Hey Lana (crayonblue), how's Carmen?

[JoyNChrist]

I saw your reply to Bill's thread, and I've been thinking about y'all a lot lately. I try to send a prayer your way whenever I think about it. If you get a chance to update, please let us know how Carmen and the family is doing.

[tylersmama]

Yes, please. You and your family are frequently in my thoughts. Sending lots of positive thoughts your way...

[crayonblue]

Thanks for asking! Carmen is doing well, for Carmen! Mid-December she was in the hospital for 4 days after having an NG (nasal) feeding tube inserted. She should be going back into the hospital sometime in January to have a G-tube (tummy) feeding tube put in. She is on 21 hour per day continuous feeds as she could not tolerate fast feeds. We are getting used to life with machines, that's for sure!

We now have 10 hour per night nursing care so that is a HUGE help. Carmen is up most of the night coughing and needs to be suctioned out regularly and re-positioned regularly so having a nurse is literally saving our sanity.

We also have Hospice help couple of times per week. Carmen does not technically qualify for traditional medical hospice (we are taking measures to keep her alive at this point) but we found an amazing group called Hospice, Caring that helps us out with running errands and watching Lauren during Carmen's many doctors' appointments.

Carmen is still very content and I am very thankful for that. She has lost all motor skills and no longer turns over or reaches out. She smiles very rarely and I don't think can see much. She responds a tiny bit but is rapidly losing that ability too. We try to enjoy each moment with her. I can honestly say I have a completely different view of life now. Compared to healthy children, Carmen has nothing really to offer but she is making a huge impact on my life and I hope others too.

Lauren is doing great with Carmen. She was a little worried about the feeding tube but now it is just a normal part of Carmen's life. She adores Carmen...I think she views Carmen as a big doll! I try to take time each week for just Lauren. We are trying to prepare her, in small ways, for Carmen's death. But, it's a hard concept to explain to a 4 year old. We have gotten some counselling thru Hospice on how to explain all of this to Lauren. She knows Carmen is going to Heaven but of course, she wants to know when Carmen will be coming back and if she can go too. Carmen most likely has a couple of years to live. Three is probably an average age for these kids.

We cherish your prayers. If you are interested in regular updates on Carmen, please email me thru the boards.

[JustMe]

Hi Lana,

Thanks for posting. I wondered if maybe you just hadn't felt like it. I think of your family often. I am sending you an e-mail thru the boards.

[Aunt to sweet baby boy]

Thanks for the update. I am also going to email you through the boards.

[new_mommy25]

Lana, I am always thinking of Carmen, and you, and your entire family. My prayers are with you. :hug:

[anamika]

Thanks for updating. I was wondering how you were doing?
Sending good thoughts,

[JoyNChrist]

It's good to hear from you. I think of y'all often, and I'm glad you didn't mind me asking.

[sidmand]

Thank you for your update. I'm sure you have a lot on your hands at the moment and it means a lot that you'd take the time to let us know how you are doing.

There are lots of people you don't even really know thinking about you and your family. I'm glad Carmen is doing as well as she can.

Take care of yourself and your family and feel free to reach out here whenever you need to.