I just got some great news that we should be getting her some new special prescribed formula tomorrow. It is called Neocate. We have been trying to get it for a long time, but it is taking our insurance forever to get it approved! Finally, the nice lady that was helping me said she felt so bad she was going to overnight us one can even though it still hasn't been approved!!! There are nice people in the world! She has had a surgery (nissen fundoplication) that makes it so she is unable to vomit. But, she has been vomitting or trying to vommit constantly. At least 10-15 times a day. We have tried everything. We have switched formulas, changed her feeding amount and rate, tried medicine after medicine and nothing has worked. We are crossing our fingers that this new formula will work!!! We don't want her vomitting because then she could aspirate! I think she has cyclic vomitting. It is really common in CHARGE kiddos, but her doctor didn't really want to go there yet. She also got a new nurse last week. We really like her. She has been recieving at home nursing for a few months now. Someone comes over 3 times a week for a couple of hours so I can run errands and allow Drake to continue to have a normal life. This week our nurse started coming over for 2 night shifts also. When we brought L home from the hospital our nights were horrible. I counted how many times I would have to get up with her to suction her. It was anywhere from 30-35 times. It has gotten MUCH better!!! It is anywhere from 5-12 times now. BUT.... for some reason I seem more exhausted now than I was before. I just think 8 months of 24 hour care has gotten to me. So we started 2 night shifts a week. I don't think I slept any better this week because I was worried about what was going on, but I think I am really going to like it!!!................................................................................................
Like I said before, I CAN"T keep clothes on Drake!
This is my proud mother moment of today...
Yes, I realize my neighbors think I am an aweful mother!
Why in the world is it SNOWING at the end of April???
It is supposed to be SPRING!!!
P.S. Drake went potty in the toilet today!!!!
HAPPY FRIDAY! So glad it is the weekend!
3 comments:
I hope the new formula works! And yay for help at night! It took a long time for me to feel rested after all those long nights, hopefully you'll get caught up soon!
Calyn I wrote this on my blog too but I didn't know if you would see it! But I do know Holly! I asked her at work the other day where she got a job and she said, "I'm working with the cutest 8 month old and it's the best family!" I knew instantly it was you! I am so glad Holly gets to work with you! I hope you can catch up on some much needed sleep!!!
BEST photo EVER! (Drake in the yard!)
How's the Neocate working?
Hope you all are well!
xo~
Andi Bean
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