We had a Mom with a 16 week baby post on our yahoo group that she just got the diagnosis of cri-du-chat syndrome. She was wondering what to expect, wow, what a hard question to answer. The first word that comes to mind is "amazed". I am always amazed at what Nellie is able to accomplish. I mean I honestly never thought she'd ever be able to ride a bike without those training wheels. You have to be realistic but you don't want to limit your child either. I was thinking of this Mom and it brought back so many memories, it seems like only yesterday that my house was constantly filled with therapists, we were always at one doctor or another and we had no idea what the future held for Nellie. I remember one doctor saying she would never walk and my biggest hope was that she would learn to smile. Wow, look at her now. I told the Mom to take everything in little steps and not look too far ahead. It's funny the things I used thing were a big deal, I think nothing of anymore. I know Nellie will keep amazing all of us!

Well my little brother Zarek (that still seems very weird) had his surgery a week ago today. He went through the surgery well and is at home now. i have to say though, it doesn't seem like they have anymore answers than when they started. They drained the mass and found a mass on the chest wall, they don't know what they are dealing with. The doctor wants to wait a couple months and do a MRI, Zarek will then be 5 months and a little bigger.

getting ready for shriner's :(

Woo-hoo the kids are off for the week! I enjoy having them home, but it is a lot of work. I just think it's hard to keep the kids busy this time of year. Colin has all sorts of things to do, skateboarding, snowboarding etc... but the girls are a different story. I don't like to complain but I am ready for winter to be over! We are going to go snow tubing tomorrow with the Antons, I love snow tubing!!! And of course the kids do too.

We have to go to shriner's hospital on Thursady and I'm nervous. Everytime we go I think they are going to tell us it's time for surgery. I know she has to have it but I don't think I'll ever be ready. I joined a juvenile scoliosis group on yahoo and it made me realize how bad Nellie's back really is. Nellie now has a 56 degree curve. She hasn't had any surguries since she was little. I'm sure it will be worse now because she knows enough to be scared. It is going to be so hard, she has always been in Albany Med (only 15 min away) this time she'll be so much farther and she'll need to stay 2 weeks!!! 2 weeks is unheard of! She was home within a week after her heart surgery. Wellm needless to say I hope we can just keep putting this off and maybe meanwhile they will find a cure. We'll see what they sat on Thursday.

Colin had a great weekend. He had 2nd's & 3rd's in all his motos and had 7th places in his mains. I'm just happy he made his mains. He is really going to have to work hard this year, he's getting older and the expert class is no joke. It's hard to keep him training all winter, he's still a kid and he wants to hang with friends and have fun. Good Job Colin!!!!!

They are growing up

It is so nice and sunny here in NY. The girls and I decided to go for a walk. We didn't make it very far, it was too cold. The girls wanted to go home and have hot chocolate. I'm so glad Colin has been doing well in his qualifying today. At this stage (being a 2nd year expert) I'm just so happy if he can make it into his main. I honestly didn't think he'd have a good weekend. He hasn't been working on his sprints and he's so into his skateboard and snowboard this time of year. He's really doing a great job.

I can't believe I had to go to Braelyn's kindergarten registration this week. My god, it seems like only yesterday she was a baby. I wish she didn't have to go. She said the funniest thing today. Nellie wasn't listening and I told her she'd have to go sit down. Braelyn says "Mom don't talk to my little sister like that". Of course Nellie is 4 years older, but it is true Braelyn has really become the older sister in many ways.

I also had Colin's question & answer night for middle school. I'm not ready for this. He has been such a great kid and he has such a great group of friends, I worry about the type of kids he's going to meet. I hope I've done a good job with him, I want everything to be OK for him. I just remember too much from middle school, he just seems so much younger.

It's been a little crazy because Jay is now the state commissioner for the NY empire bmx state series. It is so much work and he really wants to do a great job. I know he will, but I also know you can't always please everyone. It's gonna be crazy!!!

Jay & Colin are out of town it's almost 1:00am and I have trouble sleeping...so I'll blog. I've had my Dad on my mind all day today. Honestly, I usually try hard not to do too much thinking when it comes to my Dad. However this is different, my little brother, Zarek who is about 12 weeks old has been very sick. He had pneumonia & was having trouble breathing. He was admitted to the hospital last week, at that time they found a large mass on his lung. His lung has since collapsed and the mass will need to be removed. My heart hurts for my Dad & Grace, I can't even imagine. It is the not knowing that makes it so much harder to deal with and he's so little!

Jay & I have been through a lot with Nellie over the last 9 years. As a parent you just have to deal with what is put in front of you, you don't even think about it. As long as I live I will always VERY clearly remember the doctors taking Nellie away on the stretcher and later the nurse telling us "they are working on her heart and she is on life support". Every hospitalization was hard, but those words took my breath away. When I hear about some one's child going through something like this, I know how scary it is. It makes it tougher when you don't know what your dealing with, your mind can go in all kinds of places. I just pray everything will be OK for Zarek.

catching up

I don't know what I was thinking, there is no way I can keep my blog updated on a daily basis. Well, it is what it is. We were crazy busy during Dec. & Jan. I was so worried about Nellie's school for next year that I was loosing sleep over it. It is time for her to go into a life skills class and it just makes me a little sad. The class seemed like it would be taking a few steps back for her. I was driving myself crazy over it. Jay said "what do think Nellie is going to do when she grows up?" I think she will be able to get a little job. Jay said "does she really need to know the stages of a water cycle? let her have fun at school" So that is what we are going to do. She has amazed us since she was born and I know she will keep it up.

I am constantly amazed at this little girl and she blew us away again. She is reading! I asked for her to start a new reading program "Edmark" and it is a perfect match!!!! She is actually reading!! Does anyone remember when we were told she may never hold her own head up?

Braelyn is still giving me a run for my money, but I am going to miss the hell out of her when she goes to kindergarten. I wish I could keep her little forever, mostly because I can just imagine what our house will be like when she is a teen. The drama is already crazy around here.

I have to brag for a minute about Colin. He received a award at school for being compassionate. His teacher said he is always kind to his sister and all the other Questar kids in school. I was so proud of him. He is a great kid,I keep reminding myself of this because his mouth has been getting a little fresh the last few weeks. I'm not used to that with him, Braelyn yes, but not Colin. He has been putting a lot time into skateboarding at the shelter and it's paying off. He is on his way to a national race in Ohio, I'm keeping my fingers crossed!