Small update: Q is doing well, but she is loosing weight again, slowly. Unfortunately 35ml/hr, even if put at 24 hours a day is not enough calories to support her. So, although she is doing GREAT without so much stuff in her body, she is not getting adequate nutrition. This has left me with a small, decision to make. A) increase her calories by increasing the rate at which I feed her or B) allow this to continue until she gets her jtube surgery. My decision: See what the surgeon says as far a sustaining her until we get this surgery. YEP! we got a date for our surgeon consultation. It's on Thursday of next week (the 9th). We will be discussing options. either for fixing her anatomy, or going through with the j-tube procedure or even both. We will be discussing the pros and cons of both as well as asking lots and lots of questions about her long-term care when it comes to both of these options.
as far as this gagging retching thing. She hasn't been as bad as she was that one day... i'm not sure what caused it, but she is spiking fevers off and on recently, but only up to like 101 or something, nothing major but nothing is sick it seems. I don't think its any kind of infection, though I also don't know what else it could be. We took her to the pediatrician so he could fill out paperwork. any kind of question i have for him regarding her care is basically reverted back to "well, what do her specialists say about it?"... honestly, i can't expect much more out of the pediatrician anyway so we just deal until we have to seriously worry. That is our life. Quinn will let me know when something is seriously not right. we learn to deal with the daily complaints of stomach pains, leg pains, "butt" pains. it is what it is until we know what it is. <--- does that make sense?
She is still not in preschool. We are STILL waiting to hear back from the state nurses so we can have this pre-enrollment meeting so we can get all her paperwork in order so she can join her friends. The yahve been in school for about two weeks now, but she is still unable to attend. *sigh* I hope those lazy nurses can hurry up so my child can learn stuff! and I really hope it's not this way for kindergarten. it's bad enough taht she will need lots of time out for her surgery and we just don't know what the rest of the school year will be like. I'd rather have her in there while she is healthy and capable!
And pictures!!! Enjoy!
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