Some Worry

December 13, 2010 by Victoria Strong
We are worried. We have been for a month now, but we keep hoping we will see improvement. We keep hoping we aren't seeing what we are seeing. Gwendolyn just isn't herself. She isn't sick. She wants to do and go and see, but her energy is low. She is not coming off bipap for very long. She is struggling to breathe without it. This isn't good.

Gwendolyn has had a pattern throughout her life. She does well for about six months and then she needs increased breathing support. We visit her pulmo, she increases her settings, we go home, she improves, we stop worrying... well less. But is different. In May we were able to switch to the Trilogy with success (Thank God!), but it came with the knowledge that increasing her settings was not infinite. In fact, there is little known about exactly how high we can go because the Trilogy is so new that it isn't yet known how high the machine can be used with a bipap mask. We have room now -- we think. But the reality is we are marching toward a limit and that kills us.

We are at Stanford now meeting with her pulmonologist. We are pretty certain our sweet little fighter will tolerate increased settings and we will once go home, see her improve, and we will stop worrying... a little. But we wish this were not our reality.

Talk About It

Hoping the news is good at Standford and Gwendolyn will improve. You are wonderful parents, if there is a way you will find it. Sending lots of healing and loving energy to all of you.
Posted by MT Grandma on 2010-12-13 08:53:42
My prayers to you little Gwendolyn, you are a fighter!
Posted by stephen taylor on 2010-12-13 08:56:45
Thinking of you, Bill and Gwendolyn. Sending good thoughts and positive energy!
Posted by Allison Wehrkamp on 2010-12-13 09:00:20
Our prayers are with you as always!
Posted by The Marshalls on 2010-12-13 09:03:04
surrounding you all with love, prayers, and positive thoughts ~ our little warrior princess will triumph once more!
Posted by Sheri on 2010-12-13 09:06:05
I hope that you can get things going on the right track with your appointment today. our prayers are with you.
Posted by Rebecah Ogden on 2010-12-13 09:12:52
We are sending you all our prayers that Miss G gets a new setting and does fine and can do very well for a long time on the new settings. Love that little blessing you have!
Posted by Lisa on 2010-12-13 09:20:57
Keeping Gwendolyn in our prayers. Hope your appointment goes well and she tolerates all the setting changes. Sending BIG HUGS!
Posted by Shellie Lopes on 2010-12-13 09:25:16
Prayers for all of you going up right now. Keep fighting Miss Gwendolyn!
Posted by Kim on 2010-12-13 09:26:12
Sweet Gwendolyn is in our prayers...Mom and Dad too!
Posted by Suzanne Williams, Erinne's Mom on 2010-12-13 09:28:31
We are thinking of you and sending our love and prayers! Megan and Justin
Posted by Justin Morseth on 2010-12-13 09:42:10
Sending love and prayers to your worried hearts.
Posted by Zoey's mom on 2010-12-13 09:54:33
My heart is breaking for you. My son, who has Down syndrome, is not able to use any machine to treat his severe sleep apnea. We too know there is a limit that the body can take. Praying for you that you will have more good days ahead!
Posted by Karen on 2010-12-13 09:59:12
Lots of love sent to you, Bill and of course Sweet Gwendolyn. I know there is nothing we can say to make things better but hope that our well wishes bring you some comfort!
Posted by Lisa on 2010-12-13 10:14:35
You are all in my thoughts and prayers as you deal with all of this. I know you are heading towards great days to come. She will pull through...she is the strongest little girl I have ever encountered. Much love and prayer coming your way.
Posted by Tara Smith on 2010-12-13 10:34:49
Posted by Jaime Gooden on 2010-12-13 11:13:37
Prayers for Gwendolyn:(
Posted by TJ Grindle on 2010-12-13 11:57:35
Although there is nothing 'we' can say to ease the worry, please know you are in our prayers, in our thoughts and we are sending you lots of love and strength. I hope the meeting goes well today and you find G is at a place once again which leaves you will less worry for a good long time! Hugs. Em
