Right before the rug was pulled out from beneath us!

Monday, June 27, 2011

Going back to Boston

   The doctors have been saying Jake needs to be active because he is gaining a bit of weight.  We have tried to get him to walk the dogs... no interest. We tried swimming... not for him. So we made an appointment with a trainer at the YMCA.  The appointment was at 7.  He worked out with the trainer who showed him things he could do, even with his limitation until about 7:45. Then came home and slept until 3 o'clock in the afternoon.  And then went to bed and slept throughout the night..  We tried it again on Friday,  he worked out for a little less than a half hour.  We got home at 10, and he slept.  I woke him up at 4:30.  I called the doctor... fatigue after exertion is a sign after all.... So we went to see the cardiologist this morning...and He is concerned as well.....  He said we should pull the plug on waiting and Call Boston.  So after our second Doctor appointment today...  I called the doctor in Boston, and they said our cardiologist had already called and Dr. Maron wants to see Jake to do a stress echo, and he wants him to see another doctor while we are up there.. but I forgot to ask who the other doctor was and why we need to see him...  ( so that is on my to do list..) Our cardiologist said there is a test they can do with a catheter that will tell exactly what the gradient is. This will tell if he needs the surgery now  or if we can wait.  The office manager made our appointment for the next available slot... August 23rd.
 Ok ... I realize this sounds insane.... I have been a mess all day. I  CALLED the doctor... because I was concerned.... Why is it a shock that they want us to go to Boston?  I guess deep down I was hoping I was just being a paranoid mother. Like when he was little and I took him to the doctor for every little bump or bruise.. or tug at the ear.. fearful of an ear infection...  I thought I was just being over protective and thought they'd say....  "No , not time yet"... AND I'm shocked that I feel like that because I 've been going insane wondering why they are waiting and not just jumping in and doing they myectomy now? They know it needs to be done!  So yeah! INSANE describes my emotions right now....
    And just to be clear.. at this time we do not have the myectomy scheduled.... we are only going up to have more tests done to see if it is time to proceed with the myectomy... I do not know if they decide it is time... if they will do it while we are there.. or if they will send us home with a date..  I really just don't know.... I'm not sure what plan God has in store for us, and I am trying to have faith that although I may not be able to picture the plan... there is one.  I just don't understand how getting an appointment after school is back in session works in the plan... when I have the whole summer off? I know,  I know.. I can't see the big picture from were I sit.. and I am sure it will all work out in the end.  Just have faith...
So Now,  I have 55 days to stress, worry and research about everything. Jacob needs to continue to exercise. So I was thinking... What if he works out at night???? Will he just get a better night sleep,  and wake up at a descent time in the morning.  This might be a great idea! Ding Ding Ding.. we have a winner!  ... well I hope it is a winner...  We will try it tomorrow...

Monday, June 20, 2011

Don't Stop Believing!

Ok Sing it with me... "Some will win, some will lose ...Some were born to sing the blues ...Oh, the movie never ends .....It goes on and on and on and on...."  Because Jake came out of surgery singing Don't Stop Believing, when I heard Journey was coming to town in Septemeber.... I HAD to buy tickets.... Right? How could I not? 

My goal is to keep Jake busy this summer. Get him out of the house, up and moving. He still takes a nap every day .. sometime two.... Today he seriously slept most of the day...He is also still gaining weight... umm...yeah, NOT GOOD! Tonight we got him in the pool and tried to persuade him into doing water aerobics....but yeah .. he wasn't feeling it...  He did stay moving, so it's a start.

I love the old saying laughter is the best medicine. It got me thinking, ( yes sometimes, even , i do)  so we took Jake to his first comedy club show at Sidesplitters.  He thought it was hilarious and laughed throughout the entire show.  He has been staying busy going to his friend's houses... and he has only had one rough day dealing with the depression. I have to say I am really impressed with Jake's friends. Lee, Clayton, Ryne, Taylor and Joey are just amazing, great kids that have really been there for Jake to help him through all of this.

For Jennifer's 16th birthday we went to Disney Quest. I worried that it would be too much for Jake.  I thought for sure he would be too exhausted to enjoy the day or want to leave so he could take a nap.  However ... I am very happy to report that Jake did awesome.  He went up and down the stairs with no problem at all, no shortness of breath.... WOOHOO! We walked around Downtown Disney. The kids made light sabers at Once Upon a Toy.  (as soon as I typed that a deep voice in the back of my head was saying... may the FORCE be with you! ... you can admit it.. you thought it too! LOL ) The only time he let on that he was tired was when we stopped for lunch and he asked Jenn to fill his drink so he didn't have to get up... and he zonked out on the ride home.

Next week,  Jake will be presenting an award to the man who made it possible for us to fly to Boston. We are working on a slide show for the presentation. Lots to look forward to.  Keeping our heads held high and enjoying life, because life is short... and unpredictable.