Sunday, September 30, 2012

Can't Wait...

Till it's over!  Jerry has MRI procedures on Tuesday.  We need to be downtown by 7am (at least it's Cleveland downtown and not Chicago!).  He will have an MRI of his brain to look at his pituitary gland for any abnormalities and will have an MRI of his heart.  If the pictures are not clear because he is too small for a heart MRI then they will discontinue it.  Hopefully they will get good pictures and, even more importantly, we hope they show that the artery and the aorta are fine.  If this is true, he will not have to have the heart cath that would be scheduled next year.  He will be fully under anesthesia and intubated.  I am sure he will be fine but it is still very scary for us.  We just cannot wait until this is over.

I have talked with Jerry a little bit about how it will go and think he will do okay.  He will drink a little medicine to make him sleepy and then breath in the gas to go completely to sleep.  Then he should not feel them put in the IV.

Isaac is going through the testing for his lack of linear growth and sudden increase in weight gain.  He is TERRIFIED of his blood test.  We are going to go after school tomorrow.  I told him about it tonight and tried to focus on the "fun thing" after it is over.  He cried really for over an hour almost until it was time for bed.  Hopefully he will not totally fight the whole thing and will realize actually that it is not that bad.  Then, at some point, Isaac has this really strange test to do for cortisol levels.  I have to wake him at 11:30 at night and have him spit all of his saliva in a cup until midnight.  STRANGE, I know.  He is not nice in the middle of the night and this will for sure be a huge battle and I can hardly blame him!!  He is doing a lot of sleep walking these days and when we gently guide him back to bed he starts to wake up and is very angry.  One sleep walking episode we found him by the door to go outside putting on his shoes!

John got a new job!!  I can't remember if he had it already at the last post...  So we are bidding on houses.  Yes, houses.  We tried one and they didn't go down as low as we wanted so we found another.  It is so tough because we have been in limbo so much longer than we had planned and now I feel like we are kind of rushing to get a house...a house that is supposed to be our forever house!  

Between all of these things and being pretty sick with a bronchitis, I have not gotten hardly any sleep.  To get settled in our own house and be done with all of this testing will be so nice.  I hope they really figure out something that will help Jerry's appetite.  He is not eating real well and I don't think he has gained an ounce in a year.  He did just gain an inch or so recently and looks so lean.  Oh, I almost forgot something so important!  Jerry is going to PRESCHOOL!  I never thought he would be healthy enough and just wasn't sure it would happen.  He is loving every second of it and sings all the songs from school.  He just beams getting out of the car and running in.  It is so amazing to see him like this and I am just so happy for him.  I stayed at school with him for the first few days and it was so cool to see him do all the school things for the first time.  Also amazing is that he has gotten over a cold and then a cough without an ear infection and never got my high fever and cough that my mom also had!  Feeling very Blessed...

Off to bed now.  pictures tomorrow...maybe...always run out of time.  Updates for sure after Tuesday.