a giggle, that need of comfort and being able to provide it... those moments that fill our heart with calm, with certainty that today Gwendolyn is going to be okay... for each moment we are so grateful.

We started yet another round of antibiotics on Saturday and it has helped bring down the bad weekend fever and sky-rocketing heart rate already. She has color back in her cheeks and her finger tapping appeared again last night. We hope she starts feeling less uncomfortable soon. Why this is all happening is still unclear and there are a lot of things to be figured out, but we are so grateful to see Gwendolyn's sparkle returning...even if only in short doses.

Talk About It

so sorry to hear Gwendolyn isn't her normal self these days! I hope and pray these antibiotics kick in and starting doing their job SOON! Sending hugs your way!!
Posted by Jennifer Garner on 2011-08-22 09:52:38
Dear Victoria - Doug and I read your comments with compassion and love. We wish Gwendolyn's sparkle moments, peaceful moments, and "finger-tapping" moments could be more often, but am sure each one is cherished! You and Bill are her every-second angels and we send our love.
Posted by Doug and Mary Lou on 2011-08-22 10:14:11
Much love and many hugs to y'all and sweet Gwendolyn. We're all thinking about her and hope that she recovers from this rought time really soon. Love, Jon
Posted by Jon G. on 2011-08-22 10:18:53
Dear Strong Family, I have been following your journey with SMA for several years now and have never commented. Now it's time for me to say you are an amazing inspriational family. Best you Gwendolyn, keep those fingers tapping!
Posted by wendyg on 2011-08-22 10:27:17
Bill, Victoria, and Gwendolyn- I love you guys and have had Gwendolyn on my mind each and every hour this weekend. Her unbelievable resilience and gracefulness is the most powerful kind of strength I've ever seen. She's an amazing wonder.
Posted by Caitlin (Needham) McAuliffe on 2011-08-22 10:28:20
Hope G gets over this real soon!! Hugs to all of you...
Posted by Marcela on 2011-08-22 10:44:20
Well, my sweet Caitlin said it so well and I will just tag on more love and more hope for all of your moments and for Miss G, peaceful, finger-tapping, sparkly days. The entire Needham clan and extended crew, send love in great abundance
Posted by Zoey's mom on 2011-08-22 10:45:18
Praying for Miss G..praying for comfort and healing. Sending my love, thoughts, and hugs to you all.
Posted by Tammy Duke on 2011-08-22 11:43:20
Big hugs to G and family. I hope she's feels better soon!
Posted by gettyowl on 2011-08-22 14:37:03
Sorry to hear it has been extra rough lately. I'm glad to hear the fever is down and some finger tapping has resumed. I hope this week can bring fresh energy to Gwendolyn as well as you and Bill. All our love, The Stones
Posted by Stone Family on 2011-08-22 14:41:50
Praying for Miss G and for your family! Our SMA Children are so inspirational!
Posted by Julie Prendiz on 2011-08-22 16:45:56
Oh this post just made my cry. I am sad to hear that Gwendolyn is not improving as quickly as she normally does. You are so blessed to have all the things you mentioned...a loving marriage, great friends and family, and lots of support. Gwendolyn is lucky to have two amazing parents who strive to make her life as wonderful as possible. Sending lots of love to all of you!
Posted by Jessica Gustafson on 2011-08-22 17:37:52
Praying for Gwendolyn and you both. I am so orry to hear about the ongoing infection, but hoping this new drugs can rid her body of it. Happy t know her finger tapping is back smile --Mari
Posted by Mari on 2011-08-22 17:43:04
Sorry to hear she has been having a tough time. Hopefully the latest round of antibiotics will get her back up to her old self. Your words of gratitude are so touching and inspiring. You are an amazing family. Your little love will be in my thoughts and hope her finger tapping and sparkle keeps on lighting up your days.
Posted by Dria on 2011-08-22 18:33:42
