Thursday, April 4, 2013

All kinds of news.....

First we heard back from Genetics, and the two different syndromes that they tested Preston for have come back negative! I am so thankful, I really didn't believe he had either one, but when the specialists are questioning it, it made me a little nervous. There really isn't anything else they can do as of right now. They said if he acquires any more diagnosis then to call them and let them know as it may trigger them to think of something else to test for. Otherwise we will return in a year, at which time they are hoping they will have more information to do the right type of testing. We also were told a bit back that Preston needed a fecal transplant, or that he would need to have his colon removed and have a permanent colostomy. So needless to say I have been struggling quite a bit with being anxious, even though I KNOW THAT IT WILL BE OK! I do know that it will be ok, I know that God's plans are sovereign and that no matter what the doctors say, that God is completely 100% in charge. But right now, I don't fully know what the answer to this situation is. I don't know what God's answer to my prayer is, I do know that He is encouraging me so much, so many people have reached out to us and have been praying for this sweet little guy of mine. We heard this past week that officially the health insurance has denied the transplant, and therefore the doctor has been talking about the colostomy again, so scary :-( Right now there is an investigational medication that they are using in adults to treat adults with this, so they are thinking about the possibility of trying it on Preston. I also have been doing my own research and have found a couple of doctors who are doing oral immunoglobulin therapy to treat it. So our wonderful pediatrician and our immunologist are researching those options. Please be praying for wisdom and patience for all people involved. And certainly that God's glory will be revealed in whatever the outcome will be :-) a I am now 17 weeks pregnant. Feeling ok, but HUGE! I am not really, and haven't gained back any of the weight I have lost from puking yet. I am officially wearing maternity pants/bottoms, but can still wear my regular shirts. I feel ok, extremely tired most of the time and nauseous a lot. My blood pressures have been good so far. My lab work has been great. I have seen high risk B already as well as the regular OB. I certainly didn't feel good when the high risk OB from Brigham and Women's Hospital in Boston where they have over 1,000 births a year, said "I think I remember you, you were a very scary patient!" Yeah definitely didn't give me a good feeling :-( I know God is in control of this little miracle baby too, and I am praying fervently for a healthy full term baby with no complications :-)

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