Count Down to Boston...

Here it is the end of another week. I find that Sunday nights seem to be the time I collect my thoughts and feelings and recall the experiences that occurred during a particular week in Bella's journey. It is my quiet time to reflect and sometimes purge and it gives me a "re-start" for what's next.

We started the week anxious and nervous over Bella's MRI on Monday and ended the week with an appointment with Bella's neurologist. I am HAPPY to report that Bella's MRI was ruled ALL CLEAR! Yes, a collective SIGH rang through the Rutko family! Bella's doctor opened the door and the first words he said when he looked at Bella were "She looks like a different kid to me". Now he has not seen her since he prescribed her anti-seizure medicine a month and a half ago. He was visibly impressed with her progress so much so that he is staying the course with her current medication and we will re-evaluate it again in November. He seemed very hopeful that her progress could continue since seeing how far she had come in only a month and a half. We walked out of there with smiles on our faces and hope in our hearts.

This week will bring our trip to Children's Hospital in Boston for Bella to be seen by their Retts Center. I have probably mentioned before how anxious I am to go. I have so many questions and am so desperate for guidance and some kind of answers. I am trying to prepare myself however as I often think my expectations are unrealistic as to what they can tell me. But as Jeff and I were talking, it can't be any worse than where we are now, we have no answers now so worse case, if they cannot tell us anything new, its status quo.

Overall, it was a mixed week of highs and lows, which seems to be the course in this journey of ours. The MRI took its toll, not on sweet Bella, who was back to herself that afternoon, but on Mommy. Although I had no negative "gut" feelings, I believe that the worry had lodged itself in the back of my mind. As the week went on and we got closer to Bella's appointment on Friday where we would find out the results, I found myself beginning to fall apart. Probably didn't help that we have some new concerns over some of Bella's recent behaviors..which I will get to. By Wednesday and Thursday I was down right ANGRY... haven't been angry since the first days, but for some reason I was just plain mad. I could not seem to find my way to "positive thinking" for the life of me. I am often tired of being positive.. which is no easy task when your heart is constantly aching.

Bella also had a few rough days which brought up some new cause for concern. She is constantly grinding her teeth and nothing we do seems to stop it. She grinds for most of the day and has episodes of screaming and hitting herself in the head combined with holding her head in her hands. It is very upsetting to watch and most often sends me into a tailspin. I have no idea if something new is hurting her or if perhaps her jaw or head simply hurts from grinding. She is also inconsolable during these periods which is never easy. In addition, she seems to be coughing/gagging a lot more after she eats and when she lays down for bed. I am concerned that she is having acid reflux (which is yet another unfortunate symptom). One night this week she was gagging and coughing so much that she ended up getting sick. I truly believe it was not from anything she ate, but from her trying to get the reflux feeling out.

So you see, this week these things just made me MAD. I fight so hard not to wallow in self pity and I know all the logical reasons for staying positive, but this past week I just didn't have it in me. So I ended up spending two days being angry and wanting to break and throw things. I stopped short of the breaking things but it felt good to say it. In sharing my feelings with my incredible support team, I was able to keep it at two days, that was all I allowed myself and decided it was time to pull myself up and get back to the business of fighting the good fight with my daughter. So I add these concerns to the list for Boston and hope for answers.

Then Friday came and we got such great news at her appointment and such positive feedback from her doctor, it was the momentum we needed. Sometimes being on this crazy roller coaster skews our perspective..it was her doctor saying "look at how much has happened with her progress and its only been a month and a half". It is like the passing of time, since this whole thing started, seems to me to exist in some alternative universe where a day equals a year. So sometimes I forget how much Bella has improved in a short period of time. So it was a good reminder. It is so strange how sometimes it is something so obvious that someone says or points out that has a profound effect on me and provides clarity. Even for a moment.

Clarity and understanding..two of the many things I am hoping this week's appointment in Boston will bring. So we wait..and of course I will write and share all we learn. Please if I may be so bold to ask again, keep Bella in your prayers...I know the medicine is working, but I think it goes a lot further than that.. and I thank all of you.