10 weeks 2 days and 14hrs later....

Well it has been a few days since I have last updated you on our Rhodes Family Adventures..... Sophie has had some rather uneventful and much needed days. She has battled some higher temps on and off but never quite seemed to catch anything (which is GREAT). I read somewhere that children with CHARGE have a difficult time regulating their body temps; perhaps, that is the reason for her up and down body temp. Since we last spoke, Sophie was coming off of the home vent and back to the hospital. Well, we tried the home vent again Tuesday afternoon and she lasted on that vent until this afternoon. It all finally caught up with her and her breathing was in the 70-80s range with a higher heart rate. They have since placed her back on the hospital vent and she is doing just fine now. The doctors have compared the hospital vent to a Cadillac and the home vent to a Honda. They say it often takes time for baby especially with her same size to adjust to the less sensitive settings. So we will are waiting on Sophie to grow and for her to tell us she is ready again. At this point, the main thing(s) keeping us at the hospital are waiting for Sophie to grow and become stable on the home vent and for John and I and a few care givers to get all of their trainings and classes done on her care. The care class and trainings are very time consuming, but a very very important parts of Sophie's life. John and I met with a couple of agencies for home nursing this week. John and I will primarily be Sophie's parents, doctors, and nurses at home but it is also nice to know we can get help. It all depends on our insurance for the allotment of hours we can get a week with home health care. We will definitely need a home nurse to help from time to time. Also, a home nurse will be a deciding factor on when and if I can return to work. There are many very difficult decisions ahead of John and I. Having a home nurse will be a wonderful and much needed assistant but one has to think it will not be 24/7 like Sophie will require. There is also that motherly feeling of not wanting to leave your child either... Most moms can agree. Now imagine having to decide if you can leave your sick child... Ugh! It will come down to insurance, finances, and a matter of the heart before we can make these decisions. Also, we have been considering a move. Our home is so old. In fact it was built in 1889 to be exact. With all of Sophia equipment we are having someone come out to inspect the house and electric to be sure it is suitable for her needs. So we will be keeping our eyes out just in case something comes along that will better suit our family and our special needs. But for now we are content and content is a good place to be. Sophia is actually doing better and better daily. It is so great to watch her grow and develop her own personality. She makes the funniest and cutest facial expressions; especially when she has a dirty diaper lol:) She absolutely loves her paci and will tell you when she wants it! I just love this child more and more everyday. I cannot believe it has been 10 weeks already! Time is flying and yet standing completely still in some respect. Just the other day, I wrote the date for the first time in a while and was taken back by the fact it was MARCH. My house is still stuck on December 27, 2011. Our Christmas tree is still up in the living room. At this point, I think it is only appropriate that we wait until Sophia comes home to take it down. On the other hand, time is flying right by. I feel like its an episode of Ground Hogs Day. Each day running into the next. At the hospital time gets lost and before I know it, hours have past and then days and then weeks. Before each day or week was a new development or a new worry. These past couple weeks have been settling down. We still get a surprise here and there but I am completely ok with taking it easy for awhile. (Easy in the sense we still have a baby in the hospital) For now, we our making progress tiny tiny steps at a time.... I have always been a person with a plan but going through this experience I am learning to let go on my plans and be blissfully unaware of what lies ahead.