neuro appt

hazel had her neurologist appt today.  it was confusing.  we thought the main reason we went there was b/c of the head growth but this dr seemed confused.  she said her head was in the 53% and when we questioned her she went and asked the nurse and came back and said 87%.  still different than the 95% the dr said.  but the dr seemed mostly concerned about her 'obvious low tone' and how she is 'very behind in her milestones'.  maybe this chick doesnt know that its developmentally normal to not walk until 18 months.  i know hazel was slightly behind in other milestones but not extremely behind.  hazel had good strength to pull an object, grasp small objects, and no feeding issues, but her feet bend back to her shins and she has slip through when you pick her up.  so what.  (you can tell my tone about the situation has changed).  she said the low tone could be from a problem in the brain, muscles, or spine and she thinks hazels is a muscle problem.  so she wanted to start with 11 different lab tests-blood and urine.  she said then send us to childrens in st louis for a muscle biopsy.  and then do an mri where they need to sedate her.  i think she said a few other tests but i kinda got lost in all the info and visualizing in my head the trauma my child would be enduring through all this.  she also said she needs 'the therapies' 2x a week.  so get ei here stat!  so we sat around and waited for these 12 scripts (labs plus therapy, which she forgot to give) and tyce was not liking everything that just went down in our first appt and i thought i was going to puke.  we finally left and were supposed to drive over to the lab but just skipped town and headed home when i found out how they would have to collect her urine.  she was done for the day and so were we.

i know i thought i wanted an answer to why she has low tone, but now i think i dont.  yes probably some of the reason is b/c it involves putting hazel through pain when we dont even know if any of this stuff will give us an answer.  but mainly ive realized today-why do i need an answer?  what does it matter if they tell me hazels 19th chromosome is twisted or she has rhinoceroscephalatitis?  i have a label.  it doesnt change our plan for her (at least i dont think it does if it is a static condition).  we will still continue therapy and my daughter will someday still walk, run, and play even if she is a little clumsier than most.  we have decided that right now since the concern isnt with her head any longer, we will hold off on testing and try to increase therapy to see if her tone improves.  i truly do not believe we will get an answer from the testing just from past experiences with students i have had that have similar situations.  i dont want put hazel through all this crap (and $) to find out they dont know why she has MILD low tone.  i know i sound crazy from going from one extreme of wanting answers to now having the opportunity to get the answers and not taking it.  but we do feel its the right choice, even if hazels dr thinks we are crazy too :)