Great News

December 13, 2010 by Victoria Strong

Good news -- GREAT news! Gwendolyn's appointment today went really well. All things considered, Dr. Yuan is actually really pleased with how Gwendolyn looks and sounds. Her labs came back excellent. Her x-ray was fabulous. And overall she is in tip-top shape. WHEW! We talked to Dr. Yuan for hours and basically what it seems to boil down to is adjusting her calories a bit (adding in some protein, fat, and fluid) and changing her busy schedule a bit to allow for more rest. The latter is going to be the biggest challenge because, well, Gwendolyn is a three-year-old Miss Bossy Pants and thinks she no longer needs a nap. But this news is huge! Huge! Huge! Huge! We were feeling very heavy and worried that a very different conversation may take place. And the relief we are feeling right now is unmatched. And in unexpected news we were actually able to LOWER her settings slightly! THAT IS A FIRST!!! From listening to her and watching her breathing, Dr. Yuan played with the BiPap settings a bit and Gwendolyn seems to be doing really well with this slight change. We will watch her closely and can always go back up if needed. But this change was beyond music to our ears!

A) We love our sassy fighter girl and are going to work balancing her need for stimulation, experiences, and excitement with her need for rest. Hoping Miss I'm-So-Big-For-My-Britches cooperates smile All of this is a typical three-year-old issue (I know many moms of three-year-olds can attest to this), but for Gwendolyn giving up her nap is simply not an option. She needs rest to breathe, so now we just need to tell her three-year-old self to talk to her SMA self and work it out. This may mean cutting a day of preschool or perhaps leaving slightly early so she no longer takes mini naps in the car or changing some therapy times. And with an upcoming "Winter Break" from school and therapy we are hoping we can create Nap Boot Camp! smile

B) We LOVE Dr. Yuan. Her attitude, her support, her kindness are incredible. She listens. She thinks outside the box. She never jumps to conclusions. She always, always believes that "Gwendolyn is Gwendolyn" and each of us (regardless of SMA) is unique and, therefore, cannot be treated with one set of rules. And she wants the best for our little girl. We love her and Gwendolyn does, too.

C) Gwendolyn is so BRAVE -- our little Super Girl! She is so trusting. She is so willing to go along with things. And she is so forgiving. She twisted and turned like a champ for her x-ray. And she was our sweet ever-so-brave biscuit getting her blood drawn that took: two arm attempts, the special vein finder machine, 30 minutes of fishing with a needle, a very agitated Daddy, a very frustrated Dr. Yuan, and, yet, Gwendolyn toughed it out with only Mommy hand holding and promises of stickers and a new book. And Gwendolyn's tears quickly dried and her frowns turned to beams when Dr. Yuan gave her special sparkly princess stickers and a special Snow White book for being so brave during her blood work.

Thank you all so, so much for your thoughts, messages, support, and love. We could feel the goodness and it helped give us courage today -- and we needed it! We are always hopeful, but the reality of SMA is not always so kind. Super Girl is now snoring away peacefully and we are settling down to a good bottle of wine and toasting to a good day... a very, very good day!!!

