Results are Back!

    Today was the day we received the first set of results from Madilyn's Genetic/Metabolic doctor.  They are all normal, except for her Lactic Acid levels which he will retest . Though this is suppose to be good news, it isn't really cuz all it means is more testing.  These first test he ran are more common type things, and now as we get more and more into testing, it gets more expensive and more difficult.  Difficult because now he starts testing for more rare, and disease type disorders. 
    He looked over Madilyn again, and examined her to see if she had any abnormalities which she does not.  He also discussed having another MRI done when she is around 2 1/2 to look more detail at her brain matter to see if there have been any changes.   That being said, mixed emotions are running through my head, and I'm getting more doubtful we will ever find out what is wrong with Madilyn. 
     The doctor then discussed the next battery of test he wanted to run,  which meant more blood work, which equals IV team.   Last time they couldn't get her blood to flow with just a regular poke so they had to call down the IV team.  Of coarse that is what they had to do again today.  This time they had to get 6 viles of blood, 14 ml's and for her weight she can only have 16 ml's taken. She was almost at her max of how much blood they can take from her small body.
       It was horrible, the IV team had to poke her twice cuz the first vein on her left hand collapsed.  She was shaking, screaming, and arching her back.  It was not a pretty sight for any mother to have to see, but I stayed strong and stood by her side.  Daddy and her Aunt L were waiting outside of the room, but kept checking to see if I was ok.  There was a moment I about lost it, when they had to pull out of the vein and start again. 
     Another waiting game which never gets any easier.  Last time I kept calling and calling wondering when the results were going to be back.  I just need to stay patient and calm.  Some of you might wonder when is this all going to end.  My husband did ask the Doctor today when we should call it quits, and he replied, "you want to know, and you should know, and really it is just a waiting game."  So basically not until we know.  My husband and I's answer to that is,  we want to know if there is something we can do to help her, but don't need to know if it is just going to put a name to it. 
    I just want to thank all of you who have left comments, and who have prayed for us and Madilyn.  You are all so very sweet and we appreciate your thoughtfulness.  This isn't an easy road, but feel blessed to have family and friends who are there for us.  Like always we will keep posting and keep updates on Madilyn's progress! 

This was after blood draw, she was so pooped!