Well things have been going really good for us during our time at home. Bailey has been attending school and physical therapy and mommie has been working! Needless to say things have been pretty busy as usual. We did have a few doctor appointments and such but nothing major.
Bailey does however have another UTI (urinary tract infection), which makes about 12 throughout this past year. The doctors are getting a little concerned because her body is becoming immune to the antibiotics and we are having a tough time getting rid of this one. We are now on antibiotic #4 …so please say a prayer this one works. More than likely she will have to eventually see a Urologist because if she keeps getting these her little kidneys will probably stop working which will cause a whole other set of problems for her…but I am a firm believer that our prayers will work!
On another note we got her HAMA results in and she is NEGATIVE!!! So we are leaving on May 14th for round 6 of 3f8. I am so grateful that she has made it through so many rounds of treatments despite the odds that said she would probably relapse before then. The power of prayer is really an amazing thing! She is also finishing up her 6th and FINAL round of Accutane…THANK GOD!!!! I hate the side effects that come along with that drug…I know it is doing good for her but my goodness she could use a break. This round of Accutane has been really rough on her. She has been getting really bad headaches to the point that it makes her throw up because she is so nauseated.
So please continue to pray as we prepare for another trip to NY. We will do her 3f8 treatment the week of May 16th and will repeat her 3 month scans the week of May 23rd. I am praying and believing for nothing but positive results for my little trooper. She deserves a fun summer free from hospitals and doctors! We are really enjoying the normalcy of life again. It is really amazing all the little things you miss when you are away for so long…you learn to appreciate so many different things you used to take for granted daily.
I must tell you that it sometimes scares me to think that in an instant our little world that is finally coming back together, could at any point be flipped upside down again with the blink of an eye. Although I choose to focus on the positive and hold fast to my faith, in the back of my mind those thoughts are there. Every time we get closer to scans I start to think about these things because let’s face it…it is part of our reality now. I long for the days when she was just a little girl growing up…I miss those days for her. She is faced with so much “grown up” stuff now that I feel it has made her grow up a little too quickly. She was always smart and grown up for her age, but this is different. I don’t want her to have to face this type of reality at only 8 years old….and although I know that there is nothing I can do to change it, I will pray that somehow God will find a way to make things just a little easier for her. So please continue praying for her complete healing so that she never ever has to go through any of this ever again…pray that she can go back to being my healthy little girl!
***P.s the walking is coming great thanks to the Water Therapy…she absolutely loves it. When she is in the water she is like a fish…she can do all the things she used to be able to do before her illness…it makes my heart happy that she enjoys it so much…and she looks forward to it every week!!!