Hey! I'm a Newbie!!!

iVillage Member
Registered: 11-07-2003
Hey! I'm a Newbie!!!
4
Mon, 01-19-2004 - 1:06am
Hi. My name is Luann and I am looking for parents out there who may be going through the challenges I am or anything similar. My daughter is 3 she was diagnosed w/ a brain turmor in Sept. a week after her birthday. She underwent surgery to remove/biopsy the tumor and it did not go so well. She had a lot of swelling and bleeding and the doctor actuallly had to cut some of her cerebellum off to close the wound. He did not seem at all positive that she would wake up or even be responsive if she did or if she would even live through the night. But through prayers God heard and he held her in his arms that night and carried her through. Since then she has had several surgeries one including a shunt placement and a feeding tube. She has battled the odds and the doc's and nurses just scratched their heads baffled at how well she was coming along...about two months and two weeks along she was transferred to another hospital specialized in brain injury and rehabilitation...before long they had my little girl responding again and starting to eat and trying to sit up and doing things that they never thought she would do for months...now she is home and she has physcial therapy and occupational therapy 3x a wk.. and speech 2x a wk. she still cannot stand on her own or walk on her own...but she is trying very hard....she can crawl pretty good though and can sit up on her own...she can get up on the couch and off just fine...I have to help her walk (support her while walking)and get things for her and be her playmate....she needs me for so many things...dad works and I stay home w/her during day..when daddy comes home she still wants me so I don't actually get a lot of time for me...but it's ok because she is so worth it all...but I do get tired I really do and stressed too...and I just wish I had someone to help me sometimes....but my family lives far away from me and my husband comes from a small family and they help when they can but for the most part we are alone during the day. her physical therapist is trying to track down a pediatric walker that's her size so once she gets going on that I have a feeling she will be advancing much faster.....and my back maybe will get a little break..lol

But anyway, i just wanted to say hi and I'm here so if anyone wants to give any advice on how they keep going...let me know..thanks!

iVillage Member
Registered: 10-21-2003
Mon, 01-19-2004 - 10:25am
Hi Luann,

I'm SHelley. I'm a SAHM to Alicia (almost 6 with athetoid CP and seizures-controlled by meds ) and Jordan (he'll 1 next week-- my "garden variety" child). I don't have a lot of advice but I'd like to say congratulations on your DD's recovery. Kids are so resiliant- too bad we weren't.LOL I hope her recovery keeps on going as well as it has been . Venting and questions on the boards are a good way to help get through another day. There is always someone who has been through or heard of the problems that we run into and they always give what help they can. Welcome. SHelley
iVillage Member
Registered: 03-19-2003
Mon, 01-19-2004 - 5:40pm

Hi Luann and welcome.

 


 



iVillage Member
Registered: 11-21-2003
Tue, 01-20-2004 - 12:16pm
Hi Luann,

I am new here too but wanted to say congrats on your DD recovery. I agree that you DO need some alone time JUST FOR YOU! We have agencies here that provide respite care and it is wonderful. We even have home trainers that come out and work with the children. Ours is wonderful she is taking Philip (Paytah) out this Sat to a movie as a reward for improving behavior at school. These programs are great they work with and for the kids but also give US a break. Stay on the board and talk and vent.

Jeritta (Paytah's mom)

iVillage Member
Registered: 03-19-2003
Wed, 02-04-2004 - 9:10am

Luann, how are things going?