Talk About It

Is there any way to give her a little melatonin to help her sleep during naptime-through her G-tube or something? It is all natural and my own children take it each night to help calm them at bed time. I obviously do not know how it affects SMA issues but thought I'd suggest it anyway. As a mother of three I can definitely commiserate with that beween stage where these little people still need naps but they are too stubborn to know it! smile Good luck with "Miss Sassy Pants" and sweet dreams Gwendolyn!
Posted by misty on 2010-12-13 20:30:17
Whoo hoo!!!!! Thats what we wanted to hear! Way to go Gwendolyn!
Posted by The Marshalls on 2010-12-13 20:36:16
Hooray! What a happy update! Love it. And Dr. Yuan sounds like a DREAM. Good for you for finding her. xo
Posted by Cass on 2010-12-13 20:45:47
So elated to hear the excellent news. Miss G. really is a brave little soul. Will keep on praying for you all.
Posted by Carol on 2010-12-13 21:21:23
I am so happy today went well. That is the best Christmas news! Gwendolyn is a brave, precious, growing girl! I completely get it....I understand Gwendolyn's desire to be awake and enjoying the world around her. Since the summer I have had to use my BiPap from 12 to 14 hours a day..leaving me with very little time doing the things I love like playing on my computer and watching tv. Leaving home and getting away from BiPap is sometimes battery I go solo. You will find the middle ground and Gwendolyn will be just fine! Continued prayers and hugs!!
Posted by Tammy Duke on 2010-12-13 21:22:12
Oh good, good! She is so special, I just love her! It makes me so happy to see her and see all that she does. Stay strong Gwendolyn, but take those naps! I would always try to make Jonas take naps and listening to him talk for an hour instead of napping. Silly kiddos! Keep it up!
Posted by Lindsey Coleman on 2010-12-13 21:22:29
I am SO happy for you and Gwendolyn that she is feeling better and doing so well. Thank goodness!
Posted by Rebecca Young on 2010-12-13 21:30:16
So glad your appointment went so well. Hope to see you and Gwendolyn at preschool on Thursday, if she's feeling rested enough. smile Let us know how we can support and help!
Posted by Jeanette H. on 2010-12-13 22:05:17
Yahooo! So happy today was such a good day! XOXO!
Posted by Theresa Portugal on 2010-12-13 22:11:08
Wonderful news!
Posted by Mark on 2010-12-13 22:44:36
This is the first time I have written to you but I have been following your story for quite a while. I am so entranced by Gwendolyn! She is simply amazing! One thing you mentioned struck a memory with me. The short nap in the car, oh my! My daughter would nap for 5-10 minutes and think she had taken a 3 hour nap! And so cranky by dinnertime. Do your best to keep her awake in the car (I'm sure you know this) Kids are alike in so many ways and you are so right about the attitude of three year olds, a real independent streak sets in! My thought are with you.
Posted by Christi on 2010-12-13 22:51:52
ahhhhh......what an amazing Christmas miracle! Especially the lowering of her settings - unbelievable!! Miss G is truly a miracle. Thank you for letting us know - a huge sigh of relief and thankfulness......
Posted by Sheri on 2010-12-14 00:08:52
Fantastic news! Great job Gwendolyn, Mommy and Daddy (and Dr. Yuan)!
Posted by Meri on 2010-12-14 01:06:15
YAY! YAY! YAY!!!!!
Posted by Audra Butler on 2010-12-14 04:31:13
What a terrific way to start another frigid day here!!! Woo hoo to the entire appointment! I imagine that if Miss G knew it was either better napping or cutting preschool some, she might start snoring on the spot smile Yippee and big hugs to you all! 'Lucy'
Posted by Helen on 2010-12-14 04:40:22
Oh YAY!!!!!!!!!!! I too am SO relieved, and happy for you all!! What a trooper she is through it all - and you and Bill, too. So much love to the three of you. xoxoxoxo
Posted by Summer on 2010-12-14 05:16:54
Hooray! I'm so glad her fatigue seems to be attributable to 3 year old bossiness and not so much the progression of SMA! Both Sophia and Jacob were cranky non-nappers at this age. Special "only at rest time" books on CD by Jim Weiss often did the trick to get them to rest (and hopefully sleep!!!).. Much love to the three of you.
Posted by Margaret on 2010-12-14 06:13:36
Yes! That is the best news, I am so relieved. Thank you for stopping by, it totally made our day. Your gifts were very well received this morning:) Thank you again! Lots of hugs.
