Wow. I mean, seriously, WOW. What a crazy couple of months we have had, and especially this last week.
Some of you are wondering what's been going on.
LONG story short -
Sophia hasn't been eating, so she's been losing weight, etc. She finally got so bad that as her doctors put it, "it was a matter of life and death" for her to get a feeding tube put it.
SO... she had that done on Saturday. All went well, and the feedings are going great. She's already gained a couple of ounces.
For a couple of months I have been so frustrated with the lack of a diagnosis for her. I decided to go to the Temple and devote my prayers to Sophia and to hopefully having The Lords help is figuring out what's wrong with her myself.
A couple of days after our trip to the temple, and a lot of prayers later, and LOTS of research online, I found something called Oral SPD (google it). I presented my findings to her pediatrician, but he dismissed me.
Well, I still had a strong feeling that my findings were relevant to her problems, so I addressed her surgeon, gastro doc., etc.. and they agreed with me, and said she needs oral therapy to develop her senses and aversions.
I am so grateful to The Lord for helping me to find the information I did. They would not have though to test her for that, and without the information I found, we could have had a LONG ROAD with no answers.
We are going to get the weight on her with the tube, combined with therapy, and hopefully we will have her eating all her calories and off the tube within a year. They don't take the tube out right away if she starts eating, because she could stop at anytime again, and then we are faced with surgery again.
I am a little scared of caring for the tube myself, but I have a girlfriend who's son had a tube (called a Gtube if you want to look it up) and she knows a lot about them, so I am grateful I can call her if needed and she can come help me. (Thank you so much Lindsay!)
I got a crash course today on how to care for it. Lots to know! If it comes out, I put it back in (actually not as hard as I thought it would be) and if skin looks like it is growing around it, I cauterize it myself. Crazy, huh?
I know I can do this. The Lord has brought me from, "Oh my goodness, how could anyone EVER deal with something SO horrible!?!", to "Okay, time to feed, lets get it done".
The Lord has carried me, and I hope he continues to do so, because I am tired, a bit scared, and a tad bit depressed ( I do not do well with change - at all).
So that is the scoop.
I am grateful to have her finally getting the nutrition she needs!
Monday, January 4, 2010
Saturday, January 2, 2010
Surgery went well. However, she is not feeling very well. She is going to be getting a dose of pain medication here shortly, so I hope that with ease her discomfort.
The doctor said that the tube will most likely be in place at least one year. I am hoping this time next year we will be starting the year 2011 with a CHUBBY and HEALTHY Sophia MINUS a feeding tube.
I am so grateful for all of the prayers that have been said for my little family. This morning as she was in the O.R., I felt so much peace and I know it was from all of the prayers that have been sent my way.
Thank you so much to all of you who love us and care so much!
at 11:40 AM