tag:blogger.com,1999:blog-3653311916914424941.post7211824233476157620..comments2023-11-03T06:18:34.340-04:00Comments on The Miracle of More: When It Gets Hard--UPDATEBlessed Mom of Four AND Morehttp://www.blogger.com/profile/03552944942986801747noreply@blogger.comBlogger18125tag:blogger.com,1999:blog-3653311916914424941.post-5922061117965888102011-01-14T15:02:37.970-05:002011-01-14T15:02:37.970-05:00big, big hugs... without saying too much, I can sa...big, big hugs... without saying too much, I can say that I know exactly how you are feeling... its scary being the mama, but thankfully our children have us... love yallAddie Talley, Photographerhttps://www.blogger.com/profile/01024206808003120158noreply@blogger.comtag:blogger.com,1999:blog-3653311916914424941.post-85536636897923168712011-01-08T21:09:15.790-05:002011-01-08T21:09:15.790-05:00You know I cried reading this. I'm assuming I ...You know I cried reading this. I'm assuming I also know the child you were speaking of - really well. We have a very strong desire here for underwear, and it seems to get harder all the time. We've got tests coming up Jan. 25th, hoping for some answers. Nice to realize how truly rare we are. I seem to be struggling alot lately with this - "And, you know what my job is? To make sure she remains proud of herself. Teach her that she was fearfully and wonderfully made. To hold her hand when she is afraid. To be the wind beneath her wings.<br />And, that is my privilege." What he is going through seems to have done a real number on us since his surgery in June. (Never mind everything else that's going on.)<br /><br />Just pray for us sister.<br />Love ya,<br />TheresaTheresahttps://www.blogger.com/profile/12796701536913689324noreply@blogger.comtag:blogger.com,1999:blog-3653311916914424941.post-48506579315682588592011-01-08T20:06:59.580-05:002011-01-08T20:06:59.580-05:00Great post Robbie, and great attitude! What a spe...Great post Robbie, and great attitude! What a special family God gave this sweet girl.Janethttp://www.5hurleykids.blogspot.comnoreply@blogger.comtag:blogger.com,1999:blog-3653311916914424941.post-2222020616498022502011-01-08T16:50:23.394-05:002011-01-08T16:50:23.394-05:00Wonderful post Robbie...I am SO GLAD you shared it...Wonderful post Robbie...I am SO GLAD you shared it. Sweet Ellie blesses the socks off you just as your family blesses her! Sweet, sweet girl!Jill from Killeny Glenhttps://www.blogger.com/profile/13639521470702814007noreply@blogger.comtag:blogger.com,1999:blog-3653311916914424941.post-75707717098845767082011-01-07T22:19:30.661-05:002011-01-07T22:19:30.661-05:00Did I ever mention that it's unclear what Arie...Did I ever mention that it's unclear what Arielle's initial problem was that created her bladder problem. I was told that she may need to go back on a cathedar when she gets home. I really don't know what to expect. I'm praying for panties for Ellie. I totally understand that momma's heart to want to see your child's dream come true. Love you sister.Terryhttps://www.blogger.com/profile/01377382094942924170noreply@blogger.comtag:blogger.com,1999:blog-3653311916914424941.post-32257748823135468662011-01-07T21:40:57.462-05:002011-01-07T21:40:57.462-05:00we are seeing Susan on Monday for our yearly check...we are seeing Susan on Monday for our yearly check up! i stumbled on your blog from the SB yahoo group. SMALL world!<br /><br />we are getting second opinions on her back though as i haven't been impressed with our neurosurgeon.<br /><br />you can find us here:<br /><br />www.hearmorethanthis.blogspot.com<br /><br />off to read more of your site.kitchuhttps://www.blogger.com/profile/03907460384010952009noreply@blogger.comtag:blogger.com,1999:blog-3653311916914424941.post-61902679248946721942011-01-07T17:38:37.686-05:002011-01-07T17:38:37.686-05:00Praying for you and Ellie! Love you, sister!Praying for you and Ellie! Love you, sister!Anonymoushttps://www.blogger.com/profile/04310880968344923585noreply@blogger.comtag:blogger.com,1999:blog-3653311916914424941.post-50954923507253516972011-01-07T11:29:59.252-05:002011-01-07T11:29:59.252-05:00I left you a long note on the SB Yahoo group, and ...I left you a long note on the SB Yahoo group, and I would be glad to talk to you, Robbie. Ruthie also has only one kidney, and, yes, she and Abby have had this specific surgery. Because of reflux, it was important that Ruthie's be done sooner rather than later. In Abby's case, we decided that since it would have to be done in the next few years, it was better to just get it done. Quite frankly, we also had a deep fear of Obamacare and what would and would not be considered essential surgeries. To us, it was just not worth taking the risk of waiting. Please contact me if you ever want to talk by phone, or just feel free to email me. I think you have my email address, but otherwise, it is on the yahoo group site.