new to site! i have a daughter 4 months L1-L2

[beckas mom!]

Hey!!! My name is Lindsay I am 20 years old I had my daughter in April of 2010. She is the sweetest baby I know!!! Im sure everyone says that lol but she smiles all the time at anyone and everyone!!! She has myelomeningocele L1-L2 area with hydrocephalus if anyone can message about their children and where they are in the first year or give advice I would greatly appreciate it!!!!

[babybsmom]

Hi beckas mom, I have a 7 1/2 month old son whith S1-S2 myelo, hydro with shunt. He, too, is the sweetest baby...I'm glad you have found this site. It is very helpful. Fee free to ask anything or just vent. by the way, does your daughter have a shunt? does she have leg movement?

[beckas mom!]

Hi beckas mom, I have a 7 1/2 month old son whith S1-S2 myelo, hydro with shunt. He, too, is the sweetest baby...I'm glad you have found this site. It is very helpful. Fee free to ask anything or just vent. by the way, does your daughter have a shunt? does she have leg movement?
Yes she has a shunt!! She has leg movement also she rolled over a few times belly to back it was on my bed tho so I guess that helped her out alot lol and her left leg is stronger than her right both move and she stretches them out at night before she goes to sleep!!! Do u cath your son? And are u on facebook?

[ainemc]

Hey Lindsay,
Welcome to the group! I'm Aine, i'm 22 and from Belfast in Ireland and I have a little girl called Caitlin who is 8months old, and has sb and hydro. She is right on track developmentally, she is always smiling and is a very happy baby. She rolls (though she hates rolling and will only do it when she's left alone!), and she started to sit up around month ago. She is making all sorts of cute sounds like mamama and bababa, and is really just like any other "normal" baby!
Glad you found us :) It's a great site. Were r u from?

[babybsmom]

My son, too, has a stronger left leg than his ight. He can move both, but prefers the left. He has been rolling belly to back and just recently back to belly. I do have a facebook, [share private information by private messaging].

Right now, we do not have to cath him. I hope that he proves to be more of a miracle and never has to, but if we do, we do. I'm grateful for all that he can do that the dr's said he wouldn't.

[Dodger67]

Welcome! :happy065:

[beckas mom!]

Hey Lindsay,
Welcome to the group! I'm Aine, i'm 22 and from Belfast in Ireland and I have a little girl called Caitlin who is 8months old, and has sb and hydro. She is right on track developmentally, she is always smiling and is a very happy baby. She rolls (though she hates rolling and will only do it when she's left alone!), and she started to sit up around month ago. She is making all sorts of cute sounds like mamama and bababa, and is really just like any other "normal" baby!
Glad you found us :) It's a great site. Were r u from?
I am glad I found it too!!! I am still trying to figure it all out and I'm on a blackberry so its complicated.but I'm from Mississippi in America lol south for sure we say yall and so forth!!! Where on her spine is your daughters spina bifida located? Or however that question is asked?

[beckas mom!]

My son, too, has a stronger left leg than his ight. He can move both, but prefers the left. He has been rolling belly to back and just recently back to belly. I do have a facebook, [share private information by private messaging].

Right now, we do not have to cath him. I hope that he proves to be more of a miracle and never has to, but if we do, we do. I'm grateful for all that he can do that the dr's said he wouldn't.

We cath becka every 8 hours and they told us that would help her out future terms!!! But I found out she had spina bifida when I was 35 weeks pregnant and two weeks later they scheduled me to have her. When I did they told me that she might do this age might do that it is a wait and are kind of thing so I guess I can't say they have said she won't do this or that but they would say ask all the questions u need too but I had no idea what to even ask?!? It was all new and to be honest I had never known what spina bifida was besides hearing little here and there about it!! But I still have tons more to learn lol what have they said they thought about your son when he was born?

[chandrick]

Hi there!
My daughter will be 4 months old on the 22 of august. This site has really helped me a lot! I have heard from other mom's everything calms down a little more around the 6th month mark. My daughter had L1-T12 she has saceral agenesis,mylo,hydro,shunt and bilatteral club feet as well as an underdeveloped left kidney. I hope you find this site as helpful as I do!:peace:

[babybsmom]

Wow...I found out at 34 weeks and was scheduled 4 weeks later for a c/s. Those were the worst 4 weeks of my life. We had some docs that said my son would never walk, would have to be cathed, etc. He has so far proven them wrong. It was a rough ride the first 12 weeks, but has slowed down some. thankfully. Where are you located?

[Laura32383]

Hey there! Welcome I am sure you will get tons of info on this site. I have a daughter who was born in Dec of 09. She was born with myelo and hydro. L3L4 She is cathed 4 times a day. I have a blog if you want to know more about her. mylittlebigmiracle.blogspot.com

[beckas mom!]

