tag:blogger.com,1999:blog-8613527581486082866.post4777970000219131937..comments2023-06-24T06:26:30.548-04:00Comments on DEIRDRE MEDINA's DIARY: A LITTLE MAGE in the FAMILY: Breathing BluesViernahttp://www.blogger.com/profile/03344026446892276772noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-8613527581486082866.post-84420411234238647722008-01-02T01:11:00.000-04:002008-01-02T01:11:00.000-04:00Hey Vierna! So glad you found your way over to our...Hey Vierna! So glad you found your way over to our blog - thought I'd post here again! There are some great resources out there for SMA families and we are more than glad to share our experiences with you. Emily is our second daughter with SMA, so we've been working the system for a while now. Feel free to contact us at your leisure!! nathan@hopeforemily.comNatehttps://www.blogger.com/profile/07015631742777447805noreply@blogger.comtag:blogger.com,1999:blog-8613527581486082866.post-10409126066866456212007-12-31T11:18:00.000-04:002007-12-31T11:18:00.000-04:00I wanted to tell you that I have a 9 month old dau...I wanted to tell you that I have a 9 month old daughter with SMA so I can also sympathize with the frustrations you are probably experiencing through the hospital. We spent our share of this year in the hospital trying to get things worked out for Stella. Your comment about SMA being a "death sentence" feels that way before you get some good help for your little one. I saw Nate's posting and wanted to encourage you to look at the sites and you will find that there are things you can do for your little miracle. When we were first told of Stella's diagnosis when she was just several weeks old, they said that she would live weeks or a few months. She's 9 months old and I can say that with some good therapies with her Bipap and CoughAssist, she seems to be doing pretty well. Yes, our lives have changed but we cannot imagine life without out daughter in it, so we are willing to try. <BR/>Would your doctors be willing to correspond with some of the experts listed on the SMA websites? These doctors would be able to explain when and how to know how much O2 is necessary (you don't want too much) and could explain the benefits of the equipment I mentioned. Best of luck to you guys! We are thinking of you and will check back in.CureSMA4Stellahttps://www.blogger.com/profile/04894468106949266315noreply@blogger.comtag:blogger.com,1999:blog-8613527581486082866.post-74475755484518268032007-12-31T11:16:00.000-04:002007-12-31T11:16:00.000-04:00My name is Shannon and I have a daughter who is SM...My name is Shannon and I have a daughter who is SMA type 1, we live in Hartord WI in the USA and we see a doctor who specializes in SMA here in Madison WI, her name is Dr. Mary Schroth. I know she is on vacation this week, but I am sure she would be more than willing to talk to you and your daughter's docs. My daughter was diagnosed at 6 weeks of age, we knew something was wrong by 4 weeks. She is now 15 months old. She is not on oxygen. She lives at homewith her daddy, me and her big sister (sma free). We have a lot of medical equipment in the house for her (a cough assist machine, a bipap machine, a nebulizer machine, a suction machine, and oxygen tanks for emergencies). But once you have been trained properly on how to use it all, it becomes second nature and we love having our little princess here with us. We do the things a normal family does, we go to the zoo (my daughter has a wheelchair that allows her to lay flat or sit up- Easy S Max by Exomotion) we go for walks, We play with adapted toys, etc. I know things are so hard in the beginning with this diagnosis, but I promise, it does get better! I highly reccomend checking out the sites that my friend Nate posted in his comment. SMA support hasa chat group you can join and talk with other SMA parents and get important inormation about treatment, nutrition, supplies, doctors, etc. I truly credit this group of wonderful people to my daughter still being alive, I have learned so much from them! Good luck, give your pretty DeeVa hugs and kisses, we are thinking of her! Please feel free to contact us, my e-mail is shay@justintime.org <BR/><BR/>Shannon Kuester<BR/>Mom to Haley (age 3) and Addison (15 months SMA type 1shannonkuesterhttps://www.blogger.com/profile/08077520878746123080noreply@blogger.comtag:blogger.com,1999:blog-8613527581486082866.post-61736856676434617652007-12-31T09:55:00.000-04:002007-12-31T09:55:00.000-04:00I enjoyed your writing about Deedee's situation. ...I enjoyed your writing about Deedee's situation. I too must suffer through a life of SMA as I am the father of one normal child and two girls afflicted by SMA, one of whom has already passed away. <BR/><BR/>I am intrigued by a couple of things you wrote about, the first being the "fish bowl." Never heard of that treatment before. :/ Second, there are many resources out there for SMA families and a few incredible hospitals as well. I am not familiar at all with one in Tampa, but I am VERY familiar with a few others. Have you guys found information at www.fsma.org, www.smasupport.com, or www.fightsma.org yet? <BR/><BR/>I also invite you to visit my daughter's site if you up for a read (I'm also an avid blogger!) at www.hopeforemily.com. There are some great support networks out there, so feel free to reach out to them. <BR/><BR/>Peace - NateNatehttps://www.blogger.com/profile/07015631742777447805noreply@blogger.com