<br /><br />Blessings to you,<br />~LindaLindahttps://www.blogger.com/profile/03073851327628902706noreply@blogger.comtag:blogger.com,1999:blog-3653311916914424941.post-88167180573051837992011-01-07T07:08:53.074-05:002011-01-07T07:08:53.074-05:00love, Love, LOVE you dear friend! We're prayi...love, Love, LOVE you dear friend! We're praying for your precious family!jasnjojhttps://www.blogger.com/profile/17179550260183296807noreply@blogger.comtag:blogger.com,1999:blog-3653311916914424941.post-10614749041965177252011-01-07T06:36:02.147-05:002011-01-07T06:36:02.147-05:00We just returned home with a 7 year old who has SB...We just returned home with a 7 year old who has SB and is also incontinent. I have loved her since way before we knew her SN, and couldn't imagine her not being our daughter. Your post touched me, and I will pray for your Ellie, and your family, and know for sure God does indeed have a special plan for your very special girl!Bobby and Reginahttps://www.blogger.com/profile/05662440064344833869noreply@blogger.comtag:blogger.com,1999:blog-3653311916914424941.post-35012060511596244292011-01-07T00:34:01.890-05:002011-01-07T00:34:01.890-05:00I know just how you feel with the panties and stuf...I know just how you feel with the panties and stuff. Madi is much younger, so it doesn't bother her as much, but I switched to really cute training pants with enough absorbency to catch any "spills" she has between cathings. She really loves them! We go in for her big tests next week. I know I will feel the exact same way you do if the results aren't good. I will keep you in my prayers, and we would appreciate yours too!Jamiehttps://www.blogger.com/profile/01007178188240647348noreply@blogger.comtag:blogger.com,1999:blog-3653311916914424941.post-39681324891163122022011-01-07T00:13:43.482-05:002011-01-07T00:13:43.482-05:00I didn't think of panties with a pad in them -...I didn't think of panties with a pad in them - what a good idea. I have been thinking of how I can change my Sleep Dry Briefs pattern for bedwetters to a pretty still-absorbent enough pair of panties.<br /><br />How much absorbtion does your daughter need? Does she soak a pull ups a few times a day or use one to catch trickles and overflow? I'm sorry I don't know enough about spina bifida, but I've sure been educating myself about bowel management training so it shouldn't be much of a jump for me.<br /><br />I'd love to work with you to design something your daughter would be happier in. It can even be a hybrid thin panty with attached thin waterproof layer with a disposable pad inside.<br /><br />What do you think?<br /><br />Meanwhile, I'm so glad to hear that the One and Only Kidney is fine. My heart goes out to you because we all know that psychological and emotional health are as important as physical health.Khttps://www.blogger.com/profile/07033823622722768455noreply@blogger.comtag:blogger.com,1999:blog-3653311916914424941.post-1115565738377397552011-01-06T23:40:28.714-05:002011-01-06T23:40:28.714-05:00Robbie,
You have touched my heart once again...yo...Robbie,<br /><br />You have touched my heart once again...you really are the hands and feet of Jesus...so precious. Ellie is beautiful inside and out. I pray God's richest blessings on her and on your sweet, sweet family.<br /><br />Susan E.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3653311916914424941.post-18020038712679411332011-01-06T23:28:25.841-05:002011-01-06T23:28:25.841-05:00Robbie,
I'll be praying for you and your beau...Robbie,<br /><br />I'll be praying for you and your beautiful Ellie. <br /><br />MachellMachellhttps://www.blogger.com/profile/04425519701287289788noreply@blogger.comtag:blogger.com,1999:blog-3653311916914424941.post-76095576684273339022011-01-06T23:28:01.685-05:002011-01-06T23:28:01.685-05:00Robbie,
I'll be praying for you and your beau...Robbie,<br /><br />I'll be praying for you and your beautiful Ellie. <br /><br />MachellMachellhttps://www.blogger.com/profile/04425519701287289788noreply@blogger.comtag:blogger.com,1999:blog-3653311916914424941.post-62752075796341297022011-01-06T22:08:43.714-05:002011-01-06T22:08:43.714-05:00Extra hugs and prayers for you and your sweet Elli...Extra hugs and prayers for you and your sweet Ellie.Musings from Kim K.https://www.blogger.com/profile/09125473702962679391noreply@blogger.comtag:blogger.com,1999:blog-3653311916914424941.post-6253792836838929042011-01-06T21:54:48.853-05:002011-01-06T21:54:48.853-05:00I understand, Robbie... Katelyn is nearly 5 and st...I understand, Robbie... Katelyn is nearly 5 and still isn't completely dry. Cathing helps, but not enough. We'll be discussing surgery as she gets older... for now, she wears an incontinent pad in her undies, and that (along with cathing)helps enough to get out of the pull-ups. We are looking at possible bowel surgery down the road as well... it's all scary, but God will see us all through these obstacles!!!! Hugs!Nicolehttps://www.blogger.com/profile/04124998869768856332noreply@blogger.comtag:blogger.com,1999:blog-3653311916914424941.post-66961786785653435712011-01-06T21:49:18.011-05:002011-01-06T21:49:18.011-05:00Robbie, I will keep you and your girl in my prayer...Robbie, I will keep you and your girl in my prayers. This was a beautifully written post.<br /><br />Jill GJill and Rickhttps://www.blogger.com/profile/03403601508893204416noreply@blogger.com