We are located in Mississippi around the hattiesburg area what about yourself? Sometimes I worry about how beckas life will go, what kind of struggles she will have but I have faith regardless to if she can or can't walk that she will be happy with her life and as a mother I guess that is all I can ask!!! Do u have other children? And yes I would say from finding out until we left the hospital and a few days after that was the most stressful time of my life and it all started at first they thought she had something wrong with her heart and then when that was ok'ed it was fluid on the brain and we were sent to a bigger city Jackson our capital and it took an MRI to find the spina bifida I lost my grandpa at Christmas and a few other family members after that so I guess its tru what they say when it rains it pours lol so I jeep my spirits high in the fact that it will get better becka smiling twenty four seven makes it hard to get down lol sorry for tellin like my whole life story lol I find myself venting easily I guess because I now know there are others right where I am lol

[LillyPie]

Hi Becka. My daughter Lilly has SB L4ish, she is now 5 years old and going to kindergarten this year. Just wanted to say HI and welcome. Becka sounds like a very sweet little baby, I hope you find comfort from this site. I know I have.

Jenn

[ainemc]

I just seen you asked me a question there lol, caitlin's level is around L4/L5, we think, we still waiting on MRI results. Becka sounds like a little cutie! I vent easily too lol, i find it helps!

[Jill]

Hi, welcome!

My son is 7 months old, has SB, hydro, and all of that. He's doing very well and is a little chubby angel. We live up in Ontario, Canada. :)

[sbmama]

Hi and welcome! :) My daughter is 20 months, cathed, no hydro, and walking now. I didn't find out about the spina bifida until late in my pregnancy and also had her at 37 weeks!

[RocketCityMama]

Just wanted to say welcome! I have a 3.5 month old dd, she has SB but no hydro. This is an awesome place, helped me so much when my little girl was born.

[beckas mom!]

Hi and welcome! :) My daughter is 20 months, cathed, no hydro, and walking now. I didn't find out about the spina bifida until late in my pregnancy and also had her at 37 weeks!

Hi!!!! What level is your daughter? Sorry I'm just getting to u I never know when someone writes me back are the notifications suppose to pop up when someone writes on my threads?

[beckas mom!]

Just wanted to say welcome! I have a 3.5 month old dd, she has SB but no hydro. This is an awesome place, helped me so much when my little girl was born.

Sorry I am just getting back to u!!! How is your daughter doing?

[Dodger67]

To get email notification of activity on all threads you are involved in go to http://www.spinabifidaconnection.com/profile.php?do=editoptions In the section headed "Messaging and Notification" you will find "Default Thread Subscription Mode" where you can select an option. I'd advise daily email notification.

Weekly is far too slow for us, we have on occasion had over 100 posts in 24 hours (of course you won't be subscribed to them all!) but if you read this site only once a week it may take you hours to read everything you are interested in.
The Instant option means you will get an email for every single post which is far too much, with the daily option you are notified only once a day that there has been activity on "your" threads.

You can of course change other options too but if you're not sure about something just leave it in its default state.

When I come to this site I always first select "New Posts" in the main menu near the top of the screen - that lists everything that has happened since I was last here.
I come to this site at least twice a day unless I'm somewhere off the net, which is quite rare.

[hope&faith]

Just wanted to say another welcome. We have twins, and Alex has SB. He is 17 months old but because of prematurity they adjust him to his "due date" so they look at him like he's 14 months old adjusted age. His level is L1. He has very little movement in his legs, we see him stretch them or move them very occasionally. It took him awhile to roll from back to belly and he seemed to work much harder sitting up independently too but I think thats common due to trunk muscles. He works soooo hard and we are so proud of him. He is army crawling everywhere and tries like heck to pull himself up on things but can not bear any weight on his legs. We have recently got him some braces to help this and we have a stander that will help him hopefully with overall strength. I would say the biggest piece of advice I got for this first year is try not to have too many expectations and let your daughter lead the way. Its much easier said then done but I found whenever I stressed over "oh will he ever figure out how to roll over, or maybe he won't be strong enough to sit alone, or maybe he won't ever crawl" oh these things at least for us "seemed" to take forever, when I finally voiced to his therapist, it seemed like he just figured it out over night. Its amazing. So try not to waste your time on the stress of any sort of time table. So many times they will do it in their own time but they WILL do it.
All the best!!
Holli

[Krit]

Hi Lindsay and hi Becca!

Welcome to this site - it's a great place!

My son Reuben is 13 weeks old with SB (L4/L5), and hydro. He is doing fantastically and is a star little guy. Wierdly enough his left leg and left arm are a lot stronger too...hmmm, something to do with the hydro maybe? We don't cath and he has movement all the way down to mid-shin.

I can't pretend I have all the answers but since Becca and Reuben are about the same age hopefully we can help each other out.

Again, welcome!

[beckas mom!]

To get email notification of activity on all threads you are involved in go to http://www.spinabifidaconnection.com/profile.php?do=editoptions In the section headed "Messaging and Notification" you will find "Default Thread Subscription Mode" where you can select an option. I'd advise daily email notification.

