Friday, October 8, 2010


We got word this week from our Cardiologist this week that Samuel needs a pacemaker regardless of the medicine's impact on the Bradycardia since he is still having the pauses however less often. The week was a time of researching and agonizing over making a decision about the next step.. We have found a mito specialist in Atlanta that is world renowned for diagnosing mitochondrial disorders and as those are the suspected theory of the hour we started thinking it might be the way to go for the muscle biopsy even if it means we can't do the pacemaker and biopsy at the same time.. but upon looking into the atlanta area we discovered the sibley heart center at Children's Hospital of Atlanta, a well respected cardio program. Shands Jacksonville put us down for surgery this upcoming wednesday but today we decided to "jump trains" as the cardiologist put it and cancel the admission for Jaxonville and instead go to Children's Hospital of Atlanta. Standing up for our decision and being clear about our plan to go with the answers God was giving us this week took alot for me. I have a hard time not just letting someone tell me the best way to go..respecting my own gut feelings. But lately I feel gut feelings that I ignored may have helped us earlier and the times when I did follow them.. served us quite well. God talks to us in unexpected ways and for me it is no burning bush.. more like an insatiable hunger for better options.

The rest of the week was me trying to do some of the "normal day to day stuff." Sam started back into therapy Monday and was sooo excited to see his therapists again. He has 3 different "girlfriends" and he is a major flirt! Then tuesday we got to join Bella on her field trip to the local turtle creek nature walk. It was perfect because normally we can't go to much public outings for fear of Sam getting germs etc..but this was outdoors and he got to just stroll along and enjoy the sights. I had to snap a picture of him before we left for the trip because he was looking tooo cute in little man clothes. Who said boys are not fun to dress?? Wish Jason would let have more input in his attire..I think I have decent taste!

Bella loved having her mom and brother along for the day. None of it would have been possible without the help of my good friend Jen who kept Sofia and took her to gymnastics with her daughter and out grocery shopping. What a gift! I am blessed by good friends. I hope she will let me return the favor..the many favors.

I also had a chance to attend a baby shower for a friend I had not seen through her entire pregnancy. It was nice to have time away for an hour or two. She was the picture of a beautiful, expecting young mother. Seeing how excited and fresh she was made me happy. I feel like I lost alot of that in this pregnancy towards the end when things were so concerning and I could not shake my worries regardless of how many times the Dr would tell me he looked just fine. I was nothing like her at that point. The anticipation was tied more to fear than joy. I am certain now that I knew we had challenges ahead..on some kind of spiritual level. But the funny thing is I do have tons of Joy now although it may be the kind of joy that comes through teary moments and feeling like savoring every smile he gives me.. I am trying to set aside fear and embrace the joy. It is really a decision to do so. 

This morning I did not embrace inner joy though to be honest..I was rushed and stressed out about getting to pensacola for our cardio appt and dropping off the girls and getting directions and packing all sam's equipment, the meds, my pump, his milk, the diaper bag etc etc.. when I pulled into reverse and side swiped Jason's car..... ahhh.. just what we needed.. two messed up vehicles. First I cried.. then I vented to a friend and then I finally found my humor! It could be worse. It could always be worse! So now I am awaiting final word on how things will go for Sam's surgery but in the meantime I am going to keep working on staying positive and focusing on the joy.  

No comments:

Post a Comment