Hello to you all,

I just decided to send that last letter and realized, I had already sent it, although I left a sentence unfinished.  Natalia still spits up and that keeps me anxiously watching her as this is how some of these Trisomy 13 babys die, by aspirating.  I am able to keep a pretty good eye on her during the day but the nights are becoming physically painful.   She has now been home a week. She looks terrific, her color is good, that baby acne is clearing up but she is still a bit agitated in her sleep.  She doesn't have a restfultwo plus hours as she still has reflux after her feedings.

As the week progressed I was getting less and less sleep.  Thursday
night she  was so agitated I was up every half hour trying to make her more comfortable.  Of course, by Friday I was a wreck.  It is really scary when I am driving sometimes and the lack of sleep just
makes my eyes roll back.  I have been telling Stephen that I need more help, it is just physically impossible to do everything for her, be what I need to be for the other kids, take care of my husband, and find some time for me.  Next week a representative from the Regional Center is coming and I believe I will qualify for some nursing rest hours because of Natalia's condition. It is minimal, maybe 24hrs a month, but it will be something and anything at thispoint will be great.  Also, we are going to check into some possible nighttime relief as she is more agitated at night with the continual feeding system. Yet feeding her slowly with the feeding tube doesn't allow me to rest either.

Friday, when I was feeling so physically exhausted, I was wishing I had set something up with a friend (So many of you have offered.),
then I had two calls, one friend ask if she could do an errand for me, (Yes, I needed to purchase a birthday present for Jacob's friends party.) and a neighbor asked if I could use her help.(I was able to get a nap.)  Wow! I know God is taking care of us..... I really needed some support as physically I was just so tired I was sick. Another friend offered to help Jacqueline complete a Spanish project, a pineta. (That was such a time consuming project that we kept putting it off.) These past few weeks some of you have helped with meals.  I have never been in a situation before where I have needed the extra help with meals. (I could get use to this!!  HA-HA) More seriously, the time cooking saved allows us to be with the older kids. I am hoping to start playing games again as we get on a better schedule. We are blessed with many wonderful people in our lives. You all give in different ways, thank you for your prayers, love and support.

God Bless you, Have a great weekend. Love, ThereseAnn