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Heading To Stanford For Trilogy 100

May 13, 2010 by Victoria Strong
We'd be lying if we said everything is A-ok in the Strong household. It is not. And while we know we are in a very precarious situation with Gwendolyn, we are hopeful. We have a plan. Team Gwendolyn is in full force!

Gwendolyn had another episode last week. She didn't completely stop breathing, but she was on her way. She had been off the bipap for only 15 minutes while I moved her machines into her stroller. Fortunately, her pulse-ox was on and alarmed and I ran upstairs immediately. Her eyes were still open and she was blinking, but she was grey, struggling and her O2 registered at 71 -- the lowest we've ever seen her. I ran her downstairs where her bipap was already loaded into her stroller and once on it she, thankfully, was immediately much better. We have known she was not quite herself and have spoken with and seen her doctors multiple times last week. And obviously called them immediately after this episode. This is alarming for many reasons. But mainly because this is now showing that she is becoming weak and in need of more breathing support asap. She has never had an issue with breathing after such a short time. On top of all of this, she has a bladder infection and is cutting her incisors and molars, all of which create a lack of energy. But...she has had those things before...this is different. We have been anticipating this for a long time -- machine dependency brings a fear of the day when the machine isn't enough. And we have discussed options and scenarios with her doctors on many occasions. We have reached the limit of her current bipap and so we need to switch machines to meet Gwendolyn's needs. The good news -- amazingly good news -- is there is now a machine that is very well received by many SMA children - the Trilogy 100. It literally did not exist when Gwendolyn was diagnosed, but now many families begin their journey with this machine as it is much more sophisticated and is meant to be used for the long lengths she now needs breathing support. We are not worried about the machine -- we LOVE this new machine because it is giving us options. But we are worried about the transition. We are hopeful that because Gwendolyn isn't in the midst of an illness crisis, the transition will be seamless and no big deal. But, the reality is some children have not successfully transitioned, which leaves us in a place we can't even begin to think about.

We have been very anxious trying to locate a Trilogy, figure out how it will be paid for, and just hoping Gwendolyn could hang in there long enough. We always feel so grateful for the people who help us care for Gwendolyn, but this week they have all gone above and beyond. Her doctors have dropped everything to call or see us. Her night nurses have immediately switched into high gear each night. Her medical equipment company, LifeCare Solutions, literally pulled out all the stops, calling in favors and then driving all over California to get us the machine in record speed -- a machine they've never rented before. And the incredible Visiting Nurse and Hospice is once again not only giving us their full support, but making sure we have everything -- everything -- Gwendolyn needs and fighting for us if they have to. And all of this help means Bill and I can focus on Gwendolyn!

We are on our way up to Lucille Packard Children's Hospital/aka Stanford to meet with our amazing pulmonologist and her team. We may have to be hospitalized so Gwendolyn can be monitored over night. But, then again, knowing our strong little girl, this could be another, "Why are you so worried Mommy and Daddy? This is no big deal!" scenario. We are so, so hopeful and want to believe everything is going to be okay. But the reality that spinal muscular atrophy is stealing our daughter from us is all the more pronounced at times like this and it leaves us fractured and fragile.

