# My baby girl has Spinal Muscular Atrophy (SMA) **URL:** \ **Category:** Miscellaneous and Personal Stuff I Must Share\ **Created:** [July 18, 2010, 3:17pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126 "2010-07-18T15:17:44Z")\ **Posts on this page:** 20\ **Page:** 19
**Author:** ![anyrose](https://avatars.discourse-cdn.com/v4/letter/a/54ee81/32.png) [@anyrose](https://boards.straightdope.com/u/anyrose)\ **Post date:** [August 12, 2010, 7:56am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/361 "2010-08-12T07:56:37Z")
> [@Bearflag70](#): > > > [@Bearflag70](#): > > > > Anyway, please look at the caringbridge site soon. Our photographer is a college girls’ volleyball player, and she made a team poster to support our little girl. I must say the poster is freaking **breathtaking**! > > We have some new photos up on caringbridge photo section if you’re interested. please repost the caringbridge link - I can’t find it in the thread ---
**Author:** ![kambuckta](https://avatars.discourse-cdn.com/v4/letter/k/53a042/32.png) [@kambuckta](https://boards.straightdope.com/u/kambuckta)\ **Post date:** [August 12, 2010, 8:20am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/362 "2010-08-12T08:20:30Z")
[Caringbridge](http://www.caringbridge.org/visit/gettystorm) ---
**Author:** ![Mama\_Zappa](https://avatars.discourse-cdn.com/v4/letter/m/71e660/32.png) [@Mama\_Zappa](https://boards.straightdope.com/u/Mama_Zappa)\ **Post date:** [August 12, 2010, 2:39pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/363 "2010-08-12T14:39:22Z")
Re constipation: You can add some baby-food prunes to her formula (doc permitting obviously) which helps a lot - we had to do that with **Dweezil** when he was in the early days of eating solids. This was even when breastmilk was forming the bulk of the rest of his diet, to illustrate how constipating that cereal can be (constipation is rare in breastfed babies). Health insurance: If baby is already covered, then when you switch jobs there should be no issues with pre-existing conditions. I do understand the frustration that the health insurance is tied to the job and there’s no affordable alternative for your situation :(. ---
**Author:** ![MoodIndigo1](https://avatars.discourse-cdn.com/v4/letter/m/e8c25b/32.png) [@MoodIndigo1](https://boards.straightdope.com/u/MoodIndigo1)\ **Post date:** [August 14, 2010, 1:27am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/364 "2010-08-14T01:27:37Z")
In the latest journal entry, Kate mentions your baby getting frustrated at holding objects. I just met my grand-niece Coralie who was 4 months and 3 weeks exactly at the time, and she seemed to be having the same kind of difficulty in grasping and holding on to an item. Of course, her intention was for the object to reach her mouth, but she almost invariably failed and got frustrated/angry and ended up chewing her fingers. So, in that respect, Getty seems to be holding her own. I have to confess that I smiled at the thought of her playing with her tongue, that is too cute! ---
**Author:** ![Soft\_Touch](https://avatars.discourse-cdn.com/v4/letter/s/898d66/32.png) [@Soft\_Touch](https://boards.straightdope.com/u/Soft_Touch)\ **Post date:** [August 14, 2010, 4:26am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/365 "2010-08-14T04:26:41Z")
They make these little [wrist rattles](http://www.amazon.com/Lamaze-Garden-Wrist-Rattle-Finder/dp/B000I2Q0C2/ref=sr_1_1?ie=UTF8&s=toys-and-games&qid=1281759734&sr=8-1) that have a velcro strap. I think they’d be light enough for your owl to bring to her face and she won’t get frustrated, because she can’t drop them (though she may get frustrated because she can’t drop them! But it seems like she’s got an awfully sweet disposition.) ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [August 14, 2010, 3:00pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/366 "2010-08-14T15:00:58Z")
Please light a candle tonight at 8 pm your local time in honor of those affected by and lost to Spinal Muscular Atrophy. August is SMA Awareness Month and the 2d Saturday is the annual candle lighting event. Thank you! ---
**Author:** ![FriarTed](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/friarted/32/1052_2.png) [@FriarTed](https://boards.straightdope.com/u/FriarTed)\ **Post date:** [August 14, 2010, 3:06pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/367 "2010-08-14T15:06:41Z")
I’ll be lighting one in spirit- won’t be able to do one actually. I saw an announcement two days ago about this being SMA Month & thought how strange the timing is. I’d never heard of it until you started this thread. And of course, Hugs & Prayers for the Little Owl! ---
**Author:** ![FriarTed](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/friarted/32/1052_2.png) [@FriarTed](https://boards.straightdope.com/u/FriarTed)\ **Post date:** [August 14, 2010, 3:13pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/368 "2010-08-14T15:13:04Z")
When you can get around to it, could you put some of her videos up on Youtube or somewhere- just so we can fall in love with her a bit more? ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [August 14, 2010, 3:20pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/369 "2010-08-14T15:20:46Z")
> [@FriarTed](#): > > When you can get around to it, could you put some of her videos up on Youtube or somewhere- just so we can fall in love with her a bit more? We have been taking some video. We’ll post it soon and link to it. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [August 14, 2010, 3:57pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/370 "2010-08-14T15:57:06Z")
