update

I dislike colds!! BLEEHHH!!!



My baby looks like she is having a baby!




So we talked to the GI doctor yesterday evening. After talking to a few other doctors including Kylie's cardiologist, they believe that the most likely source of the fluid in Kylie's belly is chylous sp drainage ( fat draining from the lymph nodes ). This is a complication we had with Kylie's first surgery, but it happened A LOT sooner post op and was in her chest not her belly. So if that is what is going on we have to figure out why this is happening so long after surgery and how it is getting all the way down to her belly. Don't get me wrong, it is a good thing that it is going to her belly. This could be a lot worse if this were sitting in her chest like the first time, she would be having a hard time breathing. I just don't know how it is ending up in her belly. Anyway the plan at this point is to drain the fluid off her belly and send that for testing to see if it is the chylous drainage or if is something else. If that doesn't give us any answers we may still have to do the liver biopsy, but we are hoping to avoid that. So U of M will call us on Monday and set up an appointment time to do this. My daughter doesn't know the meaning of the word ORDINARY! And to top it off she is fighting a small cold as well. Can anyone saw insult to injury.

No News is Usually Good News

I know that it has been a while since I have written and I am sorry for that. Procrastination is a big problem of mine ( I will solve it tommrow :-)), I always mean to write in this but I never think about it until I am in a place where I can't do it. Rest assured though nothing big was really happening, well from a medical standpoint. She is talking more and she is asking for things, in fact one morning she woke up and asked for her medicine. She is starting to voclaize what she wants more and more, which is awesome. It is so cool to be able to hear her little voice, though she is two, so sometimes that little voice turns into a big whine...that isn't so cute. She has started the temper tantrums, not real bad (no throwing herself on the floor), more just screaming and waving her arms around like a bird trying to fly. I am thinking about trying that at work and seeing if that gets me anywhere...maybe ask for a raise, and while they think about it start screaming, crying and flapping my arms. Hmmm, that may work.
The reason why I am writing, though, is to let you know of something that has been going on for a little while. See, my daughter is getting bigger in alot of different ways. She is getting bigger in height, in weight, in vocabulary, in development, and in STOMACH. My daughter has a gut on her, that rivales mine, o.k. slight exaggeration there...her's may be a bit bigger. All kidding aside her stomach is getting bigger and has been for the last month or so. At first, we thought it was a good thing, she is gaining wieght WOOOHOO!!. Then we thought mybe it wasn't so good, she is gaining too much weight. Finally, we weren't sure what was going on, we just knew that my daughter was turning into a oompa lompa, and we couldn't explain it. Today we had an appointment with her Gastrointestinal Doctor, fancy medical term, for Stomach doc, and he took a look at the belly and sent her off for a STAT ultrasound and blood work up. For those you who don't watch GREY'S ANATOMY or ER, STAT means NOW! The blood work up showed that some of her liver enzymes were off, but not enough to be a blaring red alert. Her ultrasound showed that a lot of fluid has gathered around my daughter's liver and that the fluid was causing her daughter's abdomen to swell. So my daughter has gone from an oomp-loompa, to a water ballon, GREAT, I no longer have a child I have a picnic toy. ( sorry that one may have been a bit over the line). So the next stop was to get Dr. Suarez involved, he is our cardiologist, Kylie's heart doctor. He wants an ECHO of the heart, once again for you none medical drama watchers, an ECHO is a video of the heart as it is working. The thought is that something is putting stress on the liver so that it is malfunctioning, and oozing fluid, and Kylie's heart is the main suspect. The only problem is that the heart is looking great, well, for Kylie anyway. It seems to be working fine. So we have a liver having issues, labs that indicate that something is wrong, but not with a strong enough indication of what, and the main suspect has just been cleared. So now we have no clear idea of what is going on. We just know something is wrong. My daughter never does ANYTHING easy. I am considering putting her in time out until she starts copperating.
So our next step is to either pull some fluid out of Kylie and test it or do a liver biopsy and send that off to be tested. We are still deciding on which one to do. Testing the fluid would be a bit less invasive, but it also has a higher chance of being inconclusive and we could just be wasting our time while waiting for the inconclusive test results to come back, while my daughter stlll collects fluid. The liver biopsy is more invasive and has higher risk of bleeding but it is more likely to produce results. So we are going to call the doctor in the morning and see what we can do. From what I understand, this could go either way, either this could be something very simple, like irritation left over from surgery, or it could be REALLY bad....so I am asking for you to pray for us, as I know you are. God has brought Kylie through so much and alot of thanks is owed to you for the prayers that have been given up on her behalf, even when I forget to write. Well good night all I am off to bed, I couldn't sleep until I got this off my chest, sleep well.