Talk About It

I'm so sorry that Gwendolyn has been having these spells. Very scary! I hope her transition to the Trilogy is a breeze smile Kaitlyn recently switched to the LTV 1150 and she (and we) LOVE it!! I have never seen Kaitlyn so comfortable on a machine before. I will pray the same is true for Gwendolyn smile xoxo
Posted by Kimberley Hatchard on 2010-05-13 06:44:04
Sending prayers and eager to hear word that Gwendolyn sailed through the transition like the champ she is! There are no doubt a lot of busy little angels....
Posted by Helen Baldwin on 2010-05-13 06:58:54
sending our positive energy your way....thinking of you....praying for you....Miss G is one determined young lady just like her mommy and daddy....keep on fighting girl!! Thank you for keeping us updated!! Be well.... Lisa smile
Posted by Lisa Prokopetz on 2010-05-13 07:01:00
Praying for a smooth transition. Sending our continued love and prayers!!!!!
Posted by Margaret on 2010-05-13 07:57:04
Bless you three. Our son has a neuromuscular disease (from birth) that behaves very much like SMA. I've been watching your website and Gwendolyn with great interest. You are all doing such a fabulous job. My husband and I know the serious heartful cost of your lives and the great priviledge and joy that comes from loving Gwendolyn. We feel the same about our son. I'm sure you are working through all the practical matters of bi-pap just as intelligently as you are conducting the rest of your lives, but I've noticed one thing about Gwendolyn that you might want to ask your doctors if you haven't already. Her mask covers her nose and not her mouth and I'm wondering if she is capable of lip closure. If not, she is surely blowing out alot of air. She may, at this point, benefit from a full-face mask to increase pressures in her lungs. Just a thought. We lived in California from '96 to'04 on a ranch between Oxnard and Camarillo. Loads of fond memories from that time and area. Especially loved Santa Barbara. I'll be thinking of you three travelling up to Stanford for Gwendolyn's appointment. All the very best to you. Julia.
Posted by Julia Lattimer on 2010-05-13 08:58:18
Little g, I love you more than you know! Travel safely and transition quickly. I have a feeling you know exactly how to do it and the rest of us are the only ones who are worried. Show us all how it is done baby girl!
Posted by Aunt Kristen on 2010-05-13 09:50:24
I just want you guys to know that we are going through the EXACT same thing with Jonas right now. I understand completely what you are feeling. My prayers go out to you and especially Gwendolyn. Hopefully everything will be smooth. As always, we will be anticipating updates to see how things go.
Posted by Lindsey Coleman on 2010-05-13 10:32:27
Thinking of you all and praying for an easy transition...you are so right, if anyone can pull it off it is your sweet, STRONG little girl!! Love, hugs and strength to you Bill and Victoria as well, I can only imagine the fears these episodes and changes bring but know there are so many people sending you positive thoughts, energy and love. The 3 of you are truly amazing!
Posted by Emma on 2010-05-13 11:22:32
So sorry to hear about these scary spells. We're sending all of our positive energy and prayers your way so that Gwendolyn may transition easily and that the 3 of you will have many, many, many more healthy happy days together.
Posted by Kristen on 2010-05-13 11:36:52
You've got our thoughts and prayers down here in San Antonio. We love you, and miss you, and are constantly thinking about you. Go Team Gwendolyn! Love, Jon, Kelly, Camie and Alli
Posted by Jon G. on 2010-05-13 11:47:57
Praying for sweet Gwendolyn and hoping for the best....I just wish I could do more. If anyone can transition easily Gwendolyn can!
Posted by Misty on 2010-05-13 12:17:42
Sending love and prayers and praying for smooth transition and safe journeys. Love you all so much!!
Posted by Clare on 2010-05-13 12:26:00
I am so sorry to hear this news, but so thankful there is a new machine to turn to. Keeping you in our prayers and thoughts for a smooth transition into the triology. Also praying for safe travels there and home again. Love to you all, Mari
Posted by Thorney aka Mari on 2010-05-13 14:19:56
Hope everything goes well with your trip and transition to the Trilogy. We will be thinking of you and sending good thoughts your way!
Posted by Holly on 2010-05-13 15:36:35
Lord, please bless and keep little Gwendolyn safe, and please give her parents and family the strength and comfort they so desperately need right now. In Jesus precious name, Amen. {{{{{{{{HUGS}}}}}}}}
Posted by WWI Flying Ace on 2010-05-13 16:10:19
Praying that the transition is super smooth (I know it will be smile. Keeping Gwendolyn and both you and Bill in our hearts and our prayers.
Posted by Marilynn on 2010-05-13 17:02:07
Hope is all well. Have been thinking about you all day. The team wants you all to know that our hearts are with you.
Posted by Laura Haywood on 2010-05-13 19:17:44
You will be successful as Team Strong in this transition as with all the others. Of this I have no doubt. And this new breathing apparatus will open a new chapter - and the luxury of time to make a miracle happen. I always tell Lee - I'm expecting a Miracle here and I won't settle for less. XOX
Posted by Julie Brennan on 2010-05-13 20:10:36
I will be keeping Gwendolyn in my prayers and close to my heart (always). I can only imagine the anxiety you feel. I will pray for a smooth transition...
Posted by Sam on 2010-05-13 22:21:07
Hoping everything goes as perfect as can be for sweet little Gwendolyn. Sending my prayers for the best possible outcome. Bless all of you!
Posted by Jillian on 2010-05-14 19:58:59
Keeping you all in my thoughts and prayers. I hope that Gwendolyn is transitioning onto the her new supports well. So glad that you feel in such good hands, you need all your energy for sweet Gwendolyn now. Praying for God's peace that passes all understanding right now as they work out all the kinks with this new machine. Blessings
Posted by Penny on 2010-05-15 07:39:03
Thinking positively about your whole family! What a stressful time this must be, and again, you bravely share it with all of us. I know that must be hard, but it has raised my whole family's awareness about how precious each and every moment is and how fragile we each are balanced here on this earth. Thanks again, I know it's a very hard path that you are walking, and I send lots of love to all of you. Christy Pinuelas Heather's friend Camarillo
Posted by Christy Pinuelas on 2010-05-15 17:35:14
I too am praying the Trilogy is working. I am glad to hear they have something new that may help!!!
Posted by Devon on 2010-05-16 16:21:08
[...] we go home, she improves, we stop worrying… well less. But now…it is different. In May we were able to switch to the Trilogy with success (Thank God!), but it came with the knowledge [...]
Posted by Some Worry Gwendolyn Strong | Gwendolyn Strong on 2010-12-13 08:27:43

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