[gettyowl](http://www.youtube.com/user/gettyowl#p/a) on youtube ---
**Author:** ![FriarTed](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/friarted/32/1052_2.png) [@FriarTed](https://boards.straightdope.com/u/FriarTed)\ **Post date:** [August 14, 2010, 4:19pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/371 "2010-08-14T16:19:56Z")
> [@Bearflag70](#): > > [gettyowl](http://www.youtube.com/user/gettyowl#p/a) on youtube OMG! Brain exploded from The Cute! Thank you! ---
**Author:** ![Lissla\_Lissar](https://avatars.discourse-cdn.com/v4/letter/l/8491ac/32.png) [@Lissla\_Lissar](https://boards.straightdope.com/u/Lissla_Lissar)\ **Post date:** [August 14, 2010, 5:09pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/372 "2010-08-14T17:09:02Z")
Dunno if you’ll like this or not, but my husband has been getting our two-year-old to pray for your little owl every night, in his bedtime prayers. ---
**Author:** ![missred](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/missred/32/14096_2.png) [@missred](https://boards.straightdope.com/u/missred)\ **Post date:** [August 14, 2010, 7:29pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/373 "2010-08-14T19:29:00Z")
Won’t be able to light an actual candle, but will light one in spirit for LittleOwl and everyone else affected by SMA. ---
**Author:** ![overlyverbose](https://avatars.discourse-cdn.com/v4/letter/o/9dc877/32.png) [@overlyverbose](https://boards.straightdope.com/u/overlyverbose)\ **Post date:** [August 14, 2010, 7:34pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/374 "2010-08-14T19:34:30Z")
> [@Bearflag70](#): > > [gettyowl](http://www.youtube.com/user/gettyowl#p/a) on youtube She’s such a sweetheart! I’ve been meaning to tell you - she has the most beautiful mouth I’ve ever seen (yes, I know that’s probably weird, but it’s gorgeous). ---
**Author:** ![MsWhatsit](https://avatars.discourse-cdn.com/v4/letter/m/eb8c5e/32.png) [@MsWhatsit](https://boards.straightdope.com/u/MsWhatsit)\ **Post date:** [August 14, 2010, 7:40pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/375 "2010-08-14T19:40:26Z")
Unbelievably cute baby + helium balloons = total cuteness overload. ---
**Author:** ![whiterabbit](https://avatars.discourse-cdn.com/v4/letter/w/cab0a1/32.png) [@whiterabbit](https://boards.straightdope.com/u/whiterabbit)\ **Post date:** [August 15, 2010, 3:43am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/376 "2010-08-15T03:43:04Z")
_jaw drops_ Your little owl is a stunningly beautiful baby – the pics are beautiful, but seeing her in action is something else again! She is _gorgeous!_ She’s getting to a fun age, too, midway through that first year babies are such a blast because they’re showing their personalities. I am _so_glad you’ve connected with a support group. Get everything you can from them, that’s what they are there for. They know about the path your family is heading down, and about the various and likely twists and turns that are ahead. Such information is unbelievably valuable. Many more hugs to you and all of her family! ---
**Author:** ![Gestalt](https://avatars.discourse-cdn.com/v4/letter/g/90ced4/32.png) [@Gestalt](https://boards.straightdope.com/u/Gestalt)\ **Post date:** [August 15, 2010, 3:56am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/377 "2010-08-15T03:56:38Z")
I love all the pictures of little Getty on the caringbridge site . . . but my favorite has to be where you and your wife are kissing. Getty is like, “hmm, mommy and daddy are doing something strange . . . but more important than that, MOMMY HAS A THUMB! Must investigate immediately.” Keeping you in my thoughts, **bearflag** ---
**Author:** ![dada2fish](https://avatars.discourse-cdn.com/v4/letter/d/ccd318/32.png) [@dada2fish](https://boards.straightdope.com/u/dada2fish)\ **Post date:** [August 15, 2010, 4:08am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/378 "2010-08-15T04:08:28Z")
Seeing her with those balloons and watching you work her little leg. A little lump in the throat there. She’s even more adorable on video and lucky to have you two as parents. ---
**Author:** ![MoodIndigo1](https://avatars.discourse-cdn.com/v4/letter/m/e8c25b/32.png) [@MoodIndigo1](https://boards.straightdope.com/u/MoodIndigo1)\ **Post date:** [August 15, 2010, 5:52am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/379 "2010-08-15T05:52:35Z")
> [@MissSwitac](#): > > Seeing her with those balloons and watching you work her little leg. A little lump in the throat there. She’s even more adorable on video and lucky to have you two as parents. Same here. At first, I was surprised that her legs were moving so much, then I saw your hand working her little leg and got a tear in my eye for what I know is a gesture of love. Your baby seems contented, happy, even. She’s the sweetest baby ever. I’m looking forward to hearing her “Ernie” laugh. 🙂 I lit a candle today at 8:00 p.m. My husband had fallen asleep, but my two cats were intrigued. \ ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [August 15, 2010, 6:06am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/380 "2010-08-15T06:06:52Z")
Thank you. [Getty munches on her paci](http://www.youtube.com/user/gettyowl#p/a/u/1/wkRfoHuiJ0Y) Getty [giggles a little](http://www.youtube.com/user/gettyowl#p/a/u/0/b7CKcArjXQo) like [Bert](http://www.youtube.com/watch?v=-FivSSt-plg&feature=related) [Previous page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=18) [Next page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=20)