Lila and I spent the night in the hospital last week to do a ph probe to see if she was having reflux. This was done so we could see what type of G tube she could have. Poor girl her little nostrils are being pulled in different directions. She didn't have any substantial reflux so a G tube was scheduled. 
We had a G tube and muscle biopsy on Wednesday. There is something so wrong about seeing a tube stick out of your baby's belly. She has to have the tube stick out for eight weeks until we get a little button. That should make life better.
She also had a muscle biopsy. (Thanks to all the special needs moms who voiced their opinion that she should get it done some where else. We took your advice very seriously and we were very willing to fly to Baylor. Our neurologist -who has no ego- asked around and sent emails all over the country to see if this was necessary. The specialists all agreed that wouldn't be a problem to do it at Primary Childrens) It is so awful! Her muscle biopsy looks bloody and painful and of course there is a tube sticking out of my baby! It's been pretty hard to watch her go through this .
Quinn and I have decided that Lila must have passed some serious tests in the life before this because she is by far the most valiant little thing I have ever met. Once again she hasn't complained. You can tell she is in pain, she whimpers and squirms, yet she is patient and gives small smiles. I am in awe of her. She is teaching me so much about endurance, patience and having a good attitude.
4 comments:
Wow, a difficult week for sure.....she truly is valiant and I have never met her but it is completely visible. We are struggling with whether to do a MB here or not too. We were going to do it tues but decided to hold off. If you don't mind me asking, how long do they speculate the wait is for results. Did they tell you if they can test the complexes individually? I've posted here a couple of times before and am drawn in by her inner and outer beauty!! My prayers are with you all.
Ang
I just tried to leave a comment on your blog and I am having technical difficulties. Please email me at kristiet13@yahoo.com I would love to chat. They say the muscle biopsy will take 8 weeks! Awful huh? some info by next week though.
What a little trouper. She's so brave and so are her parents!
Sweet thing. I am glad that part is over. I remember thinking similar thoughts - nobody should have to be fed through a tube in their stomach. However, it is a HUGE blessing and something she literally could not have lived without. Now I am grateful for it on a daily basis. She doesn't have to taste all of her nasty medicine which is a
blessing. I am keeping my fingers crossed for helpful news in 8 weeks.
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