Weekly is far too slow for us, we have on occasion had over 100 posts in 24 hours (of course you won't be subscribed to them all!) but if you read this site only once a week it may take you hours to read everything you are interested in.
The Instant option means you will get an email for every single post which is far too much, with the daily option you are notified only once a day that there has been activity on "your" threads.

You can of course change other options too but if you're not sure about something just leave it in its default state.

When I come to this site I always first select "New Posts" in the main menu near the top of the screen - that lists everything that has happened since I was last here.
I come to this site at least twice a day unless I'm somewhere off the net, which is quite rare.

Thank u very much I wasn't sure if it was supposed to pop up or not!! U are very helpful!!! ;)

[beckas mom!]

Just wanted to say another welcome. We have twins, and Alex has SB. He is 17 months old but because of prematurity they adjust him to his "due date" so they look at him like he's 14 months old adjusted age. His level is L1. He has very little movement in his legs, we see him stretch them or move them very occasionally. It took him awhile to roll from back to belly and he seemed to work much harder sitting up independently too but I think thats common due to trunk muscles. He works soooo hard and we are so proud of him. He is army crawling everywhere and tries like heck to pull himself up on things but can not bear any weight on his legs. We have recently got him some braces to help this and we have a stander that will help him hopefully with overall strength. I would say the biggest piece of advice I got for this first year is try not to have too many expectations and let your daughter lead the way. Its much easier said then done but I found whenever I stressed over "oh will he ever figure out how to roll over, or maybe he won't be strong enough to sit alone, or maybe he won't ever crawl" oh these things at least for us "seemed" to take forever, when I finally voiced to his therapist, it seemed like he just figured it out over night. Its amazing. So try not to waste your time on the stress of any sort of time table. So many times they will do it in their own time but they WILL do it.
All the best!!
Holli

Hi!!! Thank u that actually helped me out slot just hearing those words!!! I try not to get caught up in it, its mainly when I am around babies her age and they are doing this or that but most days I'm glad for the things she is doing!!!! She is very strong and learning new things all the time!!!! Loves to look at books they make her laugh its so cute!!!!

[TysaDawn]

Hi Lindsay. My names Tysa, I'm 23 from Florida. I have a 3 month old son who has sb in the L3 region. He wasn't born with hydro but tarted to developed it after closure and was shunted at one week old. He is not cathed though and doesn't seem to have any bowl or bladder problems as of now. He has some movement in his hips and knees but has no feeling in his feet. He too is such an amazing baby & is so happy. It seems as if the only time he cries is for food or a diaper change. He is developing on time mentally and spends most his time smiling, giggling & baby talking. I found out at our first ultrasound at 17 weeks. We were told things would be so bad and he has proved the doctor so wrong. I couldn't imagine life without him. Hope you enjoy the site, it's great & has help me in so many ways! Lots of great people here!

[beckas mom!]

Tysa!! Hi nice to meet u!!!! Glad to hear your little guy is doing so well!!!! I have family that lives in FL I'm going for a visit next week so beckas great grandparents can meet her for the first time!!! :)

[claudiat_1808]

Hi Becka's mom! We have a 7weeks old son with Myelo at S5 and hydro. We got the news when I was 30 weeks pregnant. He as born on Aug 10 (36 weeks) by c-section. He was shunted 20 days after his birth as they had to wait for him to get stronger and heavier. We got to take him home 3 weeks after his birth. He is loour little sunshine. He has full leg movement down to his toes. His right foot is a bit stronger than his left one but we are doing therapy with him to make it stronger. We do not cath him as the docs said they would do kindey and bladder tests when he's 1 year old. Spina bifida is hard and I hate it but I am so thankful for our little bundle of joy and can't immagine my life without him.

[beckas mom!]

Hi Becka's mom! We have a 7weeks old son with Myelo at S5 and hydro. We got the news when I was 30 weeks pregnant. He as born on Aug 10 (36 weeks) by c-section. He was shunted 20 days after his birth as they had to wait for him to get stronger and heavier. We got to take him home 3 weeks after his birth. He is loour little sunshine. He has full leg movement down to his toes. His right foot is a bit stronger than his left one but we are doing therapy with him to make it stronger. We do not cath him as the docs said they would do kindey and bladder tests when he's 1 year old. Spina bifida is hard and I hate it but I am so thankful for our little bundle of joy and can't immagine my life without him.

Hi!!! Glad to hear your son is doing so well!!!! Just curious when u say therapy is that like first steps or by an actual physical therapist? We have first steps or early intervention and we are about to start physical therapy at the hospital!!!!

[claudiat_1808]

It's actual therapy. They started with him 1 day after his back closure while he was still in the NICU. Once he got transfered to the normal child care clinic the therapist came once a day to teach me too. Now that he's home I do therapy with him each time I change his diapers and go to see the therapist twice a week. We do Voijta therapy with him. I have a blog on the forum if you want to read up on it.

[beckas mom!]

That is wonderful our first appointment is tomorrow so I'm excited to see what they have to say and new things to learn!!!