Posted by Emma on 2010-12-13 12:14:42
Adding my love, prayers, & support.
Posted by Kelly on 2010-12-13 12:22:21
Getty, Kate, and I are sending good thoughts your way. Hugs to you all and hoping for the best.
Posted by Mark on 2010-12-13 12:35:37
Thinking about you guys and saying a prayer for all of you.
Posted by Legally Fabulous on 2010-12-13 12:48:27
Thinking of you and hugs.
Posted by Devon on 2010-12-13 12:52:21
I am sending good thoughts your way. I know a 14 year old with SMA type 1 and she is on a ventilator. Can I just ask why you don't mention that when you speak of Gwendolyn's treatment? I'm just trying to learn a little more. Thank you.
Posted by Meghan Johnson on 2010-12-13 14:37:00
I just.....ugh. SMA is the cruelest thing I could ever think of. HUGS. I wish I could say more.
Posted by Corinne on 2010-12-13 15:10:20
thinking of you guys...good thoughts your way
Posted by maggie on 2010-12-13 15:41:57
Victoria, for you and Bill and Gwendolyn, for all of you and for every other family struggling with SMA, I wish it weren't your reality too. Sending you all love and good strong hugs.
Posted by Christina Bocek on 2010-12-13 16:09:36
Hoping and praying that G is back to her normal self really soon. She is always in my heart! Please give her a kiss from me!
Posted by Laurie Sore on 2010-12-13 16:14:52
Sending you hugs and prayers! I know there have been times where I wondered if Stella wasn't happy, only to have her snap out of it because of a diet change or vent setting change. Please know we send our love and positive thoughts that she will be herself real soon. If you guys ever feel a trach is in sight and want to chat about it, let me know. We were SO hesitant about it and drug our feet BAD but we are SO thankful we made that decision and not sure what we were scared of! It's been easier on all of us nd Stella nods when I ask her if she loves her trach more than the bipap. Hugs and love!
Posted by Sarah Turnbull on 2010-12-13 16:15:45
Love you guys, hang in there.
Posted by Dorothy Shuler on 2010-12-13 16:59:52
We are sending prayers for Miss Gwendolyn as well as for you and Bill. We hope you were able to get some great help from Dr. Y. If we can do anything for you, please let me know. Aaron sends kisses.
Posted by Meri Phelps on 2010-12-13 17:01:02
Sending you all so much love and positive are in my thoughts always. And a BIG hug and kiss to the amazing Miss G - I know she will come through this.
Posted by Summer on 2010-12-13 17:02:27
Sending all the positive energy I can and all of the love I have.
Posted by Audra on 2010-12-13 18:14:23
Saying prayers for Gwendolyn and all of you tonight! I wish that this were not your reality but please know that you are loved, loved loved. Gwendolyn has become the people's princess!
Posted by Kristen on 2010-12-13 18:24:43
It's been a while since my last visit to you Gwendolyn. And it's really a sad news to hear from your mom that you're not that okay these past few days. Get well soon Princess. We're all here praying for you. Hugs!
Posted by Jhari on 2010-12-13 19:13:26
Sending tons and tons of positive thoughts and energy your way. Praying that some new settings will help miss Gwendolyn feel better sooner! No one has more fight and strength that your amazing little girl......fighter is an understatement----Miss Gwendolyn is a WARRIOR!! be well...sending you many, many hugs! Lisa smile
Posted by Lisa Prokopetz on 2010-12-13 19:18:13
Oh you guys, I'm sorry you feel this way. It's not fair. You guys are on my mind a lot and we are sending our love and prayers!!
Posted by Lindsey Coleman on 2010-12-13 20:06:10
I am so sorry this is happening. I apologize for not responding sooner, but I have spent the last 10 days in the hospital and while I had my laptop I was too sick to pull it out of the carrier. My thoughts and prayers are with you all. --Love, Mari
Posted by Mari aka "Thorney" on 2010-12-19 13:22:03

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