Dear Strong family, I have followed your posts since my little girls was diagnoised with sma. Your words always bring me to tears, and you are an insperation to all sma families. I will keep your Gwendolyn in my prayers and hope that her sparkle comes back full force very soon. Tonya
Posted by Tonya Moroney on 2011-08-22 19:25:46
Our prayers are with sweet Gwendolyn and family. Much love from your friends down in Texas.
Posted by Keri K on 2011-08-22 19:51:26
SO SORRY TO READ THIS!! It breaks my heart to read that G has been struggling! Prayers for your girl and hope the antiobiotic kicks this unidentified monster in the BUTT! HUGS!!
Posted by Shellie Lopes on 2011-08-22 20:09:15
We're keeping sweet Gwendolyn front and center in prayers here......... praying that you have found the medicine to knock out the germs and allow her to feel better.......... Praying soon she is pulling you out the door to go to the swings and count the boats soon........ bug hugs Penny
Posted by Penny on 2011-08-22 20:18:49
As ever, I am in awe of you both and of Miss G and her courage. I send you all much love and many hugs, and hope she will be back to full sparkle very soon. xoxoxoxo
Posted by Summer on 2011-08-22 20:31:51
So glad you are seeing the finger tapping and some sparkle back in your sweet little girl. The strength and resiliency she has, the fighting spirit, the loving of life comes from those she is surrounded by, especially you Victoria and Bill. You have given Gwendolyn such an incredible, love filled life and she thrives in your love! My thoughts and prayers are with you all and hope to read much more finger tapping goodness heading your way!! Love and hugs, Em
Posted by Emma on 2011-08-22 21:33:26
Bless her heart....u ALL..amaze me!!! Thank u for sharing this.....ur babygirl....is sooooo inspiring, beautiful, and a true warrior! Never stop dancing mom&dad......I hope u just dance!....Sooo precious!!! Thoughts...prayers....love...to u ALL;)
Posted by Ianthe Sampson on 2011-08-22 21:42:47
Prayers for your beautiful Gwendolyn and for the two of you. We have been there too.
Posted by Nicole newfield on 2011-08-22 21:56:16
Oh sweet Gwendolyn! My heart hurts to know you are not feeling well. We love you so very much and are sending tons of healing thoughts.
Posted by Jennifer Calafiore on 2011-08-22 23:40:49
Much love and prayers for Miss G. Hang in there and keep tapping those precious fingers.
Posted by Jennifer on 2011-08-22 23:55:24
Sending love and more strength to make it through these rough times. What a blessing little G is!
Posted by Holly on 2011-08-23 03:41:09
Sending love, strength and prayers! Hoping today is a much better day! ((((HUGS))))
Posted by Kristen on 2011-08-23 06:17:41
The positive energy and boundless hugs and kisses via this message....hoping and praying that that ugly three headed monster moves along quickly and miss G is tapping to all that is good in her world! be well....((((((((()))))))))))) xoxoxoxo
Posted by Lisa Prokopetz on 2011-08-23 06:56:06
The Strong Family is in our prayers and thoughts always. You ae truly amazing parents and Gwendolyn is blessed to have your strength and caring in her life. My grandson "Angel Owen Shuler" is smiling down at his friend Gwendolyn.
Posted by Dot Gill on 2011-08-23 07:14:23
We are praying for you all and sending all our positive thoughts for Gwendolyn. You all are truly amazing people!
Posted by Suzanne Perkin on 2011-08-23 12:25:05
Thinking of your family. Hoping Miss G bounces back soon!
Posted by emomatic on 2011-08-23 20:46:57
I feel so for Gwendolyn :( You are an incredible family and it is not only the awareness of a terrible, horrible, no-good disease that you share, but life lessons that enrich us and show us that each second of time together is a gift. As one of Miss G's fans the prayers will keep flowing in force.
Posted by jillian on 2011-08-24 06:25:53
Sending prayers!
Posted by Krista on 2011-08-24 06:32:32
Hello Victoria,Bill & Gwendolyn I hope Gwendolyn begins to feel better soon,she is one brave kid and you are inspirational parents,my love to you all xxx
Posted by Jess on 2011-08-24 13:28:27

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