Update

[foreverangel]

 

  So Schuyler is now 2 years old. We are still being seen by all the doctors who we were seing when we first came home from the NICU last January(08). She is finally starting to gain weight now that she is on a GJ-tube feeding and not just the G. Still getting all the meds, and has actually started a couple more since she began having seizures last October. We started on Keppra and it just doesn't really help, so now she is being put on Trileptal. Which, so far hasn't decreased the activity much. She still has anywhere from 6 to 12 a day. She is now almost 23lbs, all the way from 1 lb 10oz. It's crazy how much she has grown since she was born. Schuyler is still on Oxygen 24/7, but hopefully one day she will be able to come off it. Still can't sit on her own, or crawl. We are still working on just holding her head up on her own, but we see improvement everyday, just a long road to go. I just long for the first time(if it happens) that she says mama. She is our little princess and miracle and I don't know what I would do without her. Her big brother is so in love with her still, we can't keep him away. Jackson is now 4 and just started Pre-K last Monday. He has his ups and downs with going to school, but once he is there he has so much fun. I miss him so much when he is gone though. We have all this equipment in our house now, so I feel as though my house has shrunk by 25%. Everything is well worth it though, if we can get Schuyler to the point of walking, crawling, sitting, anything I would feel like it has all been a blessing.

  I have been having little meltdowns lately when She has her seizures, especially the long and really rough ones. All I can do is think back to her twin Sean laying in the NICU trying to fight so hard, and just not being able to win the battle. He fought for 16 hours and Schuyler has been fighting for 2 years for a stable life. My problem is whenever things get bad for her I fear that we will lose her too, and I just don't know if I could ever even begin to think I would make it throuh that. I was so attached to Sean after a day, and with her for two years I would lose it all. I don't even know if I have really even grieved for Sean since we lost him, I have been so consumed with all of Schuyler's needs I haven't really taken the time to sit down and really realize that he was here and then gone. I feel like Jackson suffers because I am constantly in and out with Schuyler and he kinda gets pushed to the side. I just haven't found the perfect balance yet between a child with no issues and one who can't really be left alone for more than 10 minutes. I need help figuring out how to make him understand that I do love him and care for him as much as his baby sister. I just don't want him to grow up resenting her or me for it.

[Lb128f]

Aug. 20, 2009 at 2:50 AM

I'm sorry you are having a rough time....balancing time between children is hard...and with a special needs child even more so...just try and give him all the attention you can when you are alone (if she is sleeping)...and, try and find someone who can help sometimes...maybe to give you some time to take him to the Park or Playground...just the two of you. I'm sure with you reassuring him of your love that he knows you do love him as much as your DD. But, he's little and does still need a lot of your attention too. I'm glad your DD is doing better every day...and that your son has started Pre-K...I hope he really enjoys it when he is there. Good Luck.