Hi everyone! I saw this website and it seemed like everyone on here has alot of wonderful info. and a great advocate for their children. I have been on this journey for the last 8 months. My son is 10 1/2 months old and has a rare brain malformation that caused low muscle tone and hydrocephalus. He has alot of developmental delays and sees a PT, DS and is beginning with a OT and ST soon. We go on Thurs. to find out if he needs the fluid in his brain removed. I'm so scared. People tell you they do it all the time and not to worry. The surgery may be done alot but not to my baby. He is improving with therapy. He stared holding his head up about 6 weeks ago. The most frustrating part is mentally he is completely there, his muscles just won't cooperate. The brain malformation is called polymicrogyria if anyone knows about it. I look forward to meeting everyone.

Welcome. I am Jennifer, mom to six kids. I don't know anything about your son's problems, but I am willing to listen or help you find info anytime you need me!

__________________
Shaking in my boots (well, if I was wearing them in the middle of summer!), but glad to be back!

Welcome to Mommysavers and the Special Needs forum. I can only imagine how hard it is for all of you. I'll be praying that things go well with the surgery. It is reassuring that this is surgery that is done frequently. I agree - not to my baby. Both my dd and ds had to have surgeries early in life. Both were fairly minor, but I still dreaded each one, although they were necessary. It helped that we had excellent doctors, and I got to meet the anesthesiologist. Both times (I had to ask on the 2nd one, but thank God I knew enough to ask) they allowed me to don the coveralls and cap and carry my baby into the room. I got to hold the little hands and kiss and reassure them as the mask was put on. Each time, they were out in under 10 seconds after the mask was placed. I couldn't hear the cry because of the mask. Both times, they let me hold baby in my arms and ready to nurse when baby awakened, so I was the first thing they saw. We used the pain medication the first night, and baby still was tired from the anesthesia. I was prepared to use it longer, but only needed regular Tylenol. They bounce back much more quickly than we do. I was so glad it was over, but was glad I was there for each step, as much as possible.

Please keep us updated as things progress. We're here just to be an ear, a shoulder or if/when you want advice. We also love to help celebrate! We're glad you joined us. We have a wonderful group of ladies here. By the way, I'm Carol and dh and I have two little ones: a boy, 6, and a girl, 14 months.

__________________
Make someone's heart smile today.

Hi, and welcome to MS! I not familiar with the condition your ds has either, but I have spent a LOT of time in hospitals with the youngest of my twins. Lily (will be 3 in Jan) was born with several structural anomalies, and spent her first 6 months in a hospital before coming home with a tracheostomy, which she had for 18 months. During that time we had lots of homecare nurses and special equipment set up in our living room (so Lily could be as much a part of our family as possible...I really didn't want her holed up in a bedroom most of the day, so her bed was in our living room). She's also receving in-home PT & ST, as well as pool therapy, which would be really great for your ds too. It's great for increasing muscle tone and strength! (You could talk to your PT about it, and see what they say, and when they feel it would be appropriate.) I can already see a difference in Lily. She's starting to stand up without holding onto things.

Please know, we're always here to talk to or bounce ideas off! Looking forward to getting to know you better!

__________________

Welcome, my name is Mary and I am mom of 4 beautiful daughters. I am also not familiar with your DS condition. But please feel free to educate all of us. This is a wonderful forum of great moms who are willing to listen and willing to share ideas if they are asked. Best of luck to your DS and I second talking to PT or anyone else who may be able to answer questions and alleviate fears. Everyone who is working with you is a wealth of information and can only give you that info if you ask. My experience is the more questions you ask the more suggestions they can give you. Please keep us updated and you will be in my prayers.

I just wanted to say Hi and welcome! I don't have any info for you, but wanted to tell you I love your name!!! My precious nephews name is Grayson!! I just love that name!

__________________
Moms of little boys work from son up 'til son down!

Thanks to everyone who replied. I forgot to add my name is Erin. I'm sure we can all agree that having a great support system helps so much. It really helps to talk with people who "get" it. The polymicrogyria is a structural malformation of the brain. It used to be under the umbrella term of CP but now they consider it to be separate. They say it happened in utero. The hydrocephalus and low muscle tone are secondary.
Thanks for the support and I am here for you all too!!!

Welcome Erin! We're glad you're here with us!

Welcome Erin,

This is a great forum and Carol has worked hard to get us here. It is great place to share, cry, support and just chat with others that truly understand.

Welcome, April

Hi Erin and welcome.
My name is Lynda and I am newer here too. I have found this website to be of great support and information. I have two boys, my youngest has autism. On of the kids in his class had to have the surgery you are talking about. I know it isn't very comforting but he did fine and is doing great! But we all know it's diffrent when it is your child. You'll be in my thoughts and Prayers.