Posted by Cherisse on 2010-12-14 07:35:21
SO GLAD TO HEAR IT!!! YAY!!!!!! That's wonderful!!! LOL on the "I'm so big for my britches" and the "Miss Bossy Pants." Hilarious!!
Posted by Devon on 2010-12-14 07:44:09
So, so, so happy to wake up to this news!!!!
Posted by Teri Taylor on 2010-12-14 08:31:33
Wonderful news just in time for the holidays! I know it's hard to get toddlers to sleep, but my mom used to give me a "quiet time" with a timer and it was just understood with no option that I was to at least rest. 9 times out of 10 I did sleep eventually and I used this technique with my own kids. It gave me a couple of hours to get things done or rest myself. Good luck with the boot camp!
Posted by jillian on 2010-12-14 08:51:15
Doing the happy dance here for Miss G and of course you all! As for the nap .. fighting our little love as well.After 3 days of fighting her naps,crying,screaming and having nothing to do with it,I think she is letting me know she is done.But she,like Gwendolyn still needs it.I'll try again today but something tells me it is going to be a no go! Love to you all.
Posted by Zoey's mom on 2010-12-14 09:01:20
So so very happy to read the good report! YAY for Miss Gwendolyn!! Y'all continue to be in my prayers!
Posted by Kim on 2010-12-14 09:38:06
I am so glad to hear your good news! What a lovely Christmas present for your whole family! I know what it's like to have a "nap fighter" and the only advice I can give is to persevere and hope that she comes to understand that she needs it. You might want to try some calming music or even some tunes that she likes might help her relax. And if that fails...bribe her!!! Love to you all! Lisa xo
Posted by Lisa on 2010-12-14 12:24:52
Posted by Donna T on 2010-12-14 12:40:22
I'm so glad to be reading this piece of good news. I'm happy your appointment went well. Gwendolyn looks so adorable. Take care!
Posted by Meike on 2010-12-14 13:45:09
I read this with tears of joy, I am so happy that the doc thinks Miss.G is doing well-what a relief to you I know!! I can't believe you were even able to decrease her settings, that is awesome. I know what 3 year olds are like but I know once G sees that napping helps her she will come around-grumpily I am sure, but somewhat willingly in the end. You are always in my thoughts and prayers, hugs, Em
Posted by Emma on 2010-12-14 14:44:42
So happy for the good (GREAT!) news! Love y'all!
Posted by Kelly on 2010-12-14 15:28:56
enjoy the deserve it!
Posted by maggie on 2010-12-14 15:43:58
So so so so so glad to hear this news! I live in the 3-yr old world and sometimes you just have to get really creative......... Kendall's attempt to give up the nap was over ridden by getting white noise (ocean sounds) machine and blacking out her drapes..... she is now back to 3 hr naps and being a happy girl! The boys will be so excited to know that Gwendolyn's apointment went so well, we talk about your sweet girl everyday!
Posted by Penny on 2010-12-14 17:35:05
That is great news Victoria! I'm so happy for you and your family! If Gwendolyn doesn't want to nap, try promising her a surprise to be waiting when she wakes up. I do this occassionally with my son and a sticker, a book, a toy, etc. seems to work. It should work, at least temporarily. Good luck and congrats on the wonderful news! xo
Posted by Leslie on 2010-12-14 17:51:36
Yay! So happy to hear the great news! It just made my day! : )
Posted by Kristen on 2010-12-14 18:19:22
Lower bi-pap settings-- wow! So, so happy to read this update! Dr. Yuan sounds wonderful. Love, hugs, and happy holiday wishes to all three of you.
Posted by diane on 2010-12-14 20:21:39
I so very happy for this wonderful news. Now both (maybe all 3 of you)--take a nap! Ha!
Posted by karen on 2010-12-15 05:13:22
Such completely wonderful news -- I feel your joy! Stefanie
Posted by Stefanie on 2010-12-15 09:08:21
So glad to hear Gwendolyn's appointment went so well!
Posted by Mary on 2010-12-15 18:06:15
And isn't that her Disney "Aunt Kristen and Uncle Richard" T-shirt?? Must be lucky smile Love you g. See you in a week!
Posted by Aunt Kristen on 2010-12-17 21:35:55
What a blessing this news is. Keeping you in my prayers. Love, Mari
Posted by Mari aka "Thorney" on 2010-12-19 13:33:15
So glad to hear Gwendolyn's appointment went so well!
Posted by Nona Mills on 2010-12-22 12:46:49

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